msladyinca
04-21-2007, 07:09 PM
These are my opinions and experiences only (not medical advice) with MS & Tysabri.
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts from Tysabri MS patients that are not achieving/feeling the same results of symptom improvement(s) as others have, and are becoming disheartened. So this post is for them, and for "newbies" to both MS and Tysabri:
For the disheartened: please try to remember 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 3) If your disease has not progressed and you have no new symptoms since starting Tysabri, it's apparently working for you! Tysabri's label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Which is why I firmly believe (imho) that Tysabri intervention is needed EARLY at the first onset of MS (so that the damage does not become permanent).
Am I still w/c bound since re-starting Tysabri 7 months ago? Yes (I have been since 6/5/05. Is it permanent? I honestly don't know, but my attitude remains positive and hopeful that with the help of Tysabri and my physical therapy exercises that I still do 3 x's a day, I will walk again someday - albeit kinda funny looking - lol )...,
Are both my hands still numb? Yes (And they have been since my dx back in 1976 (so the damage is probably permanent, but I still have hope that I'll gain back some of the coordination and dexterity that I still had in them prior to 6/5/05 );
Is my balance still bad? Yes (But it's highly improved for approx. 3 weeks after my infusion, but I still have hope that I'll completely and/or significantly gain back my balance one day);
Are both my feet still numb? Yes (But I can still curl my toes on both feet and move them a bit for approx. 3 weeks after my infusion, but again, I still have hope of walking one day);
Is my optic neuritis better in my right eye? Hell yeah, for approx. 2 weeks after my infusion, I can't use my glasses to watch TV, but alas, I need them again going into the 3rd week after my infusion. I think part of this is due to 2 other factors: all the steroid damage I've had over the years, and age (I think I need bifocals now - :mad: ARG! )
Is my memory better? You betcha, and it remains so for approx. 3 weeks after my infusion. (Wait, what were we just talking about? lol)
Is my slurred speech better? Yeth, and sustained. (Was that a lisp I just heard? heehee)
Are my bladder issues better? Yes, vast improvement, and sustained.
Is my energy level better? Yes, definitely, for approx. 3 weeks after my infusion .
Is my Quality of Life better? Abso-friggin-lutely! :D
Without Tysabri, I was rapidly approaching SPMS without relapses and becoming bedridden...helpless and hopeless, and ineligible for Tysabri. :(
With Tysabri, for me, HOPE SPRINGS ETERNAL that my body still has a fighting chance to regain/heal itself temp. or even partially regain what has been lost to MS providing the damage isn't permanent, and at the very least, maintain my disability level and not get worse. When I start to feel my small improvements fading away about 3 weeks after my infusion, I can tell myself: "Lauren, hold on, only one more week, soon you will get back to where you were 3 weeks ago, and there might even be a surprise waiting for you (a new improvement!)"
Tysabri = Hope? For me, oooh yeeah!
Now, for those unfamiliar to Tysabri and/or MS, first let me say that the following is not medical advice regarding either Tysabri or MS.
Tysabri works differently than the older generation MS medications (the ABCRs), as Tysabri is specifically designed as a Selective Adhesion Molecule (S.A.M.) that attaches itself to the T-cells (inflammation cells) that attempt to cross the Blood Brain Barrier (BBB) & enter the Central Nervous System (CNS) which is comprised of our brain, optic nerves, and spine.
This is when the T-cells see our myelin (the protective coating for our nerves) as foreign, and starts to attack it, leaving scarring (sclerosis) that shows up most of the time on a MRI as white/grey spots, which eventually leads to axonal loss (damage resulting in disability).
It is also explained as a misfiring of nerve signals to the receiving nerves which can result in various symptoms/disabilities.
Generally speaking, if lesions/spots are showing on MRI and lit up like lightbulbs, that usually means the disease process/lesion/relapse is active.
Further, even if a person still feels great while not on a Disease Modifying Drug (DMD), they can still have "silent lesions" forming with no resulting disabilities at that time. Unfortunately, due to the nature of MS being a chronic and progressive disease, the resulting disabilities usually show up later, and by then, the resulting damage might be permanent. This is why most neurologists want the patient to start on one of the various DMDs, as soon as possible.
Tysabri's mechanism of action against MS: When Tysabri attaches itself to the damaging T-cells, it prevents a majority of them from crossing the BBB and entering the CNS. And even if a few do get across the BBB and enter the CNS, Tysabri is able to migrate (move) them away from our myelin.
Tysabri basically stops/slows the cascading effects of the continuous onslaught of damaging T-cells from attacking our myelin, which in turn, gives our body an opportunity to try & heal itself (providing the damage is not permanent).
Regarding various mis-information circulating all over the web about Tysabri, please note: Pursuant to the approved FDA labeling, Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a first line (like the ABCRs) AND/OR a second line defense/treatment for MS.
The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does NOT necessarily have to fail one med first in order to have Tysabri. Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March, 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican.
With regard to Tysabri and the use of steroids to treat a relapse: According to the TOUCH protocol, the patient CAN have SHORT courses of steroids (IVSM or Prednisone), to treat a relapse/flare-up while on Tysabri. (see the NMSS site).
Lastly, regarding PML: The experts and authors of the world renowned NEJM attributes PML to diminished immunosurveillance (or a very low immune system), and not to Tysabri.
There were 3 trial patients that developed PML: 2 of which were given Tysabri in combination with Avonex (which is another immunomodulator), and 1 Crohn's patient that had a previous severely compromised immune system due to being on Azathioprine for 6 years. Of these 3 patients - 2 died, and neither of them had MS.
Therefore, out of approx. 3,000 trial pts that had a confirmed dx of MS and Crohn's disease, that did not have a compromised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 gen. pop. pts that also met the above criteria (me included) from 11/04 to 2/05, that's 8,000 pts total, plus the additional approx. 8,000 pts that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - for a grand total of 16,000 pts - get this: not one of us developed PML and died-which is a risk factor of ZERO in 16,000 or 0:16,000.
Each patient should discuss Tysabri with their treating physican, and weigh the 0.1% risk of PML vs. it's enormous benefits.
The above is not meant to scare anyone (we are all different-there's no "one size fits all" explanation for a complicated disease like MS, nor a complex medication like Tysabri)-it's only meant to share my experiences with Tysabri & MS, and to try and help support & educate others in their disease & briefly/very simply explain Tysabri's mechanism of action against MS.
Imho, Knowledge Is Power. MS symptoms are like snowflakes-all uniquely different for each of us-yet all similarly the same.
What we choose to do with the information we learn about our disease and its available therapies can make the difference between a lifetime of pain, suffering, disabilities, fear and confusion - or a lifetime filled with hope, possibilities, and a better Quality of Life.
It's our choice.
((((((((hugs to all))))))))
Lauren :)
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts from Tysabri MS patients that are not achieving/feeling the same results of symptom improvement(s) as others have, and are becoming disheartened. So this post is for them, and for "newbies" to both MS and Tysabri:
For the disheartened: please try to remember 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 3) If your disease has not progressed and you have no new symptoms since starting Tysabri, it's apparently working for you! Tysabri's label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Which is why I firmly believe (imho) that Tysabri intervention is needed EARLY at the first onset of MS (so that the damage does not become permanent).
Am I still w/c bound since re-starting Tysabri 7 months ago? Yes (I have been since 6/5/05. Is it permanent? I honestly don't know, but my attitude remains positive and hopeful that with the help of Tysabri and my physical therapy exercises that I still do 3 x's a day, I will walk again someday - albeit kinda funny looking - lol )...,
Are both my hands still numb? Yes (And they have been since my dx back in 1976 (so the damage is probably permanent, but I still have hope that I'll gain back some of the coordination and dexterity that I still had in them prior to 6/5/05 );
Is my balance still bad? Yes (But it's highly improved for approx. 3 weeks after my infusion, but I still have hope that I'll completely and/or significantly gain back my balance one day);
Are both my feet still numb? Yes (But I can still curl my toes on both feet and move them a bit for approx. 3 weeks after my infusion, but again, I still have hope of walking one day);
Is my optic neuritis better in my right eye? Hell yeah, for approx. 2 weeks after my infusion, I can't use my glasses to watch TV, but alas, I need them again going into the 3rd week after my infusion. I think part of this is due to 2 other factors: all the steroid damage I've had over the years, and age (I think I need bifocals now - :mad: ARG! )
Is my memory better? You betcha, and it remains so for approx. 3 weeks after my infusion. (Wait, what were we just talking about? lol)
Is my slurred speech better? Yeth, and sustained. (Was that a lisp I just heard? heehee)
Are my bladder issues better? Yes, vast improvement, and sustained.
Is my energy level better? Yes, definitely, for approx. 3 weeks after my infusion .
Is my Quality of Life better? Abso-friggin-lutely! :D
Without Tysabri, I was rapidly approaching SPMS without relapses and becoming bedridden...helpless and hopeless, and ineligible for Tysabri. :(
With Tysabri, for me, HOPE SPRINGS ETERNAL that my body still has a fighting chance to regain/heal itself temp. or even partially regain what has been lost to MS providing the damage isn't permanent, and at the very least, maintain my disability level and not get worse. When I start to feel my small improvements fading away about 3 weeks after my infusion, I can tell myself: "Lauren, hold on, only one more week, soon you will get back to where you were 3 weeks ago, and there might even be a surprise waiting for you (a new improvement!)"
Tysabri = Hope? For me, oooh yeeah!
Now, for those unfamiliar to Tysabri and/or MS, first let me say that the following is not medical advice regarding either Tysabri or MS.
Tysabri works differently than the older generation MS medications (the ABCRs), as Tysabri is specifically designed as a Selective Adhesion Molecule (S.A.M.) that attaches itself to the T-cells (inflammation cells) that attempt to cross the Blood Brain Barrier (BBB) & enter the Central Nervous System (CNS) which is comprised of our brain, optic nerves, and spine.
This is when the T-cells see our myelin (the protective coating for our nerves) as foreign, and starts to attack it, leaving scarring (sclerosis) that shows up most of the time on a MRI as white/grey spots, which eventually leads to axonal loss (damage resulting in disability).
It is also explained as a misfiring of nerve signals to the receiving nerves which can result in various symptoms/disabilities.
Generally speaking, if lesions/spots are showing on MRI and lit up like lightbulbs, that usually means the disease process/lesion/relapse is active.
Further, even if a person still feels great while not on a Disease Modifying Drug (DMD), they can still have "silent lesions" forming with no resulting disabilities at that time. Unfortunately, due to the nature of MS being a chronic and progressive disease, the resulting disabilities usually show up later, and by then, the resulting damage might be permanent. This is why most neurologists want the patient to start on one of the various DMDs, as soon as possible.
Tysabri's mechanism of action against MS: When Tysabri attaches itself to the damaging T-cells, it prevents a majority of them from crossing the BBB and entering the CNS. And even if a few do get across the BBB and enter the CNS, Tysabri is able to migrate (move) them away from our myelin.
Tysabri basically stops/slows the cascading effects of the continuous onslaught of damaging T-cells from attacking our myelin, which in turn, gives our body an opportunity to try & heal itself (providing the damage is not permanent).
Regarding various mis-information circulating all over the web about Tysabri, please note: Pursuant to the approved FDA labeling, Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments. What this means is that Tysabri is a first line (like the ABCRs) AND/OR a second line defense/treatment for MS.
The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does NOT necessarily have to fail one med first in order to have Tysabri. Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March, 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican.
With regard to Tysabri and the use of steroids to treat a relapse: According to the TOUCH protocol, the patient CAN have SHORT courses of steroids (IVSM or Prednisone), to treat a relapse/flare-up while on Tysabri. (see the NMSS site).
Lastly, regarding PML: The experts and authors of the world renowned NEJM attributes PML to diminished immunosurveillance (or a very low immune system), and not to Tysabri.
There were 3 trial patients that developed PML: 2 of which were given Tysabri in combination with Avonex (which is another immunomodulator), and 1 Crohn's patient that had a previous severely compromised immune system due to being on Azathioprine for 6 years. Of these 3 patients - 2 died, and neither of them had MS.
Therefore, out of approx. 3,000 trial pts that had a confirmed dx of MS and Crohn's disease, that did not have a compromised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 gen. pop. pts that also met the above criteria (me included) from 11/04 to 2/05, that's 8,000 pts total, plus the additional approx. 8,000 pts that have received Tysabri since it's relaunch in 2006 (with the same above criteria) - for a grand total of 16,000 pts - get this: not one of us developed PML and died-which is a risk factor of ZERO in 16,000 or 0:16,000.
Each patient should discuss Tysabri with their treating physican, and weigh the 0.1% risk of PML vs. it's enormous benefits.
The above is not meant to scare anyone (we are all different-there's no "one size fits all" explanation for a complicated disease like MS, nor a complex medication like Tysabri)-it's only meant to share my experiences with Tysabri & MS, and to try and help support & educate others in their disease & briefly/very simply explain Tysabri's mechanism of action against MS.
Imho, Knowledge Is Power. MS symptoms are like snowflakes-all uniquely different for each of us-yet all similarly the same.
What we choose to do with the information we learn about our disease and its available therapies can make the difference between a lifetime of pain, suffering, disabilities, fear and confusion - or a lifetime filled with hope, possibilities, and a better Quality of Life.
It's our choice.
((((((((hugs to all))))))))
Lauren :)
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MSNik
04-22-2007, 11:37 AM
Luaren,
THANK YOU !!! This was an incredible post! First becasue you gave us so much information, which was clearly laid out and easy to follow but even more so because the excitement you feel and the hope that you have is very contagious through your writing!
I am on Rebif, and so far, it is doing what it is supposed to do. After only 6 months, no active legions on my MRI, no additional legions, and I started Rebif with about 50 legions (my first MRi showed that many) and no recent relapes- so I think its doing what its supposed to do; however, I have always wondered about Tysabri and exactly how it worked with the T-cells. Now I know.
Lauren, you are a very brave woman, and Im very proud of you. Keep doing what you are doing. PLease keep us posted and let us know how this continues to affect your quality of life and what progress you make.
Big hugs,
Nikki
THANK YOU !!! This was an incredible post! First becasue you gave us so much information, which was clearly laid out and easy to follow but even more so because the excitement you feel and the hope that you have is very contagious through your writing!
I am on Rebif, and so far, it is doing what it is supposed to do. After only 6 months, no active legions on my MRI, no additional legions, and I started Rebif with about 50 legions (my first MRi showed that many) and no recent relapes- so I think its doing what its supposed to do; however, I have always wondered about Tysabri and exactly how it worked with the T-cells. Now I know.
Lauren, you are a very brave woman, and Im very proud of you. Keep doing what you are doing. PLease keep us posted and let us know how this continues to affect your quality of life and what progress you make.
Big hugs,
Nikki
Natatude
04-22-2007, 11:44 AM
Thank You so much Lauren for all of ur info u have posted the past few weeks! You are the one who really set my mind at ease to call the neuro and tell him ok Lets go! I start mine for the first time on June 13th at 3pm I will Let u know how it goes and keep posting here about it! :)
msladyinca
04-22-2007, 04:36 PM
Hi there Nikki!
