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 - 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!
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))))))))
Last edited by msladyinca; 05-02-2007 at 03:35 PM.
Reason: Those pesky typos!
The Following 2 Users Say Thank You to msladyinca For This Useful Post: approved (04-23-2011), bridgecr (02-27-2011)
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.
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!
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 )
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!!
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,
Last edited by msladyinca; 04-23-2007 at 11:14 AM.
Reason: typos - ugh! lol
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!
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
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
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,
Last edited by msladyinca; 04-24-2007 at 04:03 PM.
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.