I am glad the experiencs and MS info I have shared helps us all...I think ALL of us surviving with MS are brave :)
I am happy Rebif is working for you (yay!) If it ever stops in the future (which I pray it doesn't and none of your lesions leave permanent damage), at least you can now make fully informed choices, after discussing same with your dr, as to your options (and look brilliant at the same time! - heehee ;))
All my best Nikki,
((((hugs)))))
Lauren
I am glad the experiencs and MS info I have shared helps us all...I think ALL of us surviving with MS are brave :)
I am happy Rebif is working for you (yay!) If it ever stops in the future (which I pray it doesn't and none of your lesions leave permanent damage), at least you can now make fully informed choices, after discussing same with your dr, as to your options (and look brilliant at the same time! - heehee ;))
All my best Nikki,
((((hugs)))))
Lauren
msladyinca
04-22-2007, 04:49 PM
Hi there again Natatude!
Awww, you're so sweet, and thanks so much for your very kind words...,
June 13th, eh? (whips out calender and marks that date with a BIG "*" for Natatude) ;)
Woooohoooooo, good luck dearheart, and you better keep us posted :jester:
All my best,
((((((hugs))))))
Lauren
Awww, you're so sweet, and thanks so much for your very kind words...,
June 13th, eh? (whips out calender and marks that date with a BIG "*" for Natatude) ;)
Woooohoooooo, good luck dearheart, and you better keep us posted :jester:
All my best,
((((((hugs))))))
Lauren
purplegolfer
04-23-2007, 11:04 AM
Lauren,
Thank you so much for your wonderful post. The information is out there in medical speak but it is great to have it broken down so us normal people can understand it. You greatly eased my mind before my first infusion and I am looking forward to my second this Friday. My symptoms are minor comparatively: one leg that is altered in sensation and has been for over a year, minor memory, speach issues, and energy problems so it is hard to say if Tysabri is working but I will say my energy level has been up, I'm not tripping over words like I had been and time will tell on the memory! (LOL) I think I am stuck with the leg but it does not affect my daily life so I'll take it! I am using Tysabri as a first defense medication and am hoping that it lives up to it's potential. I'm an active 37 so my DX definitely put a cloud on my future but I have so much more hope and confidence that my health will remain with this medication. Your breakdown of your symptoms and response to Tysabri is a great testimonial with so much more positive than negative that I hope more people will try this medicine without going through the PML scare. Thank you for your voice of reason- I think we all need a calming factor sometimes and I think you have definetly provided it to so many on this site. Good luck to you and please know you have my thanks!!
Jen (purplegolfer)
Thank you so much for your wonderful post. The information is out there in medical speak but it is great to have it broken down so us normal people can understand it. You greatly eased my mind before my first infusion and I am looking forward to my second this Friday. My symptoms are minor comparatively: one leg that is altered in sensation and has been for over a year, minor memory, speach issues, and energy problems so it is hard to say if Tysabri is working but I will say my energy level has been up, I'm not tripping over words like I had been and time will tell on the memory! (LOL) I think I am stuck with the leg but it does not affect my daily life so I'll take it! I am using Tysabri as a first defense medication and am hoping that it lives up to it's potential. I'm an active 37 so my DX definitely put a cloud on my future but I have so much more hope and confidence that my health will remain with this medication. Your breakdown of your symptoms and response to Tysabri is a great testimonial with so much more positive than negative that I hope more people will try this medicine without going through the PML scare. Thank you for your voice of reason- I think we all need a calming factor sometimes and I think you have definetly provided it to so many on this site. Good luck to you and please know you have my thanks!!
Jen (purplegolfer)
msladyinca
04-23-2007, 02:10 PM
Awwwww Jen,
Thanks so much for your very kind words...if I can help and support just one fellow MSer, it's my profound honor, privilege and pleasure to share my knowledge and experiences with both Tysabri and MS.
I am so happy to hear you are doing well with your Tysabri treatments..and I suspect - imho - that you will achieve even more improvements with more infusions for this reason: your Neuro is knowledgeable enough to be using Tysabri as a first line defense against your MS, and you were brave to trust in him and the truth about Tysabri, therefore both of you are treating your MS EARLY with Tysabri, which can help prevent any permanent damage from occurring - plus giving you the greatest opportunity to stop/slow your disease process down while taking advantage of it's superior efficacy of 67% leading to Tysabri's greatest benefits! Knowledge really IS Power :) :) :)
Kudos to both of you dearheart, and good luck with infusion #2...your positive attitude combined with hope are a force to be reckoned with!
Please keep us all posted on your progress and take care now,
(((((((hugs))))))))
Lauren :)
Thanks so much for your very kind words...if I can help and support just one fellow MSer, it's my profound honor, privilege and pleasure to share my knowledge and experiences with both Tysabri and MS.
I am so happy to hear you are doing well with your Tysabri treatments..and I suspect - imho - that you will achieve even more improvements with more infusions for this reason: your Neuro is knowledgeable enough to be using Tysabri as a first line defense against your MS, and you were brave to trust in him and the truth about Tysabri, therefore both of you are treating your MS EARLY with Tysabri, which can help prevent any permanent damage from occurring - plus giving you the greatest opportunity to stop/slow your disease process down while taking advantage of it's superior efficacy of 67% leading to Tysabri's greatest benefits! Knowledge really IS Power :) :) :)
Kudos to both of you dearheart, and good luck with infusion #2...your positive attitude combined with hope are a force to be reckoned with!
Please keep us all posted on your progress and take care now,
(((((((hugs))))))))
Lauren :)
Karen8550
04-24-2007, 03:35 PM
Hi My name is Karen and I'm so happy to say that I am starting my first infusion on May 11th and am so excited with a little nervousness mixed in. Your notes really help me though. I live in the northwest suburbs of Chicago and would love a support group I could go to if anyone out there has one or an idea please let me know. Thanks for helping me!
Karen
Karen
candle66
04-24-2007, 03:47 PM
I have to contact my neuro because for some reason after 7 years I seem to start having some kind of allerigic reaction to my copaxone. I tried Avonex in the past.. NO GOOD! I was shaking and it took 3-4 week after I stopped to get that heavy chest feel to go away.
Tysabi is my last choice. I just had a baby 9 months ago. I know I have read the odds of dying from this are slim, but are they?
I also dont want to get worse. I was doing great on copaxone and I am afraid going on tysabi of either havign a reaction to it or MS getting worse
Tysabi is my last choice. I just had a baby 9 months ago. I know I have read the odds of dying from this are slim, but are they?
I also dont want to get worse. I was doing great on copaxone and I am afraid going on tysabi of either havign a reaction to it or MS getting worse
msladyinca
04-24-2007, 06:44 PM
Hi there Karen!
Congrats on starting Tysabri soon...woooohooooo!:)
As for a local support group - I'd suggest you contact your local MS chapter of the NMSS...they have a Nationwide toll free # listed on their website...if you find the first support group is not to your liking (some can be kinda depressing), go to another one in your area because some are actually terrific :angel:
All the best dearheart, please keep us posted...,
((((((((hugs)))))))))
Lauren
Congrats on starting Tysabri soon...woooohooooo!:)
As for a local support group - I'd suggest you contact your local MS chapter of the NMSS...they have a Nationwide toll free # listed on their website...if you find the first support group is not to your liking (some can be kinda depressing), go to another one in your area because some are actually terrific :angel:
All the best dearheart, please keep us posted...,
((((((((hugs)))))))))
Lauren
msladyinca
04-24-2007, 07:02 PM
Hi candle66,
I replied to your other post under "Tysabri Reaction?".
I know I have read the odds of dying from this are slim, but are they?
Your fear is understandable, especially with a new baby to take care of...I would suggest you research all you can about Tysabri, and have an indepth discussion regarding Tysabri with your neuro...Fyi, there have been ZERO cases of PML reported in over 8,000 MS patients with non-compromised immune systems receiving Tysabri as a monotherapy since it's relaunch in 2006.
No drug is without risk, not even aspirin. Only you know your own comfort level of risk.
Good luck and best wishes candle66,
Lauren
I replied to your other post under "Tysabri Reaction?".
I know I have read the odds of dying from this are slim, but are they?
Your fear is understandable, especially with a new baby to take care of...I would suggest you research all you can about Tysabri, and have an indepth discussion regarding Tysabri with your neuro...Fyi, there have been ZERO cases of PML reported in over 8,000 MS patients with non-compromised immune systems receiving Tysabri as a monotherapy since it's relaunch in 2006.
No drug is without risk, not even aspirin. Only you know your own comfort level of risk.
Good luck and best wishes candle66,
Lauren
evolution88
04-25-2007, 01:36 PM
Lauren,
Thanks for posting your Tysabri experience.
I was dx on 1/2005 and received T for two months. Felt like I was healing well, then the recall happened. Avonex since which is OK, but not the same level as T.
I'm looking forward to getting back on Tysabri in August of this year. I am forced to wait for insurance/job reasons. Your post gives me great hope since up to this point, I feel most of my damage is not permanent.
Thanks again
Thanks for posting your Tysabri experience.
I was dx on 1/2005 and received T for two months. Felt like I was healing well, then the recall happened. Avonex since which is OK, but not the same level as T.
I'm looking forward to getting back on Tysabri in August of this year. I am forced to wait for insurance/job reasons. Your post gives me great hope since up to this point, I feel most of my damage is not permanent.
Thanks again
msladyinca
04-25-2007, 02:25 PM
Hi evolution88,
I am so glad you found my post helpful, and am happy to hear you will be going back on Tysabri later this year, and also happy to hear you feel your damage is not permanent - yay :) :) :)
I agree with your statement re: Avonex...although it did not work for me at all, nor did Copaxone.
Here's to August for you, and good luck in your new job!
All the best ...,
Lauren :wave:
I am so glad you found my post helpful, and am happy to hear you will be going back on Tysabri later this year, and also happy to hear you feel your damage is not permanent - yay :) :) :)
I agree with your statement re: Avonex...although it did not work for me at all, nor did Copaxone.
Here's to August for you, and good luck in your new job!
All the best ...,
Lauren :wave:
evolution88
04-25-2007, 04:48 PM
Well I'm pleased to say I still have days where I feel 99% well. Although, they do seem to be coming less often lately. That could be spring, more stress, the position of the moon, who the heck knows.
msladyinca
04-25-2007, 05:28 PM
LOL, yep - I hear ya ;)
Hey evolution88, I think I know you...if your first name begins with a "T", well that means my cognitive issues are improving even more on Tysabri!...am I correct?
Don't worry though, if I am correct - I'm cool with anonymous posts also :cool: ;)
Have a great week!
Lauren
Hey evolution88, I think I know you...if your first name begins with a "T", well that means my cognitive issues are improving even more on Tysabri!...am I correct?
Don't worry though, if I am correct - I'm cool with anonymous posts also :cool: ;)
Have a great week!
Lauren
evolution88
04-25-2007, 07:14 PM
Ummm, sorry to say, it doesn't. Begins with an R. I'm also on the MSWorld site as evolution. There is an MSlady there, I was kinda wondering if that was you.
msladyinca
04-25-2007, 08:04 PM
Ooohh, yep that's where I recognized your handle, and yep, that be me <---MSlady :wave: ...so Tysabri is improving my memory!
Unfortunately, it's not putting a dent in my being a Bonehead as I thought your name was "Todd" - heehee ;)
Catch you later.
Lauren
Unfortunately, it's not putting a dent in my being a Bonehead as I thought your name was "Todd" - heehee ;)
Catch you later.
Lauren
evolution88
04-25-2007, 08:15 PM
Ah yes, you were thinking I was "ToddwithMS" weren't you.
Thank you so much for your original post. I'm so excited to get back on Tysabri before bad things happen.
When I read all the people who are out of the WC walking I think how much good it could do for someone like me who is just annoyed at this point.
They finally got MSWorld back up.
Thank you so much for your original post. I'm so excited to get back on Tysabri before bad things happen.
When I read all the people who are out of the WC walking I think how much good it could do for someone like me who is just annoyed at this point.
They finally got MSWorld back up.
PghGuy00
04-26-2007, 05:55 AM
It is good to read all the positive about Tysabri. I have my neuro checkup next week and definitely want to go this route. I was fully dx'd last year and have been doing Avonex. Im fed up with unpredicably being sick from it, so stopped taking it a few weeks ago. So glad Ive been reading this as, like most, have been scared about the PML issue, but I now feel comfortable about making my decision to go on it. Thanks
msladyinca
04-26-2007, 02:34 PM
Pgh,
Your post makes me happy to read it...imho, once MS patients learn the truth about Tysabri (which is supported by proven data as to it's safety profile, and as to it's superior efficacy of 67% with minimal side effects), their fears of PML greatly diminish and their comfort level is expotentially increased to take that minimal 0.1% risk.
It's always best to discuss Tysabri with your dr and also imho, take an active role in being your own patient advocate, thus empowering yourself to treat your disease :)
I would feel the same way no matter what DMD a patient was on, as any tool in our available arsenal of weapons to fight this dreadful, chronic, and debilitating disease that we have, is a good thing ... it's just an added bonus if it's the best one out there in over a decade, and the patient looks forward to their treatment each month, with an attitude of hope!
Please keep us all posted Pgh...
All the best to you, :)
Lauren
Your post makes me happy to read it...imho, once MS patients learn the truth about Tysabri (which is supported by proven data as to it's safety profile, and as to it's superior efficacy of 67% with minimal side effects), their fears of PML greatly diminish and their comfort level is expotentially increased to take that minimal 0.1% risk.
It's always best to discuss Tysabri with your dr and also imho, take an active role in being your own patient advocate, thus empowering yourself to treat your disease :)
I would feel the same way no matter what DMD a patient was on, as any tool in our available arsenal of weapons to fight this dreadful, chronic, and debilitating disease that we have, is a good thing ... it's just an added bonus if it's the best one out there in over a decade, and the patient looks forward to their treatment each month, with an attitude of hope!
Please keep us all posted Pgh...
All the best to you, :)
Lauren
evolution88
04-26-2007, 02:44 PM
Lauren and I sound like Biogen employees the way we trumpet Tysabri, but the fact remains, the story's of RECOVERY are so helpful.
I recently discovered MSpatients for choice, they have Tysabri testimonials. It pretty much cemented my decision to get back on T as soon as I can.
(Again, I had to go off after they withdrew the drug)
I recently discovered MSpatients for choice, they have Tysabri testimonials. It pretty much cemented my decision to get back on T as soon as I can.
(Again, I had to go off after they withdrew the drug)
purplegolfer
05-02-2007, 02:31 PM
Per Lauren's request: :-)
Had my second infusion last Friday and everything went great. I go to a Blood and Cancer Clinic for the infusion. The ladies were happy to stick me with the needle last time since I am not on chemo and my veins are large and healthy!! And they still went right thru the first one in my inner elbow!! Had to get my IV on my hand which was a little more painful but worth it since I had more mobility instead of keeping my arm straight when it is on the inner elbow. Had a nice relaxing 2 1/2 hours sitting in a chair on a Friday afternoon..caught up on GH without feeling guilty that I am watching soaps in the middle of the day! Got to see the Friday cliffhanger, got the 5* Suduko done in the paper and moved onto a book. Almost fell asleep and then it was time to go. My husband goes with me currently but I think I will soon be going by myself. The nurse who administered the infusion had checked my blood pressure every 15 minutes the first time but left me alone and only checked every 30 minutes. She even admitted to being scared to administer my first Tysabri infusion with all the PML stuff since I am the first in our area. We are not alone in our concerns!! I don't feel any different walking out than walking in! I am definitely on the PRO side of Tysabri especially since I am using it as a first line defense drug. I am hoping the observations of symptoms decreasing/going away continue and we have finally found a drug that helps (and I am not saying cure) with this disease!!
On another note and if anyone can answer for me: talked to my Nerologist's PA this morning and there is an agency in town that is ok'd with the Touch Program to administer the infusion at your home. Anyone have any experience with this? Would love the convenience but kinda have the worry about not being near a doctor although I'm assuming the medical personnel they send would be fully qualified. I haven't called yet to get the info but wanted to see if there was any real life expereince out there with this kind of situation...
Great thoughts to all- keep your head's up!!
Had my second infusion last Friday and everything went great. I go to a Blood and Cancer Clinic for the infusion. The ladies were happy to stick me with the needle last time since I am not on chemo and my veins are large and healthy!! And they still went right thru the first one in my inner elbow!! Had to get my IV on my hand which was a little more painful but worth it since I had more mobility instead of keeping my arm straight when it is on the inner elbow. Had a nice relaxing 2 1/2 hours sitting in a chair on a Friday afternoon..caught up on GH without feeling guilty that I am watching soaps in the middle of the day! Got to see the Friday cliffhanger, got the 5* Suduko done in the paper and moved onto a book. Almost fell asleep and then it was time to go. My husband goes with me currently but I think I will soon be going by myself. The nurse who administered the infusion had checked my blood pressure every 15 minutes the first time but left me alone and only checked every 30 minutes. She even admitted to being scared to administer my first Tysabri infusion with all the PML stuff since I am the first in our area. We are not alone in our concerns!! I don't feel any different walking out than walking in! I am definitely on the PRO side of Tysabri especially since I am using it as a first line defense drug. I am hoping the observations of symptoms decreasing/going away continue and we have finally found a drug that helps (and I am not saying cure) with this disease!!
On another note and if anyone can answer for me: talked to my Nerologist's PA this morning and there is an agency in town that is ok'd with the Touch Program to administer the infusion at your home. Anyone have any experience with this? Would love the convenience but kinda have the worry about not being near a doctor although I'm assuming the medical personnel they send would be fully qualified. I haven't called yet to get the info but wanted to see if there was any real life expereince out there with this kind of situation...
Great thoughts to all- keep your head's up!!
msladyinca
05-02-2007, 03:29 PM
Hi Jen!
I'm happy to hear that all went well with your infusion :) ... give your body a couple of weeks to get use to Tysabri again, and it's ability to stop/slow the cascading effects of the damaging T-cells entering the CNS...hopefully by that time - you might start seeing small, slow, steady improvements in your existing symptoms :) Isn't it amazing that we actually look forward to our therapy each month??? (at least I do - heehee)...and kudos to you and your neuro for using Tysabri as a first line defense against your MS...wooohooo!
Re: your question:talked to my Nerologist's PA this morning and there is an agency in town that is ok'd with the Touch Program to administer the infusion at your home.
Your neuro's PA must be mistaken, as I just got off the phone with a MSActiveSource Supervisor (team leader) and asked her 'anonymously' if this were true as I didn't believe it. She advised me that Tysabri can only be administered at a Certified Infusion Center, pursuant to the TOUCH protocol, and they have certified no one to administer Tysabri at home.
Jen, you might let your neuro and/or his PA knows this as what the PA is mistakenly stating will more than likely confuse other MS and Tysabri patients.
But again dearheart, congrats and please keep us posted :)
((((((hugs))))))))
Lauren
I'm happy to hear that all went well with your infusion :) ... give your body a couple of weeks to get use to Tysabri again, and it's ability to stop/slow the cascading effects of the damaging T-cells entering the CNS...hopefully by that time - you might start seeing small, slow, steady improvements in your existing symptoms :) Isn't it amazing that we actually look forward to our therapy each month??? (at least I do - heehee)...and kudos to you and your neuro for using Tysabri as a first line defense against your MS...wooohooo!
Re: your question:talked to my Nerologist's PA this morning and there is an agency in town that is ok'd with the Touch Program to administer the infusion at your home.
Your neuro's PA must be mistaken, as I just got off the phone with a MSActiveSource Supervisor (team leader) and asked her 'anonymously' if this were true as I didn't believe it. She advised me that Tysabri can only be administered at a Certified Infusion Center, pursuant to the TOUCH protocol, and they have certified no one to administer Tysabri at home.
Jen, you might let your neuro and/or his PA knows this as what the PA is mistakenly stating will more than likely confuse other MS and Tysabri patients.
But again dearheart, congrats and please keep us posted :)
((((((hugs))))))))
Lauren
MSNik
05-02-2007, 05:01 PM
Jenn,
Just wanted to say congrats to you. You sound very up and happy. Thats great to hear. I would follow Lauren's lead on the Certified to do this at home thing, shes more than likely right about what she told you. Do you think your PA is mixing up a regular infusion? I mean, I have an infusion nurse come to my home to administer Sterol Medrol and start my cath and IV....thats normal for me...but I dont think even if they let someone come to my home to do Tysabri I would let them.
The more I hear about you guys talking about this drug, the more sure I am that eventually I will be trying it. Im on Rebif, and tolerating it well...but only giving it 6 more months and one more MRI before I start asking more questions of my Specialist. Im still having minor relapses and often wonder if its the drug which isnt working as effectively as it should...like I said, 6 more months and we'll see..
but its soo good to know that you and Lauren are so optimistic. You give us all hope.
Hugs to both of you...and stay happy. Its contagious!
Nikki
Just wanted to say congrats to you. You sound very up and happy. Thats great to hear. I would follow Lauren's lead on the Certified to do this at home thing, shes more than likely right about what she told you. Do you think your PA is mixing up a regular infusion? I mean, I have an infusion nurse come to my home to administer Sterol Medrol and start my cath and IV....thats normal for me...but I dont think even if they let someone come to my home to do Tysabri I would let them.
The more I hear about you guys talking about this drug, the more sure I am that eventually I will be trying it. Im on Rebif, and tolerating it well...but only giving it 6 more months and one more MRI before I start asking more questions of my Specialist. Im still having minor relapses and often wonder if its the drug which isnt working as effectively as it should...like I said, 6 more months and we'll see..
but its soo good to know that you and Lauren are so optimistic. You give us all hope.
Hugs to both of you...and stay happy. Its contagious!
Nikki
purplegolfer
05-02-2007, 06:36 PM
Thank you all!! I knew I was going to the best place for "REAL" information. I will follow up with the PA- I thought it sounded kinda odd considering all the warnings with this drug. You guys have been a great source of info for me and I have been able to ease my close family's fears too with first account information. THANK YOU!!!!
MSNik
05-02-2007, 11:09 PM
Lauren, I feel the same way about you. Thank you. Its amazingly good to know that someone out there is on the same page. Tonight, I found out that my cat has renal failure..silly, I know, but Ive had her since she was 2 weeks old, she is 14 now and really, she is my baby. I dont have any children of my own, and although I raise my husbands kids, step children are NOT the same no matter know...this kitty, shes my baby and my sunshine. She got me thru some of the worst days 9 months ago, going thru Dx..Im terrified that im going to lose her, almost afraid to go to sleep....my husband has always hated my cat, and told me tongiht that he is counting down her days...horrible, huh? Overall, im having a minor breakdown tongiht..I really needed to read your words. Thank you.
Hugs to you Lauren..
Nik
Hugs to you Lauren..
Nik
Valo99
05-03-2007, 03:08 PM
I talked to my doctor about tysabri. he was all for it but said it's not anymore effective than copaxone. He said the numbers were better with combo therapy but the risk of PML was increased. He said considering the cost and how effective it was.. copaxone or avonex is just as good. But he said it was my choice.
I dont think tysabri is a miracle drug either, there is no cure for MS and I think this med like all other new MS meds, people jump on them thinking ohh newer = better!
It may help some people, but so do the other drugs. in the end the effectiveness of any of them or questionable.
I dont think tysabri is a miracle drug either, there is no cure for MS and I think this med like all other new MS meds, people jump on them thinking ohh newer = better!
It may help some people, but so do the other drugs. in the end the effectiveness of any of them or questionable.
Natatude
05-03-2007, 03:41 PM
Valo99 My neuro says that the Tysabri is way more effective than any of the ABCR's, even tho it only came out the first time in 2004. I have failed them all after 18 months of each. I can not wait to start the Tysabri, I have heard nothing but GREAT things about it and I pray it effects me the same way and helps me alot, I started working again last week and I am so excited about that! I pray the Tysabri gives me even more energy!
msladyinca
05-03-2007, 06:18 PM
(((((((((Nikki))))))))))))
Tonight, I found out that my cat has renal failure..silly, I know, but Ive had her since she was 2 weeks old, she is 14 now and really, she is my baby. I dont have any children of my own, and although I raise my husbands kids, step children are NOT the same no matter know...this kitty, shes my baby and my sunshine. She got me thru some of the worst days 9 months ago, going thru Dx..Im terrified that im going to lose her, almost afraid to go to sleep....my husband has always hated my cat, and told me tongiht that he is counting down her days...horrible, huh? Overall, im having a minor breakdown tongiht
Oh I'm sooooo sorry :( Allow me to please commiserate with you, so you don't feel so alone...I have a kitty too, she'll be 14 in July and I've had her since she was a baby also - my ex and I got her and her brother shortly after the '94 Northridge Earthquake (and we were at the epicenter!). She's my baby too as I don't any children whatsoever, not even from my 26 year marriage that ended in December 2006, and today - 5/3 - would have been my 27th Wedding Anniversary :( And My ex took her brother (perfectly healthy & such a little love bug) to the pound to be destroyed in 2003 just to hurt me during our divorce.
She is ALL I have left and we've been through a lot, just like you and your baby....a couple of days after Valentines Day this year, she started losing her eyesight, poor baby. I know I'll be a worthless lump of MS flesh & bones when it's her time and she passes as I don't think I can bear the empty hole in my heart, but I take great comfort in knowing that when she's gone, she won't be suffering anymore & she'll be greeted by my mom who will love her, and she'll be greeted by her brother when she arrives in Heaven :angel: ...plus, when my time comes, I'll see her again and all my beloved children (pets) that I've lost over the years - and we'll be reunited for eternity, never to be separated again.
Take care Nikki, try not to stress too much (I know, easier said than done). I'd just hate for you to have a relapse over the emotional upheaval your going through.
I'm not a very religious person, but I am a very spiritual one...I pray God gives you whatever strength you need to get through this Nikki.
(((((((((((((((((((((((((((((many, many hugs))))))))))))))))))))))))))))
Lauren
Tonight, I found out that my cat has renal failure..silly, I know, but Ive had her since she was 2 weeks old, she is 14 now and really, she is my baby. I dont have any children of my own, and although I raise my husbands kids, step children are NOT the same no matter know...this kitty, shes my baby and my sunshine. She got me thru some of the worst days 9 months ago, going thru Dx..Im terrified that im going to lose her, almost afraid to go to sleep....my husband has always hated my cat, and told me tongiht that he is counting down her days...horrible, huh? Overall, im having a minor breakdown tongiht
Oh I'm sooooo sorry :( Allow me to please commiserate with you, so you don't feel so alone...I have a kitty too, she'll be 14 in July and I've had her since she was a baby also - my ex and I got her and her brother shortly after the '94 Northridge Earthquake (and we were at the epicenter!). She's my baby too as I don't any children whatsoever, not even from my 26 year marriage that ended in December 2006, and today - 5/3 - would have been my 27th Wedding Anniversary :( And My ex took her brother (perfectly healthy & such a little love bug) to the pound to be destroyed in 2003 just to hurt me during our divorce.
She is ALL I have left and we've been through a lot, just like you and your baby....a couple of days after Valentines Day this year, she started losing her eyesight, poor baby. I know I'll be a worthless lump of MS flesh & bones when it's her time and she passes as I don't think I can bear the empty hole in my heart, but I take great comfort in knowing that when she's gone, she won't be suffering anymore & she'll be greeted by my mom who will love her, and she'll be greeted by her brother when she arrives in Heaven :angel: ...plus, when my time comes, I'll see her again and all my beloved children (pets) that I've lost over the years - and we'll be reunited for eternity, never to be separated again.
Take care Nikki, try not to stress too much (I know, easier said than done). I'd just hate for you to have a relapse over the emotional upheaval your going through.
I'm not a very religious person, but I am a very spiritual one...I pray God gives you whatever strength you need to get through this Nikki.
(((((((((((((((((((((((((((((many, many hugs))))))))))))))))))))))))))))
Lauren
Valo99
05-03-2007, 06:36 PM
I have been on copaxone for over 7 years and doing fine on it. Now it probably is my MS just laying low. Honestly, it's difficult to say the copaxone has kept my MS quiet all these years. I had one heck of an attack.. I was as good as dead. I think some of you know what thats like.
O might look further into tysabri, but not a priorety now.
O might look further into tysabri, but not a priorety now.
msladyinca
05-03-2007, 07:40 PM
I know exactly what that's like Valo99, and I pray Copaxone keeps you safe for many more years.
Again, good luck and best wishes, always.
Lauren :)
Again, good luck and best wishes, always.
Lauren :)
MSNik
05-04-2007, 09:07 AM
HORRAY. Im not crazy. I really thought I was missing something when reading that..thanks, Lauren!!
I did reach the TOUCH safety study and was impressed. Im telling you, if things dont stay good, or dont stay AS good, Im going to be asking about your drug of choice...Tysabri sounds like a heck of alot easier to manage then Rebif, too....I like the analogy, Avonex with a kick! Having never been on Avonex, I didnt know it didnt burn like Rebif does...no one ever told me that. Interesting. Rebif burns, for about 10 seconds..you get used to it. I dont even think about it anymore...
as for the hubby and jealousy. Hey, I told him, Ive had the cat for close to 14 years. WHen I have had him for 14 years, we will negotiate- until then the cat is MY baby, and he is to undertand that. He says he does..but he acts like he could care less. Yeh, he is jealous of the attention I give the cat..last night I told him to pretend he is practicing for when I need extra help and attention! That got pretty much ignored..
Okay, off to the vet of all things...going to be a high stress day for both of us (me and the cat)...hugs to you..
Nik
I did reach the TOUCH safety study and was impressed. Im telling you, if things dont stay good, or dont stay AS good, Im going to be asking about your drug of choice...Tysabri sounds like a heck of alot easier to manage then Rebif, too....I like the analogy, Avonex with a kick! Having never been on Avonex, I didnt know it didnt burn like Rebif does...no one ever told me that. Interesting. Rebif burns, for about 10 seconds..you get used to it. I dont even think about it anymore...
as for the hubby and jealousy. Hey, I told him, Ive had the cat for close to 14 years. WHen I have had him for 14 years, we will negotiate- until then the cat is MY baby, and he is to undertand that. He says he does..but he acts like he could care less. Yeh, he is jealous of the attention I give the cat..last night I told him to pretend he is practicing for when I need extra help and attention! That got pretty much ignored..
Okay, off to the vet of all things...going to be a high stress day for both of us (me and the cat)...hugs to you..
Nik
candle66
05-04-2007, 10:11 AM
What I see here is a lot of scared people which is understandable. I been battling this beast for 20 years. I still lives a fairly normal life, ups and downs. I have researched tysabri, I don't undertsnad why people are acting like this is some kind of wonder drug? Maybe because it's new? maybe because there are people throwing misc numbers out about it's effectivness? We just eat it up and accept it? Some complain that our neuros are bad because they wont or dont prescribe it? others are saying their nuros want them on it ASAP because it's the best thing out there?
I know a few of you have been in the MS biz as long as me or longer. Heck I rememebr when beta came out and people are beating down doors to get it because people weere walking again taking it and going back to work! Same with Avonex etc...
I know what it's like to believe anything, anything and anyone when they have some positvie feedback about a drug. it took me many years to walk away from all that and not buy unto the new and improved sales approach.
I know a few of you have been in the MS biz as long as me or longer. Heck I rememebr when beta came out and people are beating down doors to get it because people weere walking again taking it and going back to work! Same with Avonex etc...
I know what it's like to believe anything, anything and anyone when they have some positvie feedback about a drug. it took me many years to walk away from all that and not buy unto the new and improved sales approach.
MSNik
05-04-2007, 11:40 AM
Candle:
I dont think its so much a sales approach and studies which are showing success. Im in sales. When I make a sale, its a sales approach which is succeful, but it doesnt change anyone's life. When a drug comes out which shows the success that Tysabri is showing for certain patients, Id call that a success story, not a sales approach.
Personally, IM not on Tysabri, however, as a person who is progressing much faster than the doctors thought possible, until we know FOR SURE if my Rebif is kicking in and doing what it appears it is doing; Im not ruling out asking to try Tysabri. Since its re-release, it appears that patients are experiencing some pretty wonderful success. Why wouldnt I try it?
You arent on any medication, Candle 66? You say you have had MS a long time...how is your health and your level of disability? Im just curious.
I wish you good health and happy days.
Nikki
I dont think its so much a sales approach and studies which are showing success. Im in sales. When I make a sale, its a sales approach which is succeful, but it doesnt change anyone's life. When a drug comes out which shows the success that Tysabri is showing for certain patients, Id call that a success story, not a sales approach.
Personally, IM not on Tysabri, however, as a person who is progressing much faster than the doctors thought possible, until we know FOR SURE if my Rebif is kicking in and doing what it appears it is doing; Im not ruling out asking to try Tysabri. Since its re-release, it appears that patients are experiencing some pretty wonderful success. Why wouldnt I try it?
You arent on any medication, Candle 66? You say you have had MS a long time...how is your health and your level of disability? Im just curious.
I wish you good health and happy days.
Nikki
candle66
05-04-2007, 12:28 PM
I have been on copaxone for years, I was on avonex for a few months prior. I went years without medication.
Right now, I am fine overall. I just had a baby at 41, without any problems.
I was dx 20 years ago.. I been numb from the waste down,,. blind for 9 months, dizzy I couldnt walk for 6 monthsm weakness etc. I recovered from all. today the damage I have left is my vision in my left eye is a 9 out of 10. they cant correct it to 20/20.
believe me, I want nothing more than a drug to stop this beast. I have a baby now that needs me and I want to see her grow up and not be disabled. I am not even sure thats a reality. I been lucky so far.. but for how long?
I have thought about going on tysabri, but I did research and I agree, without it being a combo therapy.. the numbers are not as good!!! I HAVE researched this. I don't want to make this a debate or am I the only one that found this out. It's the combo therapy that was possibly giving people the PML. yes the numbers were much better with combo. not the tysabi used alone.
Tysabi is just another MS treatment, it is not really better.
Right now, I am fine overall. I just had a baby at 41, without any problems.
I was dx 20 years ago.. I been numb from the waste down,,. blind for 9 months, dizzy I couldnt walk for 6 monthsm weakness etc. I recovered from all. today the damage I have left is my vision in my left eye is a 9 out of 10. they cant correct it to 20/20.
believe me, I want nothing more than a drug to stop this beast. I have a baby now that needs me and I want to see her grow up and not be disabled. I am not even sure thats a reality. I been lucky so far.. but for how long?
I have thought about going on tysabri, but I did research and I agree, without it being a combo therapy.. the numbers are not as good!!! I HAVE researched this. I don't want to make this a debate or am I the only one that found this out. It's the combo therapy that was possibly giving people the PML. yes the numbers were much better with combo. not the tysabi used alone.
Tysabi is just another MS treatment, it is not really better.
msladyinca
05-04-2007, 01:07 PM
Good luck at the vet Nikki!
Whatever happens, I truly believe that everything happens for a reason.
(((hugs)))
Lauren :wave:
Whatever happens, I truly believe that everything happens for a reason.
(((hugs)))
Lauren :wave:
Lynda73
05-10-2007, 12:14 PM
Hello msladyinca,
You had asked that I post my update in the Tysabri talk thread. Hear it is and all is well. Thanks for responding to my post the support is greatly appreciated.
........
I wanted to give you an update as well as say THANK YOU to those who replied to my original post. My husband, bless him, was able to sort the insurance business out and I was given my first injection of Tysabri on the
5th of May. I am pleased to report that I have not had any problems thus far. I am hopeful that this medicine will stop the lesions from occuring.
Thanks again for your support.
Lynda73
You had asked that I post my update in the Tysabri talk thread. Hear it is and all is well. Thanks for responding to my post the support is greatly appreciated.
........
I wanted to give you an update as well as say THANK YOU to those who replied to my original post. My husband, bless him, was able to sort the insurance business out and I was given my first injection of Tysabri on the
5th of May. I am pleased to report that I have not had any problems thus far. I am hopeful that this medicine will stop the lesions from occuring.
Thanks again for your support.
Lynda73
msladyinca
05-10-2007, 01:00 PM
Oh how wonderful Linda! :D
Bless your DH's heart....and thank you for posting on this thread for others to read.
I hope you experience terrific results from your infusions..., keep us all posted on your progress, please.
Take care dearheart.
(((((hugs)))))
Lauren :wave:
Bless your DH's heart....and thank you for posting on this thread for others to read.
I hope you experience terrific results from your infusions..., keep us all posted on your progress, please.
Take care dearheart.
(((((hugs)))))
Lauren :wave:
Karen8550
05-11-2007, 10:01 AM
hi I am having my first infusion today and am so excited to start. Thanks for all your great info. it has truely helped me. I hope I am not too excited for day one as I do know results may take time. Good luck to all!....Karen
msladyinca
05-11-2007, 02:25 PM
Hi Karen,
Good luck to you as well!
Please keep us all posted as well,
Lauren :wave:
Good luck to you as well!
Please keep us all posted as well,
Lauren :wave:
onlyjulie
05-11-2007, 03:33 PM
Is this kinda like a plasma exchange??
Newbie to all of this...
Julie
Newbie to all of this...
Julie
msladyinca
05-11-2007, 04:42 PM
Hi Julie,
Is this kinda like a plasma exchange??
No, not at all...it's more like an IV Solu-medrol infusion...nothing is removed as in a plasma exchange.
A very brief explanation from what I know (I'm not a dr): Tysabri is infused into the body (through the vein) and it is specifically designed to adhere/attach itself to the inflammatory T-cells which are crossing the Blood Brain Barrier (BBB) and entering the Central Nervous System (CNS) where the T-cells see our myelin as foreign, and start to attack it, causing axonal loss (relapses/damage/eventual disability), from which some of us never fully recover.
This is why it is in a new class of drugs called monoclonal antibodies, as it acts differently than the ABCR-shots, and is the newest of the DMDs (Disease Modifying Drugs) approved by the FDA to treat relapsing forms of MS in over a decade.
You should ask your neurologist/treating doctor to fully explain Tysabri to you.
I hope this information helps.
Lauren :)
Is this kinda like a plasma exchange??
No, not at all...it's more like an IV Solu-medrol infusion...nothing is removed as in a plasma exchange.
A very brief explanation from what I know (I'm not a dr): Tysabri is infused into the body (through the vein) and it is specifically designed to adhere/attach itself to the inflammatory T-cells which are crossing the Blood Brain Barrier (BBB) and entering the Central Nervous System (CNS) where the T-cells see our myelin as foreign, and start to attack it, causing axonal loss (relapses/damage/eventual disability), from which some of us never fully recover.
This is why it is in a new class of drugs called monoclonal antibodies, as it acts differently than the ABCR-shots, and is the newest of the DMDs (Disease Modifying Drugs) approved by the FDA to treat relapsing forms of MS in over a decade.
You should ask your neurologist/treating doctor to fully explain Tysabri to you.
I hope this information helps.
Lauren :)
msladyinca
05-17-2007, 08:16 PM
8th Tysabri Infusion Update...
I had my 8th Tysabri infusion Wednesday, and after a long rest when I returned home - I feel wonderful today, wooohooo!
When I asked my infusion nurse how many MS patients they are treating with Tysabri, she told me that they are currently infusing approximately 15 - 20 patients, and adding more weekly. She also said that some patients are afraid of this 'new' drug. Rut roh...., I immediately gave her the FULL Lauren, as one of my friends so entitled it - lol ;) .
To make a long story short, when I said there were over 10,000 of us currently receiving Tysabri that weren't scared of Tysabri, I noticed there were approximately 6 other Certified Infusion nurses gathered around listening.
I asked them, where are the cases of PML in non-immune compromised MS patients receiving Tysabri as a monotherapy?
Why are some of the MS patients that don't have permanent disability from this dreadful progressive disease noticing improvements in their symptoms from their Tysabri infusion?
Why aren't others like me having increased disease progression and more relapses while on Tysabri?
Why aren't ALL of us on Tysabri getting worse?
I gave them the truth about Tysabri so that they could educate other patients and other professionals in the medical community.
My main point to them was that Tysabri's superior efficacy of 67% and three year safety data has been basically surrounded in a cloud of doubt by false and misleading information purposely created by the various media outlets and Tysabri's competetors, imho.
However, many patients are hearing the truth about Tysabri from other patients, and slowly given the option of switching to Tysabri by their neuros after fully discussing same with them.
MS patients and their treating physicans are listening.
Additionally, there are many others (some of you) that are challenging these 'falsehoods' and not just sitting by watching, they are doing something and becoming involved - with others becoming unknowing patient advocates for the uninformed by offering/talking about accurate Tysabri information to patients they meet, neighbors, family and friends.
My HOPES remain to improve with Tysabri because so far, I haven't become worse! - Wooooohooooo!
No matter what MS therapy each of you are on, I wish you nothing but improving health, and I'm sending many ((((((hugs)))))) your way (not 'MS hug'[s] though - heehee).
Lauren :wave:
I had my 8th Tysabri infusion Wednesday, and after a long rest when I returned home - I feel wonderful today, wooohooo!
When I asked my infusion nurse how many MS patients they are treating with Tysabri, she told me that they are currently infusing approximately 15 - 20 patients, and adding more weekly. She also said that some patients are afraid of this 'new' drug. Rut roh...., I immediately gave her the FULL Lauren, as one of my friends so entitled it - lol ;) .
To make a long story short, when I said there were over 10,000 of us currently receiving Tysabri that weren't scared of Tysabri, I noticed there were approximately 6 other Certified Infusion nurses gathered around listening.
I asked them, where are the cases of PML in non-immune compromised MS patients receiving Tysabri as a monotherapy?
Why are some of the MS patients that don't have permanent disability from this dreadful progressive disease noticing improvements in their symptoms from their Tysabri infusion?
Why aren't others like me having increased disease progression and more relapses while on Tysabri?
Why aren't ALL of us on Tysabri getting worse?
I gave them the truth about Tysabri so that they could educate other patients and other professionals in the medical community.
My main point to them was that Tysabri's superior efficacy of 67% and three year safety data has been basically surrounded in a cloud of doubt by false and misleading information purposely created by the various media outlets and Tysabri's competetors, imho.
However, many patients are hearing the truth about Tysabri from other patients, and slowly given the option of switching to Tysabri by their neuros after fully discussing same with them.
MS patients and their treating physicans are listening.
Additionally, there are many others (some of you) that are challenging these 'falsehoods' and not just sitting by watching, they are doing something and becoming involved - with others becoming unknowing patient advocates for the uninformed by offering/talking about accurate Tysabri information to patients they meet, neighbors, family and friends.
My HOPES remain to improve with Tysabri because so far, I haven't become worse! - Wooooohooooo!
No matter what MS therapy each of you are on, I wish you nothing but improving health, and I'm sending many ((((((hugs)))))) your way (not 'MS hug'[s] though - heehee).
Lauren :wave:
onlyjulie
05-17-2007, 08:39 PM
Thank you Lauren for responding to this. I havent been here for awhile, to say Thank you right away for the information.
Julie
Hi Julie,
No, not at all...it's more like an IV Solu-medrol infusion...nothing is removed as in a plasma exchange.
A very brief explanation from what I know (I'm not a dr): Tysabri is infused into the body (through the vein) and it is specifically designed to adhere/attach itself to the inflammatory T-cells which are crossing the Blood Brain Barrier (BBB) and entering the Central Nervous System (CNS) where the T-cells see our myelin as foreign, and start to attack it, causing axonal loss (relapses/damage/eventual disability), from which some of us never fully recover.
This is why it is in a new class of drugs called monoclonal antibodies, as it acts differently than the ABCR-shots, and is the newest of the DMDs (Disease Modifying Drugs) approved by the FDA to treat relapsing forms of MS in over a decade.
You should ask your neurologist/treating doctor to fully explain Tysabri to you.
I hope this information helps.
Lauren :)
Julie
Hi Julie,
No, not at all...it's more like an IV Solu-medrol infusion...nothing is removed as in a plasma exchange.
A very brief explanation from what I know (I'm not a dr): Tysabri is infused into the body (through the vein) and it is specifically designed to adhere/attach itself to the inflammatory T-cells which are crossing the Blood Brain Barrier (BBB) and entering the Central Nervous System (CNS) where the T-cells see our myelin as foreign, and start to attack it, causing axonal loss (relapses/damage/eventual disability), from which some of us never fully recover.
This is why it is in a new class of drugs called monoclonal antibodies, as it acts differently than the ABCR-shots, and is the newest of the DMDs (Disease Modifying Drugs) approved by the FDA to treat relapsing forms of MS in over a decade.
You should ask your neurologist/treating doctor to fully explain Tysabri to you.
I hope this information helps.
Lauren :)
msladyinca
05-17-2007, 09:18 PM
Awww Julie, you are more than welcome, dearheart.
Just glad it helped, take care now,
(((((hugs)))))
Lauren :)
Just glad it helped, take care now,
(((((hugs)))))
Lauren :)
Karen8550
05-18-2007, 10:25 AM
I am now going on a pill form of tysabri research study any body heard of this? Karen
msladyinca
05-18-2007, 04:11 PM
Hi Karen :)
I am now going on a pill form of tysabri research study any body heard of this? Karen
Are you referring to FTY-720? If so, that is not Tysabri in a pill form...do you know the name of the drug? Or the name of the manufacturer? Or the name of the trial?
Lauren
I am now going on a pill form of tysabri research study any body heard of this? Karen
Are you referring to FTY-720? If so, that is not Tysabri in a pill form...do you know the name of the drug? Or the name of the manufacturer? Or the name of the trial?
Lauren
Karen8550
05-19-2007, 10:47 AM
Hi, My doctor says it is tysabri in pill form if I don't get the placebo. It is not the one you mentioned. The studies are all different I guess. I am on it for 6 Mos. and then everyone gets the actual pill at no cost until it is FDA approved which could take years if ever. I am scared but am going to do it. I will keep you posted.
msladyinca
05-19-2007, 01:43 PM
Hi Karen,
Thank you for your reply. I believe your Neuro is 'over-simplifying' the trial you are entering as Tysabri does not currently have any enrollment in an oral pill trial. Biogen and Elan own Tysabri 50/50, however Tysabri® (natalizumab) is a Registered Trademark of Elan Pharmaceuticals, and no one but Elan can use the name "Tysabri". (which is a VLA-4 inhibitor/antagonist).
Please note Karen, he is more than likely referring to Biogen's CDP323 (which is also a VLA-4 inhibitor/antagonist). They are currently testing CDP323 in a drug program (trial) partnered with UCB.
The oral "version" of a VLA-4 inhibitor has completed phase I trials, where 7-day analyses of safety and tolerability was done in 75 healthy volunteers. Phase II studies are expected to start “momentarily” (which is probably the trial that you are enrolled in).
I think you are very brave to be a 'test subject' for all of us suffering with MS, and I want to give you a BIG HUG and a BIG THANK YOU!
Please keep us all posted :)
(((((((hugs)))))))
Lauren
Thank you for your reply. I believe your Neuro is 'over-simplifying' the trial you are entering as Tysabri does not currently have any enrollment in an oral pill trial. Biogen and Elan own Tysabri 50/50, however Tysabri® (natalizumab) is a Registered Trademark of Elan Pharmaceuticals, and no one but Elan can use the name "Tysabri". (which is a VLA-4 inhibitor/antagonist).
Please note Karen, he is more than likely referring to Biogen's CDP323 (which is also a VLA-4 inhibitor/antagonist). They are currently testing CDP323 in a drug program (trial) partnered with UCB.
The oral "version" of a VLA-4 inhibitor has completed phase I trials, where 7-day analyses of safety and tolerability was done in 75 healthy volunteers. Phase II studies are expected to start “momentarily” (which is probably the trial that you are enrolled in).
I think you are very brave to be a 'test subject' for all of us suffering with MS, and I want to give you a BIG HUG and a BIG THANK YOU!
Please keep us all posted :)
(((((((hugs)))))))
Lauren
NarLyB
05-21-2007, 03:07 PM
After about two months of waiting for the TOUCH program, the infusion clinic and my insurance to get everything in line, I will be having my first infusion this Friday.
I won't lie. I am a little nervous, but I am also very excited. Everyone that I have talked to or read about on different message boards, has had nothing but good things to say. The only negatives have been from people who have never tried it.
For those naysayers who have never tried it but insist on spewing negativity, how can you have an opinion about anything if you have never experienced it yourself?
There is nothing wrong with having hope and trying something new. It's definitely better (imho) than continuing on the same path.
I heard once that the definition of insanity is conintually doing the same thing while expecting different results.
Well, I'm not insane (although I am a little nuts, but aren't we all) and I'm definitely open to new options. Anything is better than a steady decline!
Narda
dx 1993
I won't lie. I am a little nervous, but I am also very excited. Everyone that I have talked to or read about on different message boards, has had nothing but good things to say. The only negatives have been from people who have never tried it.
For those naysayers who have never tried it but insist on spewing negativity, how can you have an opinion about anything if you have never experienced it yourself?
There is nothing wrong with having hope and trying something new. It's definitely better (imho) than continuing on the same path.
I heard once that the definition of insanity is conintually doing the same thing while expecting different results.
Well, I'm not insane (although I am a little nuts, but aren't we all) and I'm definitely open to new options. Anything is better than a steady decline!
Narda
dx 1993
msladyinca
05-21-2007, 03:50 PM
Hi Narda :)
Congratulations to you! I hope and pray everything goes smoothly for you Friday, and that you experience good results from Tysabri.
I couldn't agree with you more about the negativity spewed about Tysabri from those that haven't even tried it yet...I suppose that's their way of easing their unfounded and unsubstantiated fears by passing said fear on to the uninformed MS patients, or perhaps they work for Tysabri's competitors? (I'd hate to think that they would put a monitary profit above suffering MS patients, but it's been done before, unfortunately). :(
Big kudos to you dearheart for being your own well-informed patient advocate.
Good luck Friday, and keep us posted please...welcome to the Tysabri Train!
Lauren :wave:
Congratulations to you! I hope and pray everything goes smoothly for you Friday, and that you experience good results from Tysabri.
I couldn't agree with you more about the negativity spewed about Tysabri from those that haven't even tried it yet...I suppose that's their way of easing their unfounded and unsubstantiated fears by passing said fear on to the uninformed MS patients, or perhaps they work for Tysabri's competitors? (I'd hate to think that they would put a monitary profit above suffering MS patients, but it's been done before, unfortunately). :(
Big kudos to you dearheart for being your own well-informed patient advocate.
Good luck Friday, and keep us posted please...welcome to the Tysabri Train!
Lauren :wave:
ewizabeth
05-24-2007, 11:31 AM
I am now going on a pill form of tysabri research study any body heard of this? Karen
Hi Karen,
Is the pill called CDP323? I was going to be in that study but changed my mind. I'll be going on Tysabri instead. My MS neuro who has been studying these meds for nearly 30 years thinks CDP323 has great potential. He said it will have the actions of Tysabri, but a one day half life, making it safer to take, cheaper (because it's a pill) and likely just as effective. He was very disappointed that I changed my mind about the study.
BTW, I'm new here, but a member of other MS sites. :)
Take care,
Ewizabeth
Hi Karen,
Is the pill called CDP323? I was going to be in that study but changed my mind. I'll be going on Tysabri instead. My MS neuro who has been studying these meds for nearly 30 years thinks CDP323 has great potential. He said it will have the actions of Tysabri, but a one day half life, making it safer to take, cheaper (because it's a pill) and likely just as effective. He was very disappointed that I changed my mind about the study.
BTW, I'm new here, but a member of other MS sites. :)
Take care,
Ewizabeth
ewizabeth
05-24-2007, 11:43 AM
These are my opinions and experiences only (not medical advice) with MS & Tysabri.
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts from Tysabri MS patients that are not achieving/feeling the same results of symptom improvement(s) as others have, and are becoming disheartened. So this post is for them, and for "newbies" to both MS and Tysabri:
For the disheartened: please try to remember 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 3) If your disease has not progressed and you have no new symptoms since starting Tysabri, it's apparently working for you! Tysabri's label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Hi Lauren,
I'm so glad to hear you are doing better on Tysabri. I'll be starting it on June 4 so wish me luck! I hope it gives me more time to work since I have been on a slow decline. Maybe I'll be one of the lucky ones that gets some symptom relief as well. By the way, I took some of the color out when I quoted you, as it hurts my eyes a bit to read it...
7th Tysabri Infusion Update:
I had my 7th Tysabri infusion on 4/18/07, and right now, right at this moment, I feel terrific! Woohoo!
I have read a small handful of posts from Tysabri MS patients that are not achieving/feeling the same results of symptom improvement(s) as others have, and are becoming disheartened. So this post is for them, and for "newbies" to both MS and Tysabri:
For the disheartened: please try to remember 3 things - 1) The current level of your MS and disability did not happen overnight, therefore you must learn patience in your Tysabri treatments; 2) Tysabri is not a cure for MS or for your symptoms (especially if those disabilities are permanent); 3) If your disease has not progressed and you have no new symptoms since starting Tysabri, it's apparently working for you! Tysabri's label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."
Hi Lauren,
I'm so glad to hear you are doing better on Tysabri. I'll be starting it on June 4 so wish me luck! I hope it gives me more time to work since I have been on a slow decline. Maybe I'll be one of the lucky ones that gets some symptom relief as well. By the way, I took some of the color out when I quoted you, as it hurts my eyes a bit to read it...
NarLyB
05-25-2007, 02:00 PM
Okay, so this afternoon I will be receiving my first infusion of Tysabri, and although I was a little nervous before, I'm getting even more nervous now.
I think the last thing I need to do is have an anxiety attack the day I'm going to start a new treatment!
My best friend is going to take me to the infusion center, so at least I won't be alone.
Any words of encouragement are greatly appreciated! :eek:
I think the last thing I need to do is have an anxiety attack the day I'm going to start a new treatment!
My best friend is going to take me to the infusion center, so at least I won't be alone.
Any words of encouragement are greatly appreciated! :eek:
ewizabeth
05-26-2007, 01:36 PM
NarlyB,
How did your first infusion day go? You weren't too nervous I hope? I won't be too nervous (I'm hoping!) but I've had to deal with IV's fairly often in the last several years.
How did your first infusion day go? You weren't too nervous I hope? I won't be too nervous (I'm hoping!) but I've had to deal with IV's fairly often in the last several years.
NarLyB
05-30-2007, 04:23 PM
Sorry, I've been battling allergies for the last few days (I really hate Cottonwood Trees!!!!!).
The first infusion went fine. It took a lot longer because the pharmacy in the hospital took about an hour to finally get the Tysabri to the infusion clinic. That's typical for that hospital though. We have a new hospital that is part of a better medical system and I'm hoping that they'll get TOUCH certified. I'll be writing letters to them to help nudge it along.
No problems during or after the infusion. My legs were stiff when I finally got out of there, but I figure that is from sitting in that horrible medical recliner in the infusion room. Hopefully next time I'll get one of the rooms with a Lazy Boy!
And some really good news! The nurse that stuck me found a vein right off! I have horrible, small veins. She got me on the first try without any digging or bruising.
I made my appointment for my next infusion on June 22. I know that other people have begun feeling more energy after an infusion and I would love that. I'd be happy as long as it stops any more flare-ups. Making me feel better would just be a bonus.
The first infusion went fine. It took a lot longer because the pharmacy in the hospital took about an hour to finally get the Tysabri to the infusion clinic. That's typical for that hospital though. We have a new hospital that is part of a better medical system and I'm hoping that they'll get TOUCH certified. I'll be writing letters to them to help nudge it along.
No problems during or after the infusion. My legs were stiff when I finally got out of there, but I figure that is from sitting in that horrible medical recliner in the infusion room. Hopefully next time I'll get one of the rooms with a Lazy Boy!
And some really good news! The nurse that stuck me found a vein right off! I have horrible, small veins. She got me on the first try without any digging or bruising.
I made my appointment for my next infusion on June 22. I know that other people have begun feeling more energy after an infusion and I would love that. I'd be happy as long as it stops any more flare-ups. Making me feel better would just be a bonus.
msladyinca
05-31-2007, 05:11 PM
That's WONDERFUL Narly!!! (I wonder if Tysabri will help your allergies too-heehee).
Keep us posted, please...,
((((hugs))))
Lauren:wave:
Keep us posted, please...,
((((hugs))))
Lauren:wave:
Loge
06-01-2007, 02:03 AM
Hi, I am happy that I am about to restart my Tysabri treatment! My multiple sclerosis is early stage, but I also have active Crohn's disease.:dizzy: Tysabri is the dream drug for me, since it hits both at once. Without Tysabri, I would have to take two separate drugs, one for each disease, without much clinical data to support the safety of the combination.
I had two infusions earlier this year, and after each I had a similar reaction... I felt slightly euphoric on the same day, a little odd on the next few days, then really nice until a week before the next infusion was due.
Unfortunately, I had to make a sudden move, and my new neurologist (an HMO, so little selection possible) was very opposed to the Tysabri, and refused to discuss continuing it until I had had office consults with another GI doc, had an MRI, and made another office visit with him.:nono:
All that was taking some time, and I went four weeks beyond when I would have had my next infusion. THEN... I just had another sudden Crohn's flare (sudden large blood loss), resulting in hospitalization. I'm out and OK now, just drained (literally) from the temporary anemia.
The happy ending... I've been told that my neurologist has agreed to put me back on the Tysabri.:D
It's a lot cheaper for my HMO to pay for Tysabri than it is to pay for hospitalizations.
I had two infusions earlier this year, and after each I had a similar reaction... I felt slightly euphoric on the same day, a little odd on the next few days, then really nice until a week before the next infusion was due.
Unfortunately, I had to make a sudden move, and my new neurologist (an HMO, so little selection possible) was very opposed to the Tysabri, and refused to discuss continuing it until I had had office consults with another GI doc, had an MRI, and made another office visit with him.:nono:
All that was taking some time, and I went four weeks beyond when I would have had my next infusion. THEN... I just had another sudden Crohn's flare (sudden large blood loss), resulting in hospitalization. I'm out and OK now, just drained (literally) from the temporary anemia.
The happy ending... I've been told that my neurologist has agreed to put me back on the Tysabri.:D
It's a lot cheaper for my HMO to pay for Tysabri than it is to pay for hospitalizations.
msladyinca
06-01-2007, 01:52 PM
Oh Loge, that's just soooooo wonderful!
Please keep us all posted, ok?
(((((hugs))))))
Lauren :wave:
Please keep us all posted, ok?
(((((hugs))))))
Lauren :wave:
NarLyB
06-04-2007, 01:05 PM
If you have Crohn's, then you need to talk to your neuro ASAP. Since Crohn's is a disease that can disrupt the immune system, Tysabri could cause serious problems.
Read all documentation that there is. You will find that one of the problems with Tysabri when it was first introduced, was with a patient that had Crohn's.
I'm not trying to scare you, I just want you to be safe.
Read all documentation that there is. You will find that one of the problems with Tysabri when it was first introduced, was with a patient that had Crohn's.
I'm not trying to scare you, I just want you to be safe.
NarLyB
06-04-2007, 11:37 PM
No need to jump down my throat Lauren.
I just wanted that person to make sure that both doctors know EVERYTHING before the decision is made. Nowhere did she mention that her neuro and GI had ever TALKED to each other. Just that she had been seeing each.
I just wanted that person to make sure that both doctors know EVERYTHING before the decision is made. Nowhere did she mention that her neuro and GI had ever TALKED to each other. Just that she had been seeing each.
ewizabeth
06-05-2007, 12:36 AM
Lauren,
With all due respect, each patient is different and it isn't wise to get information about Tysabri or other treatments solely from an MS posting board. As far as Tysabri is concerned, it's best to discuss it with a neurologist, or an MS neurologist if possible. There are some risks, and that's why the heavy warning labels on the drug and the inserts and the TOUCH protocol.
It is not to be taken lightly, because they simply do not know for sure why the patients that got PML did, or, how many more there will be (hopefully none!)
BTW, I'm not against Tysabri, I took my first infusion today... :-D and it went very well. But I'm certainly not going to try to talk others into taking it, or promote it, that is something that needs to be done between the patient, their family and doctors.
With all due respect, each patient is different and it isn't wise to get information about Tysabri or other treatments solely from an MS posting board. As far as Tysabri is concerned, it's best to discuss it with a neurologist, or an MS neurologist if possible. There are some risks, and that's why the heavy warning labels on the drug and the inserts and the TOUCH protocol.
It is not to be taken lightly, because they simply do not know for sure why the patients that got PML did, or, how many more there will be (hopefully none!)
BTW, I'm not against Tysabri, I took my first infusion today... :-D and it went very well. But I'm certainly not going to try to talk others into taking it, or promote it, that is something that needs to be done between the patient, their family and doctors.
Loge
06-05-2007, 12:58 AM
If you have Crohn's, then you need to talk to your neuro ASAP. Since Crohn's is a disease that can disrupt the immune system, Tysabri could cause serious problems.
Read all documentation that there is. You will find that one of the problems with Tysabri when it was first introduced, was with a patient that had Crohn's.
I'm not trying to scare you, I just want you to be safe.
I appreciate your concern... I am actually pretty knowledgeable about this, and I am consulting with multiple specialists. My gastroenterologist and neurologist are in close collaboration.
Crohn's does not "disrupt" the immune system... Crohn's IS a disruption of the immune system, just like multiple sclerosis. In both diseases, the immune system incorrectly attacks healthy body tissue. Tysabri is an excellent medication for Crohn's and is approved for Crohn's in Europe, and is on the verge of approval here in the USA as well. Tysabri is also an excellent medication for multiple sclerosis. It directly impairs the ability of the immune system to target specific tissues, and so it works for MS and Crohn's in the same way.
The problem you refer to was a patient with Crohn's, who had been taking a strong immune suppressant for six years previously, and had a very compromised immune system. He was taking Tysabri for his Crohn's (he didn't have MS). This patient is one of the three people (out of close to 20,000) who have contracted PML. The other two people were taking Avonex and Tysabri concurrently, so presumably they had MS. Thousands of patients have been given Tysabri as primary treatment for their Crohn's with no problems.
So, I believe your warnings, although well-intentioned, are misguided. Having Crohn's and MS both is certainly a bummer, but there is no reason to think that my prognosis with respect to the MS is any worse off because of the Crohn's. And there is no reason to think that my risk of PML from Tysabri is any higher than if I did not have Crohn's. And by the way, from the statistical evidence we have so far, that risk is probably less than 1 in 10,000.
I see Tysabri as a godsend... I have two serious conditions, both of which need to be treated with strong medications. And Tysabri works for both! If I could not take Tysabri, I would have to take a different but equally powerful immune suppressing drug for the Crohn's, and then either not be treated for the MS at all, or risk taking inteferon in combination with the Crohn's drug (which would probably carry a lot greater risk of PML and the like than taking Tysabri alone).
Read all documentation that there is. You will find that one of the problems with Tysabri when it was first introduced, was with a patient that had Crohn's.
I'm not trying to scare you, I just want you to be safe.
I appreciate your concern... I am actually pretty knowledgeable about this, and I am consulting with multiple specialists. My gastroenterologist and neurologist are in close collaboration.
Crohn's does not "disrupt" the immune system... Crohn's IS a disruption of the immune system, just like multiple sclerosis. In both diseases, the immune system incorrectly attacks healthy body tissue. Tysabri is an excellent medication for Crohn's and is approved for Crohn's in Europe, and is on the verge of approval here in the USA as well. Tysabri is also an excellent medication for multiple sclerosis. It directly impairs the ability of the immune system to target specific tissues, and so it works for MS and Crohn's in the same way.
The problem you refer to was a patient with Crohn's, who had been taking a strong immune suppressant for six years previously, and had a very compromised immune system. He was taking Tysabri for his Crohn's (he didn't have MS). This patient is one of the three people (out of close to 20,000) who have contracted PML. The other two people were taking Avonex and Tysabri concurrently, so presumably they had MS. Thousands of patients have been given Tysabri as primary treatment for their Crohn's with no problems.
So, I believe your warnings, although well-intentioned, are misguided. Having Crohn's and MS both is certainly a bummer, but there is no reason to think that my prognosis with respect to the MS is any worse off because of the Crohn's. And there is no reason to think that my risk of PML from Tysabri is any higher than if I did not have Crohn's. And by the way, from the statistical evidence we have so far, that risk is probably less than 1 in 10,000.
I see Tysabri as a godsend... I have two serious conditions, both of which need to be treated with strong medications. And Tysabri works for both! If I could not take Tysabri, I would have to take a different but equally powerful immune suppressing drug for the Crohn's, and then either not be treated for the MS at all, or risk taking inteferon in combination with the Crohn's drug (which would probably carry a lot greater risk of PML and the like than taking Tysabri alone).
msladyinca
06-15-2007, 12:22 AM
Had My 9th Tysabri Infusion
I returned home late yesterday from my 9th Tysabri infusion...and it went pretty well all things considered. I had a slight headache after the long commute to and from the infusion center and the rush hour traffic (nothing that a couple of Ibuprofen and good night sleep didn't cure), but overall I'm feeling pretty strong.
My infusion nurse advised me that they are currently infusing approximately 15 patients with Tysabri (this is only one of many Certified infusion centers within this large HMO both in No. and So. Calif) and they are enrolling more MS patients weekly...their youngest being 23 years old with Progressive Relapsing MS.
He then advise me that he heard Tysabri is going to be used in Crohn's patients pretty soon also, or so he read on the Internet. I asked him if he knew how Tysabri works in Crohn's disease and he said no not really. So I gave him a quick and brief lesson in Tysabri and CD, and I advised him that Elan holds the sBLA for Tysabri in CD, not Biogen...and that Elan's scientists discovered Tysabri, not Biogen's.
He then asked me if I ever heard of the National Multiple Sclerosis Society? (Sheeeesh) I said yes I'd heard of them and then I asked him, "guess what the National Multiple Sclerosis Society and Biogen did for MS patients in helping us get the drug back?" He said "what?"
I said "they did absolutely nothing...it was Elan's small retail investors that helped a lot of us MS patients get to Washington, DC to testify before the FDA Advisory Committee back in March 2006 in our effort to bring Tysabri back to patients that want and need it." (my testimony was presented and played via videotape due to an exacerbation I suffered in Feb. 2006, arranged for and paid for by a number of Elan retail investors out of their own personal pockets.)
So after I finished my infusion and my one hour observation time, I obtained my next infusion date (28 days away...yaaay!).
I would like to thank each person that left me a comment on my Bl** and here, offering their condolences and sympathies for the loss of my Mina. You will never know how much they meant to me at that very sad time in my life...my mind and my heart still keep thinking she'll come to me if I call her name (like she always did...sigh)...oh well........, I'm trying to stay positive - life goes on I suppose,
(((hugs)))
Love, Lauren
I returned home late yesterday from my 9th Tysabri infusion...and it went pretty well all things considered. I had a slight headache after the long commute to and from the infusion center and the rush hour traffic (nothing that a couple of Ibuprofen and good night sleep didn't cure), but overall I'm feeling pretty strong.
My infusion nurse advised me that they are currently infusing approximately 15 patients with Tysabri (this is only one of many Certified infusion centers within this large HMO both in No. and So. Calif) and they are enrolling more MS patients weekly...their youngest being 23 years old with Progressive Relapsing MS.
He then advise me that he heard Tysabri is going to be used in Crohn's patients pretty soon also, or so he read on the Internet. I asked him if he knew how Tysabri works in Crohn's disease and he said no not really. So I gave him a quick and brief lesson in Tysabri and CD, and I advised him that Elan holds the sBLA for Tysabri in CD, not Biogen...and that Elan's scientists discovered Tysabri, not Biogen's.
He then asked me if I ever heard of the National Multiple Sclerosis Society? (Sheeeesh) I said yes I'd heard of them and then I asked him, "guess what the National Multiple Sclerosis Society and Biogen did for MS patients in helping us get the drug back?" He said "what?"
I said "they did absolutely nothing...it was Elan's small retail investors that helped a lot of us MS patients get to Washington, DC to testify before the FDA Advisory Committee back in March 2006 in our effort to bring Tysabri back to patients that want and need it." (my testimony was presented and played via videotape due to an exacerbation I suffered in Feb. 2006, arranged for and paid for by a number of Elan retail investors out of their own personal pockets.)
So after I finished my infusion and my one hour observation time, I obtained my next infusion date (28 days away...yaaay!).
I would like to thank each person that left me a comment on my Bl** and here, offering their condolences and sympathies for the loss of my Mina. You will never know how much they meant to me at that very sad time in my life...my mind and my heart still keep thinking she'll come to me if I call her name (like she always did...sigh)...oh well........, I'm trying to stay positive - life goes on I suppose,
(((hugs)))
Love, Lauren
MSNik
06-15-2007, 09:14 AM
Hi Laren,
Just wanted you to know Ive been thinking about you. Ever since last month, when my doctor mentioned how many people he has put on Tysabri lately, youve been on my mind.
You have been a serious wealth of information on this drug, and on this board. You are the person I would come to, if I needed to talk about the risks/ benefits and side effects of Tysabri. I just wanted you to know that. It is possible, after my next MRI in August that I will be considering this drug. There is a TOUCH certified center at my local hosptial, where apparently, things are going well for many patients.
I wanted to send you my regards for your loss. I cant imagine what that is like, although it might be happening sooner than I would like to admit. My kitty is not in good shape, and we have been battling her illness the past few months. My heart goes out to you.
Just wanted to send hugs and good thoughts,
nikki
Just wanted you to know Ive been thinking about you. Ever since last month, when my doctor mentioned how many people he has put on Tysabri lately, youve been on my mind.
You have been a serious wealth of information on this drug, and on this board. You are the person I would come to, if I needed to talk about the risks/ benefits and side effects of Tysabri. I just wanted you to know that. It is possible, after my next MRI in August that I will be considering this drug. There is a TOUCH certified center at my local hosptial, where apparently, things are going well for many patients.
I wanted to send you my regards for your loss. I cant imagine what that is like, although it might be happening sooner than I would like to admit. My kitty is not in good shape, and we have been battling her illness the past few months. My heart goes out to you.
Just wanted to send hugs and good thoughts,
nikki
Natatude
06-18-2007, 09:01 AM
question to Lauren and Nikki,,,, I thought the Tysabri was done every 28 days,, I am confused now LOL I just now re-read my appt card for next time, I had my first infusion on Wed June 13th,, and my next one isn't until Wednesday July 25th. That's 42 days,, should I call back to the neuros office and check about that? or is that how urs are??
MSNik
06-18-2007, 01:07 PM
Nat,
Lauren is going to have to answer that. I cant, Im sorry. Im not currently on Tysabri, but thinking about switching this fall.....Lauren has LOTS of experience with this, Im sure she can give you a straight answer. Or in the meantime, you could call the manufacturer and ask them. Maybe the first month, they space it out more? Kind of like titrating an Interferon? Just a guess. I would call them, and wait for Lauren to get back to you on this. Wish I could help you. But, IM still really proud of you for going through this! Please know youre in my thoughts and please keep us posted with progress!
Nikki
Lauren is going to have to answer that. I cant, Im sorry. Im not currently on Tysabri, but thinking about switching this fall.....Lauren has LOTS of experience with this, Im sure she can give you a straight answer. Or in the meantime, you could call the manufacturer and ask them. Maybe the first month, they space it out more? Kind of like titrating an Interferon? Just a guess. I would call them, and wait for Lauren to get back to you on this. Wish I could help you. But, IM still really proud of you for going through this! Please know youre in my thoughts and please keep us posted with progress!
Nikki
msladyinca
06-19-2007, 05:43 PM
Hi Nikki and Nat,
((((((Nikki)))))) thanks so much for your comments... it has been SOO hard dealing with the loss of Mina :(
When I had to put her to sleep, I couldn't stop crying for days... and I cried myself right into a relapse. The good news is (if there is any) the relapse was fairly mild thanks to being on Tysabri, and I recovered completely from same prior to my following infusion on the 13th. I hope that your MRI/neuro appointment in August goes well and hopefully, if your neuro does decide to switch you from Rebif, that he discusses Tysabri fully with you. Apparently, you are becoming more and more comfortable discussing Tysabri with him, and that makes me happy, because I don't want you to have any more unnecessary relapses if at all possible. Please keep me posted, okay?
Nat - your Tysabri infusions should be administered every 28 days (see the Tysabri Label which you can view on the Biogen or Tysabri sites). You should also immediately contact your neurologist and discuss this with him, as your infusions should not be dictated by the infusion center...and your infusion should not be put off to July 25...:mad:!!!
FYI, 28 days from June 13 is July 11th!
Sorry for the late response you two, but for some reason, my instant e-mail notification isn't working and I did not know there were further replies to this thread... (sigh). Hopefully, they'll be working again soon.
Let me know the outcome Nat, okay?
((((((((((( hugs to both of you ))))))))))))
Lauren
((((((Nikki)))))) thanks so much for your comments... it has been SOO hard dealing with the loss of Mina :(
When I had to put her to sleep, I couldn't stop crying for days... and I cried myself right into a relapse. The good news is (if there is any) the relapse was fairly mild thanks to being on Tysabri, and I recovered completely from same prior to my following infusion on the 13th. I hope that your MRI/neuro appointment in August goes well and hopefully, if your neuro does decide to switch you from Rebif, that he discusses Tysabri fully with you. Apparently, you are becoming more and more comfortable discussing Tysabri with him, and that makes me happy, because I don't want you to have any more unnecessary relapses if at all possible. Please keep me posted, okay?
Nat - your Tysabri infusions should be administered every 28 days (see the Tysabri Label which you can view on the Biogen or Tysabri sites). You should also immediately contact your neurologist and discuss this with him, as your infusions should not be dictated by the infusion center...and your infusion should not be put off to July 25...:mad:!!!
FYI, 28 days from June 13 is July 11th!
Sorry for the late response you two, but for some reason, my instant e-mail notification isn't working and I did not know there were further replies to this thread... (sigh). Hopefully, they'll be working again soon.
Let me know the outcome Nat, okay?
((((((((((( hugs to both of you ))))))))))))
Lauren
MSNik
06-19-2007, 07:48 PM
Lauren,
Youre on my mind quite a bit! When and if I do go the tysabri route, you will be the one I come to to talk me through some of this. I have found your posts to be extremely objective, fair and informative. Thank you and please keep on writing!
I do feel terrible listening to you talk about your pet....my heart breaks for you. I dread the day myself....pets are such an extension of ourselves, and they really are there with undying devotion when we need them. Do you have any other animals, or do you plan to get another? Im not sure I can go through this again, honestly...
ANyway, just wanted to say that youre on my mind, and I wish you nothing but good days ahead.
Hugs,
Nikki
Youre on my mind quite a bit! When and if I do go the tysabri route, you will be the one I come to to talk me through some of this. I have found your posts to be extremely objective, fair and informative. Thank you and please keep on writing!
I do feel terrible listening to you talk about your pet....my heart breaks for you. I dread the day myself....pets are such an extension of ourselves, and they really are there with undying devotion when we need them. Do you have any other animals, or do you plan to get another? Im not sure I can go through this again, honestly...
ANyway, just wanted to say that youre on my mind, and I wish you nothing but good days ahead.
Hugs,
Nikki
msladyinca
06-19-2007, 09:55 PM
Hi there Nikki,
I'll be happy to answer any questions you might have about Tysabri after you meet with your neuro, but he sure to pick his brain about Tysabri when you do see him!
You know, I don't have any other pets, which is why Mina was so important to me... perhaps I'll get another kitty in the future, but not right now. The pain is still too fresh in my heart.
You are in my thoughts too girlfriend.
Sending many many hugs your way,
Lauren
I'll be happy to answer any questions you might have about Tysabri after you meet with your neuro, but he sure to pick his brain about Tysabri when you do see him!
You know, I don't have any other pets, which is why Mina was so important to me... perhaps I'll get another kitty in the future, but not right now. The pain is still too fresh in my heart.
You are in my thoughts too girlfriend.
Sending many many hugs your way,
Lauren
MSNik
06-20-2007, 07:49 AM
Thanks Lauren. IM scared of Tysabri right now, but Im even more scared of seeing active legions on my MRI, so my Fall MRi of both spinal and brain BOTH with and without contrast will be telling. SInce the Neuro is already switching patients to Tysabri, its not going to be tough to get him to look into it for me, however IM not real clear on the side effects. I think I know the risk to benefit ratio, and I think its worth it. I just need to be sure that I really am in a risk vs. benefit place, and that the Rebif has done all it can for me.
The local hospital just became a certified touch center, one of these days, Ill wander over there and look for info, pamphlets, or someone to sit down and talk to who is either on -or administering the med. I have this need to really reach out and touch this one. I cant quite get my head around it more than from your posts....and as informative as they are- Im stil ovewhelmed. Plus, too, Im on steroids this week..achtar gel shots. I think they are making me alittle bit whiney and not quite feeling strong emotionally, which means when I get like this, I should do nothing but stay as status quo as possible. Too much info gets me overwhelmed real easy this week!
Will be in touch as the need unfolds....and, I can truly understand your theory on no pets for awhile. You cant replace on- you can subsitutute them, but its never the same. I think if I were going to do anything, Id get a small caged animal, something like a hamster. I can go away and leave it alone for a few days, and yet take it out and hold it for warmth ....the flip side is you know going in, your loooking at a 2 year shelf life! Silly, huh? My cat has been with me for 16 years right now. Im terrified of what is next.
Big hugs coming your way.:wave:
Nikki
The local hospital just became a certified touch center, one of these days, Ill wander over there and look for info, pamphlets, or someone to sit down and talk to who is either on -or administering the med. I have this need to really reach out and touch this one. I cant quite get my head around it more than from your posts....and as informative as they are- Im stil ovewhelmed. Plus, too, Im on steroids this week..achtar gel shots. I think they are making me alittle bit whiney and not quite feeling strong emotionally, which means when I get like this, I should do nothing but stay as status quo as possible. Too much info gets me overwhelmed real easy this week!
Will be in touch as the need unfolds....and, I can truly understand your theory on no pets for awhile. You cant replace on- you can subsitutute them, but its never the same. I think if I were going to do anything, Id get a small caged animal, something like a hamster. I can go away and leave it alone for a few days, and yet take it out and hold it for warmth ....the flip side is you know going in, your loooking at a 2 year shelf life! Silly, huh? My cat has been with me for 16 years right now. Im terrified of what is next.
Big hugs coming your way.:wave:
Nikki
Natatude
06-20-2007, 08:18 AM
Ok thanks Lauren,, I tried calling the office yesterday before work and the damn phone was busy so something musta been wrong since they have an automated system,, I will try again this morning! and I will let u know what they say!
msladyinca
06-20-2007, 02:58 PM
Hi Nikki and Nat...
Nikki, you said: IM scared of Tysabri right now...The local hospital just became a certified touch center, one of these days, Ill wander over there and look for info, pamphlets, or someone to sit down and talk to who is either on -or administering the med. I have this need to really reach out and touch this one
Totally understandable and I am not trying to push the issue...I'm just trying to alleviate your fears (but maybe only your neurologist can do that). Speaking to others that are on Tysabri is a really good idea...I added you to my Buddy List Nikki, so if you ever need to talk about Tysabri, feel free to instant message me. Just know that I'm here for you, okay?
Nat, good for you.... keep on 'em girl!
((((((((( Hugs to both of you ))))))))
Lauren :wave:
Nikki, you said: IM scared of Tysabri right now...The local hospital just became a certified touch center, one of these days, Ill wander over there and look for info, pamphlets, or someone to sit down and talk to who is either on -or administering the med. I have this need to really reach out and touch this one
Totally understandable and I am not trying to push the issue...I'm just trying to alleviate your fears (but maybe only your neurologist can do that). Speaking to others that are on Tysabri is a really good idea...I added you to my Buddy List Nikki, so if you ever need to talk about Tysabri, feel free to instant message me. Just know that I'm here for you, okay?
Nat, good for you.... keep on 'em girl!
((((((((( Hugs to both of you ))))))))
Lauren :wave:
jb10561
06-20-2007, 04:57 PM
Hi Nikki & Lauren,
Hope you don't if I jump in here. I've been chatting with Nikki gor a little while here. Lauren, I'm so glad to meet you. I've been reading all your posts about Tysabri for a while now. I'm pretty sure I'll be heading that way as the Rebif, which I've been on for 4 years does not seem to be helping anymore. Right now I've been going through a really rough time. Just trying get my flare to settle down. I've done IVSM on 5/5, then a month later the Acthar, which was dreadful, still having tons of symptoms, back on a tapering dose of Prednisone... Hoping this calms things down. My neuros plan is to get me off the steroids, then stop the Rebif, and start Tysabri. I am so looking forward to feeling better. Of course the Tysabri also scares me, but reading your posts are so hopeful.
Lauren, so sorry to hear about your cat, and Nikki, I thoughts are with you about yours ! I have a 7ear old dog (Casey) who is the sweetest dog. I couldn't imagine not having her!
Jenna
Hope you don't if I jump in here. I've been chatting with Nikki gor a little while here. Lauren, I'm so glad to meet you. I've been reading all your posts about Tysabri for a while now. I'm pretty sure I'll be heading that way as the Rebif, which I've been on for 4 years does not seem to be helping anymore. Right now I've been going through a really rough time. Just trying get my flare to settle down. I've done IVSM on 5/5, then a month later the Acthar, which was dreadful, still having tons of symptoms, back on a tapering dose of Prednisone... Hoping this calms things down. My neuros plan is to get me off the steroids, then stop the Rebif, and start Tysabri. I am so looking forward to feeling better. Of course the Tysabri also scares me, but reading your posts are so hopeful.
Lauren, so sorry to hear about your cat, and Nikki, I thoughts are with you about yours ! I have a 7ear old dog (Casey) who is the sweetest dog. I couldn't imagine not having her!
Jenna
Natatude
06-20-2007, 06:48 PM
Ok Lauren I got ahold of them this morning,,, they say it can not be infused before 28 days and 42 days is just fine, and may be because of vacations since the nurse and the DR both have to be there, I understand Drs and nurses need vacations but shouldn't they revole it around ppl like us on Tysabri who should have it every 28 days,, all of us in my neuros office that get it, get it done on the same day,, so they should have done us the 11th and took their vacations the following week, IMO. I am just starting this and irriated by it, I can't imagine the ones who have been on it for 5 months or a yr. and having to wait 42 days.
msladyinca
06-21-2007, 01:17 AM
Nat, they say...42 days is just fine
EXCUSE ME??? ARE THEY DOCTORS?? ARE THEY MS PATIENTS?? ARE THEY ON A SPECIFIC MEDICATION REGIME?? DO THEY REALIZE THEY ARE NOT FOLLOWING THE DOSING INSTRUCTIONS ON TYSABRI'S LABEL?? DO THEY REALIZE THEY HAVE ALMOST DOUBLED YOUR WAIT TIME FOR YOUR NEXT INFUSION?? DO THEY HAVE YOUR MEDICAL HISTORY (I.E., IF YOU HAVE AN AGGRESSIVE FORM OF MS, DO THEY REALIZE THEY ARE PUTTING YOU AT RISK FOR SUFFERING A RELAPSE WHILE WAITING ON THEIR SCHEDULES??) ARE THEY PRONE TO DISREGARDING YOUR DR'S ORDERS TO FIT THEIR SCHEDULES?? ARE THEY AWARE THEY ARE PUTTING YOU AT RISK FOR HYPERSENSITIVITY REACTIONS DUE TO STOPPING/DELAYING YOUR TREATMENTS????? (SEE PAGE 15 OF THE PATIENT MEDICATION GUIDE: ...Experience with other monoclonal antibodies suggests that patients who receive therapeutic antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment[s].)
Nat, I am BEYOND irritated at their assinine reasoning :mad: :mad: :mad: In my opinion, their actions are bordering on patient negligence... I would suggest that you IMMEDIATELY get a hold of your doctor tomorrow morning, ASAP (do not pass go, do not collect $200), and advised him of what is happening at the infusion center. I would not be surprised if he intercedes on your behalf (i.e. on behalf of ALL of his patients being infused there!). UGH!
Furthermore, I would suggest that you copy and print this message so that you have it handy when you speak to your neurologist.
Please keep me posted dearheart.
Hi Jenna! So sorry you had to see me lose my temper like that (LOL) ..., it's nice to meet you too! I hope you feel better soon, and thanks so much for your sympathies and condolences regarding the loss of my Mina. The heartache is getting a little bit better with time.
With life comes death, it's inevitable... only it just doesn't make it any easier to understand and handle though... oh well. I'm sure I'll get a new baby (kitty) in the future, one that won't replace her, but one that needs love and a home to call their own.
If I can help alleviate any of your fears regarding Tysabri, please don't hesitate to ask me any questions, okay?
Take care now,
(((((((((( hugs to all )))))))))
Lauren
EXCUSE ME??? ARE THEY DOCTORS?? ARE THEY MS PATIENTS?? ARE THEY ON A SPECIFIC MEDICATION REGIME?? DO THEY REALIZE THEY ARE NOT FOLLOWING THE DOSING INSTRUCTIONS ON TYSABRI'S LABEL?? DO THEY REALIZE THEY HAVE ALMOST DOUBLED YOUR WAIT TIME FOR YOUR NEXT INFUSION?? DO THEY HAVE YOUR MEDICAL HISTORY (I.E., IF YOU HAVE AN AGGRESSIVE FORM OF MS, DO THEY REALIZE THEY ARE PUTTING YOU AT RISK FOR SUFFERING A RELAPSE WHILE WAITING ON THEIR SCHEDULES??) ARE THEY PRONE TO DISREGARDING YOUR DR'S ORDERS TO FIT THEIR SCHEDULES?? ARE THEY AWARE THEY ARE PUTTING YOU AT RISK FOR HYPERSENSITIVITY REACTIONS DUE TO STOPPING/DELAYING YOUR TREATMENTS????? (SEE PAGE 15 OF THE PATIENT MEDICATION GUIDE: ...Experience with other monoclonal antibodies suggests that patients who receive therapeutic antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment[s].)
Nat, I am BEYOND irritated at their assinine reasoning :mad: :mad: :mad: In my opinion, their actions are bordering on patient negligence... I would suggest that you IMMEDIATELY get a hold of your doctor tomorrow morning, ASAP (do not pass go, do not collect $200), and advised him of what is happening at the infusion center. I would not be surprised if he intercedes on your behalf (i.e. on behalf of ALL of his patients being infused there!). UGH!
Furthermore, I would suggest that you copy and print this message so that you have it handy when you speak to your neurologist.
Please keep me posted dearheart.
Hi Jenna! So sorry you had to see me lose my temper like that (LOL) ..., it's nice to meet you too! I hope you feel better soon, and thanks so much for your sympathies and condolences regarding the loss of my Mina. The heartache is getting a little bit better with time.
With life comes death, it's inevitable... only it just doesn't make it any easier to understand and handle though... oh well. I'm sure I'll get a new baby (kitty) in the future, one that won't replace her, but one that needs love and a home to call their own.
If I can help alleviate any of your fears regarding Tysabri, please don't hesitate to ask me any questions, okay?
Take care now,
(((((((((( hugs to all )))))))))
Lauren
Natatude
06-21-2007, 09:06 AM
Wanna get more upset Lauren???? LOL My infusion center is at my neuros office! Thats why we can not get it till the 25th,, he will be on vacation the week of the 11th is my understanding when I called yesterday and the nurse that gives it to me is on vacation the week after that,, as to why we all have to wait for the 25th. I will however speak my mind publicly next Tuesday, because there is a Tysabri Seminar that I am going to, and my Dr and Nurse are the speakers, so any info u can give me here I will print it out and read it to them. where did u get a medical patient guide????? I got something in the mail but it only maybe 6 pages,,, But I will get it back out and see if thats what it is.
Natatude
06-21-2007, 09:30 AM
ok I got my booklets back out the Oatient Medical Guide that Tysabri sent me is only 11 pages long,, and The other one is the Touch Prescibing program booklet that is 19 pages long.
Natatude
06-21-2007, 09:30 PM
Thanks for the info and I did call the 800 number on the medical guideline booklet I had,, and they asap wanted to schedule me to be seen by someone else, I told him I was gonna mention it at the seminar and he told me if I was not happy with the answers they gave to call him back immediately.
msladyinca
06-21-2007, 10:04 PM
I agree with NarLyB, and good for you Nat for following up with MSActiveSource....,
I can hardly wait for you to bring this up at the seminar next week. Please let us know what he says (and what his nurse says as well), and then let me (us) know what you decide to do.
Was the guy at MSActiveSource surprised at these developments? Outraged? Dumbfounded? LOL LOL LOL (I bet it felt good armed with info at your fingertips, eh?)
Do tell, do tell, do tell, do tell!
Lauren ;)
I can hardly wait for you to bring this up at the seminar next week. Please let us know what he says (and what his nurse says as well), and then let me (us) know what you decide to do.
Was the guy at MSActiveSource surprised at these developments? Outraged? Dumbfounded? LOL LOL LOL (I bet it felt good armed with info at your fingertips, eh?)
Do tell, do tell, do tell, do tell!
Lauren ;)
Natatude
06-30-2007, 09:50 AM
Ok Lauren Sorry it took me so long to reply here, But someone at work quit so it was up to me and the other cook to cover it, until a new one was trained which is going great! LOL
We went to the seminar the other night and I did bring it up,, my neuro looked like he needed to go wipe! The nurse had a look like oh crap! and looked at the euro and he wasn;t saying much just really wanted to crawl under a rock somewhere! The nurse then said he is going on vacation,, and I said well shouldn't I come first????? Then I made a joke of it, and said well how about u just take me and Christine with u on vacation so I can have my med! aand everyone laughed, and she said yeah I could sure use a trip to the Bahamas! He then said that the med is good in our system for up to 6 to 8 months,, so being 2 weeks late will not effect anything with my system,, but that confuses me after I read what ppl say here,, that about 3 weeks u can start feeling it kinda wearing off. I had my first one on the 13th, and I haven't noticed any difference about anything, but the nurse and the one lady who was in there said that it would probably be my 3rd one that I notice anything. We all asked alot of questions at the seminar and it was good,, MS Active source was there and someone from Biogen so they heard my question,, the guy I talked to at MS Active source on the phone last week was really upset that my dr would go off on vacation and he told me I could call him back, and have it set up somewhere else to be done, but I think I will just go ahead and wait until the 25th for my next one, due to my husbands company at work switching insurances and I don;t want to have to switch crap around again. Cause they just yesterday approved the Tysabri and will pay for it! Thank God! and I love the nurse, I even love my neuro but I have to throw in a Natatude from time to time. This MS has messed with my life so much I will be damned if I will sit back and let drs do it too without some answers!
Another thing was the beautician I had in my teens yrs, and part of my young 20's was there with her daughter who has MS, It was so nice to see her again, but I was sorry it had to be under those circumstances, I did write down this website for her, and my nickname and urs, and told her to look for this topic to get some info cause she is new to Tysabri as well! So I hope she comes soon!
I did get a bad cold way earlier this week, so I called my neuro, who didn't return my call the day I called him, so I called my pharmacist, she looked it up and told me I could take Mucinex DM so I did and it helped alot, His secretary called me the next day and told me to call my family DR , I also brought that up at the seminar, He probably wished I would shut the hell up and go home! LOL But I wanted answers, He kept looking at his watch and when it was over he was gone like a flash. That was kinda irritating, But he was the one doing this and he shoulda had time to do it and not have other things to fly off and do and get irritable if it was taking longer, if he had an emergency happen then I would have completely understood, but he shoulda said do IMO.
We went to the seminar the other night and I did bring it up,, my neuro looked like he needed to go wipe! The nurse had a look like oh crap! and looked at the euro and he wasn;t saying much just really wanted to crawl under a rock somewhere! The nurse then said he is going on vacation,, and I said well shouldn't I come first????? Then I made a joke of it, and said well how about u just take me and Christine with u on vacation so I can have my med! aand everyone laughed, and she said yeah I could sure use a trip to the Bahamas! He then said that the med is good in our system for up to 6 to 8 months,, so being 2 weeks late will not effect anything with my system,, but that confuses me after I read what ppl say here,, that about 3 weeks u can start feeling it kinda wearing off. I had my first one on the 13th, and I haven't noticed any difference about anything, but the nurse and the one lady who was in there said that it would probably be my 3rd one that I notice anything. We all asked alot of questions at the seminar and it was good,, MS Active source was there and someone from Biogen so they heard my question,, the guy I talked to at MS Active source on the phone last week was really upset that my dr would go off on vacation and he told me I could call him back, and have it set up somewhere else to be done, but I think I will just go ahead and wait until the 25th for my next one, due to my husbands company at work switching insurances and I don;t want to have to switch crap around again. Cause they just yesterday approved the Tysabri and will pay for it! Thank God! and I love the nurse, I even love my neuro but I have to throw in a Natatude from time to time. This MS has messed with my life so much I will be damned if I will sit back and let drs do it too without some answers!
Another thing was the beautician I had in my teens yrs, and part of my young 20's was there with her daughter who has MS, It was so nice to see her again, but I was sorry it had to be under those circumstances, I did write down this website for her, and my nickname and urs, and told her to look for this topic to get some info cause she is new to Tysabri as well! So I hope she comes soon!
I did get a bad cold way earlier this week, so I called my neuro, who didn't return my call the day I called him, so I called my pharmacist, she looked it up and told me I could take Mucinex DM so I did and it helped alot, His secretary called me the next day and told me to call my family DR , I also brought that up at the seminar, He probably wished I would shut the hell up and go home! LOL But I wanted answers, He kept looking at his watch and when it was over he was gone like a flash. That was kinda irritating, But he was the one doing this and he shoulda had time to do it and not have other things to fly off and do and get irritable if it was taking longer, if he had an emergency happen then I would have completely understood, but he shoulda said do IMO.
jb10561
06-30-2007, 10:52 AM
Wow, Nat ! I love your attitude ! That must have been an incredible experience. I will probably be going on Tysabri in the fall. I'm tapering down on Prednisone now. Hopefully, my immune system will be back to semi-normal soon. You and Lauren both have been a wealth of information.
Jenna
Jenna
msladyinca
06-30-2007, 07:34 PM
OMG Nat...LOL - to be a fly on the wall in the seminar would have been hysterical!!! (I could've buzzed you with more questions too!)
We went to the seminar the other night and I did bring it up,, my neuro looked like he needed to go wipe! The nurse had a look like oh crap! and looked at the euro and he wasn;t saying much just really wanted to crawl under a rock somewhere!
I'll bet - Serves them right!!!
My thought is that he mentioned Tysabri stays in the system for up to 6 to 8 months,, so being 2 weeks late will not effect anything with my system If this were true, why then must Tysabri be administered every 28 days? Helllllllooooo???
I sure hope this never happens to his patients again (although I have a sneaking suspicion that it won't - LOL!).
MS Active source was there and someone from Biogen so they heard my question Why do I get the feeling that the doctor and his nurse had a nice little conversation after the seminar was over? Ha ha...
Cause they just yesterday approved the Tysabri and will pay for it! Wooooooohoooooooooooo!
I did write down this website for her, and my nickname and urs, and told her to look for this topic to get some info cause she is new to Tysabri as well! So I hope she comes soon! I hope she comes here too, but at least she went to the Tysabri seminar (were you raised some really good issues ;) ), so hopefully she learned quite a bit about Tysabri.
Feel like your own patient advocate now Nat???? Well you should! You go girl! :)
Hi Jenna! I sure hope you are able to obtain great results from Tysabri as soon as you start it..., is this a good day or what?
Have a wonderful weekend you two.
((((((((( hugs )))))))))
Lauren :wave:
We went to the seminar the other night and I did bring it up,, my neuro looked like he needed to go wipe! The nurse had a look like oh crap! and looked at the euro and he wasn;t saying much just really wanted to crawl under a rock somewhere!
I'll bet - Serves them right!!!
My thought is that he mentioned Tysabri stays in the system for up to 6 to 8 months,, so being 2 weeks late will not effect anything with my system If this were true, why then must Tysabri be administered every 28 days? Helllllllooooo???
I sure hope this never happens to his patients again (although I have a sneaking suspicion that it won't - LOL!).
MS Active source was there and someone from Biogen so they heard my question Why do I get the feeling that the doctor and his nurse had a nice little conversation after the seminar was over? Ha ha...
Cause they just yesterday approved the Tysabri and will pay for it! Wooooooohoooooooooooo!
I did write down this website for her, and my nickname and urs, and told her to look for this topic to get some info cause she is new to Tysabri as well! So I hope she comes soon! I hope she comes here too, but at least she went to the Tysabri seminar (were you raised some really good issues ;) ), so hopefully she learned quite a bit about Tysabri.
Feel like your own patient advocate now Nat???? Well you should! You go girl! :)
Hi Jenna! I sure hope you are able to obtain great results from Tysabri as soon as you start it..., is this a good day or what?
Have a wonderful weekend you two.
((((((((( hugs )))))))))
Lauren :wave:
michelle07
07-02-2007, 11:11 PM
After reading much of this board, I 'm rerady to take the leap starting yesterday!!:blob_fire :blob_fire Does anyone know the approximate wait after telling the doctor that I want it NOW. Do you think that calling the TOUCH program would help? I wish there were an icon for shaking in your shoes. I'm a little terrified, but excited, too. Ive neard some great stories, but Lauren's pushed me over the edge! Tysabri patients, send your positive stories! You will make a difference and encourage so many of us who read the board but never post.
Michelle:)
Michelle:)
msladyinca
07-12-2007, 12:44 AM
I just got home (around 5:30 pm) from my 10th Tysabri infusion...,
Yeeeeeeehaaaaaaaaw and Wooooooohoooooooooo!
WOW...STILL no side effects, YaaaaaY! Usually I feel a little tired after my infusion but I don't think it's the infusion itself... it's usually the long drive (53 miles one way in rush-hour traffic) that wears me out and I feel the need to take a nap afterwards... this time though, WOWZERS... I'm SOOOO ready to go...(whistling "Take Me Out To The Ballgame" - heehee).
The hope that I feel before and after each infusion is absolutely incredible... I wish each of you could feel what I'm feeling right now. If any of you who know me thought I was positive before - WELLLLLLL......LOOK OUT WORLD, HERE I COME!
Gosh I can hardly wait until tomorrow, to see what the new day brings...and considering the weather out here has been in the triple digits all last week (which left me feeling like a wet noodle), for me to anticipate a new day with this triple digit heatwave we're in... that's really saying something! And my Tysabri vial, has a new lot # and new expiration date...whoa!
Oh, and I even got my appetite back...Chinese food tonight - chicken chow mein, fried rice, eggrolls with a sweet and sour sauce, fortune cookies, and for dessert - Black Forest chocolate ice cream with brownie bits and cherries mixed in - YUM! (good Lord, I sound like I'm on steroids, LOL!)
Okay, Ray (my caregiver) is yelling "Dinner is ready"..., so I've got to go..., Have a great evening everybody! Take care,
(((hugs)))
Love, Lauren :wave:
Yeeeeeeehaaaaaaaaw and Wooooooohoooooooooo!
WOW...STILL no side effects, YaaaaaY! Usually I feel a little tired after my infusion but I don't think it's the infusion itself... it's usually the long drive (53 miles one way in rush-hour traffic) that wears me out and I feel the need to take a nap afterwards... this time though, WOWZERS... I'm SOOOO ready to go...(whistling "Take Me Out To The Ballgame" - heehee).
The hope that I feel before and after each infusion is absolutely incredible... I wish each of you could feel what I'm feeling right now. If any of you who know me thought I was positive before - WELLLLLLL......LOOK OUT WORLD, HERE I COME!
Gosh I can hardly wait until tomorrow, to see what the new day brings...and considering the weather out here has been in the triple digits all last week (which left me feeling like a wet noodle), for me to anticipate a new day with this triple digit heatwave we're in... that's really saying something! And my Tysabri vial, has a new lot # and new expiration date...whoa!
Oh, and I even got my appetite back...Chinese food tonight - chicken chow mein, fried rice, eggrolls with a sweet and sour sauce, fortune cookies, and for dessert - Black Forest chocolate ice cream with brownie bits and cherries mixed in - YUM! (good Lord, I sound like I'm on steroids, LOL!)
Okay, Ray (my caregiver) is yelling "Dinner is ready"..., so I've got to go..., Have a great evening everybody! Take care,
(((hugs)))
Love, Lauren :wave:
Natatude
07-12-2007, 11:43 PM
That's great Lauren I can't wait till mine starts making me feel great! Today was a bad day I was in alot of pain today,, usually I am great at hiding it but today it was not hidable!
Loge
07-16-2007, 11:44 PM
I owe an update to this thread! When last I posted, I had just been (re)-approved for Tysabri. I had previously had two infusions of Tysabri, but then moved a long distance, with consequent drama. Anyway, I have Crohn's as well as MS, so I'm very happy to be on it.
I did have a Tysabri infusion a little over three weeks ago. This was my third, coming three months after the first two. As before, I felt no ill side-effects. I didn't feel the mild euphoria that I felt with my first two, but I felt markedly energized for the first three weeks.
Now, at just over three weeks, I can really feel a reduction in energy. I felt this after my first two, as well... three weeks after the infusion, it feels like something is "wearing off". I know that it's not that simple, but it's descriptive. It's not bad; it's just not great, like it has been!
And I have another infusion at the end of this week.
L
I did have a Tysabri infusion a little over three weeks ago. This was my third, coming three months after the first two. As before, I felt no ill side-effects. I didn't feel the mild euphoria that I felt with my first two, but I felt markedly energized for the first three weeks.
Now, at just over three weeks, I can really feel a reduction in energy. I felt this after my first two, as well... three weeks after the infusion, it feels like something is "wearing off". I know that it's not that simple, but it's descriptive. It's not bad; it's just not great, like it has been!
And I have another infusion at the end of this week.
L
purplegolfer
07-18-2007, 05:19 PM
Been away from this board for a while and just read this whole thread...omg you gals are AWESOME!! I've had 4 Tysabri infusions and am getting ready to tell my husband that I can go by myself since I have had no reactions. Have even gone into work right after one and had no problems. I have very few symptoms from MS (am DX'd with spinal and MRI) but will say I haven't developed any new symptoms so something is working. I have my 6 month follow up with Neuro in August and am looking forward to seeing the MRI's! I was the first patient in our area and now the infusion center is up to 5 patients with more coming and I have a feeling from my Neuro. Love the comments on the scheduling patients vs. vacations...haven't had that problem yet but do face a scheduling nightmare with my work, husband's work and infusion center. Haven't been able to stick to every 28 days- the most I've gone is 31 so I figure that's a minor accomplishment.
I have found that the info on this thread is amazing and have forwarded it to concerned parental units so they may ease their minds. THANK YOU THANK YOU!!
On those with golden years pets- have the same issue with my two dogs. Both are 14 and going downhill steadally. The only thing I can say is I am hoping I will know when they are not having good quality of life. I figure that will be my last gift for them. I will then wait for the stray that needs a loving home...
Thoughts to everyone out there...Jen
I have found that the info on this thread is amazing and have forwarded it to concerned parental units so they may ease their minds. THANK YOU THANK YOU!!
On those with golden years pets- have the same issue with my two dogs. Both are 14 and going downhill steadally. The only thing I can say is I am hoping I will know when they are not having good quality of life. I figure that will be my last gift for them. I will then wait for the stray that needs a loving home...
Thoughts to everyone out there...Jen
moore170
07-19-2007, 05:32 PM
Thank you so much for the information. This is my first time here.
I have been trying to find peoples results but was only coming across all the warnings. I have been on ACTH, Betaseron, Immuran, Avonex, Copaxone and LDNaltrexone along with IV Solumedrol both to treat exacerbations and on a monthly schedule. I am now going to try Tysabri. I was finally diagnosed in 1987 and I think my first sympton was when I had Optiical Nueritis in 1981.
I have been on copaxone for too long and was hoping to read something positive. I am of course a little nervous but the postings here are making me feel much better about my decision. I just hope the paper work doesn't take too long. I am ready to start.
Candy
I have been trying to find peoples results but was only coming across all the warnings. I have been on ACTH, Betaseron, Immuran, Avonex, Copaxone and LDNaltrexone along with IV Solumedrol both to treat exacerbations and on a monthly schedule. I am now going to try Tysabri. I was finally diagnosed in 1987 and I think my first sympton was when I had Optiical Nueritis in 1981.
I have been on copaxone for too long and was hoping to read something positive. I am of course a little nervous but the postings here are making me feel much better about my decision. I just hope the paper work doesn't take too long. I am ready to start.
Candy
msladyinca
07-20-2007, 07:49 PM
Hang in there Nat and Loge....
Hopefully, soon each of you will receive relief. Loge, I have a request of you with regard to your CD..... could you add me to your Buddy list please so I can ask you there? Thank you.
Welcome back Jen, woohoo on your Tysabri progress, and good luck with your six-month progress check :)
Hi Candy, I pray that Tysabri helps you as much as it is helped all of us, and welcome to this site! Glad you found us -
(((((((((( many hugs to all )))))))))))))
Lauren :wave:
Hopefully, soon each of you will receive relief. Loge, I have a request of you with regard to your CD..... could you add me to your Buddy list please so I can ask you there? Thank you.
Welcome back Jen, woohoo on your Tysabri progress, and good luck with your six-month progress check :)
Hi Candy, I pray that Tysabri helps you as much as it is helped all of us, and welcome to this site! Glad you found us -
(((((((((( many hugs to all )))))))))))))
Lauren :wave:
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07-20-2007, 09:22 PM
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