purplegolfer
03-04-2007, 03:03 PM
Background- diagnosed with MS by MRI and LP 8 months ago. Neurologist didn't want me on anything since Tysabri was coming back on the market and he likes the results from the studies (except those two little pesky deaths from PML). Getting first infusion in a week and looking for some real info on how I will feel after. Have very few symptoms on a daily basis and still working as a manager in a large restaurant so needless to say I really need to know how my energy level is going to be affected. Anyone have any insight?
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Barbbelle
03-04-2007, 05:51 PM
Hi! Tysabri is a very positive med. What I mean by that is it won't make you sick like alot of other MS drugs do. It takes an hour for the IV Tysabri to infuse and then 1 hour for them to monitor you with a saline drip. I am usually at the hospital for 3 hrs from start to finish. Occasionally, I ask for gingerale because of slight nausea (only twice). I feel great leaving the hospital, but I usually go home and rest. I definitely wake the next day feeling better. You shouldn't have any problems working! I hope this helps and let me know how you are doing, ok? Barb
purplegolfer
03-05-2007, 10:21 AM
Barbbelle- THANK YOU for the info. I like the "Touch Program" but they wouldn't give me any other info than what is posted on the website. Hives or a rash i can deal with but I really needed to know if I should schedule a day off after for tiredness. You have taken a load off my mind!! I'll keep you posted...
Natatude
03-14-2007, 11:17 AM
hello,,, i am just now reading this, since i wasn't phsyically or even mentally able to deal with the computer or talking about MS till now,, how did u deal with it afterwards??? my neuro wants me to start this asap, but i am scared of it, so he told me to do some research myself and let him know what i want to do when i see him again on May 1st.
candle66
03-16-2007, 08:14 AM
I thought only Tysabri was prescribed for progressive MS.
I am surprised your doctor put you on it right away. personaly, I would try other treatments first.
I am surprised your doctor put you on it right away. personaly, I would try other treatments first.
Natatude
03-16-2007, 09:56 AM
My Neuro told me i am now progressive must be why he wants to start me on it,,, i posted another thread but no one has answered it yet,, i really do need some help, i need to give him an answer by May 1st,,, can anyone help me,, please find my thread i started and take a read, Thank u.
SUSAN-K
03-16-2007, 11:15 AM
:) I Always Feel Alot Better After The Tysabri. It Is Given Every 28 Days And I Find That Around 21to 24 Days I Can Tell That It Is Time For My Infusion. I Will Start To Feel A Little More Fatigued. I Don't Think You Need To Schedule A Day Off.
Good Luck To You!
Good Luck To You!
purplegolfer
03-20-2007, 02:14 PM
Been away for awhile so responding to couple things here...
My first infusion got delayed since the clinic where I was supposed to go didn't have THEIR paperwork in order and I'm the one with holes in the brain. In respsonse to someone questioning why I was going on Tysabri directly instead of starting with the other older meds- my doc is really enthusiastic about it's results and feels that if there is a new med available and it is prooving to be better than why would you not utilize it. And since I am not a shot person why not??
Good luck "Natatude"- keep your chin up. My first 3 months after dx were the toughest.
And thank you "Susan-K"- I appreciate your info!!
My first infusion got delayed since the clinic where I was supposed to go didn't have THEIR paperwork in order and I'm the one with holes in the brain. In respsonse to someone questioning why I was going on Tysabri directly instead of starting with the other older meds- my doc is really enthusiastic about it's results and feels that if there is a new med available and it is prooving to be better than why would you not utilize it. And since I am not a shot person why not??
Good luck "Natatude"- keep your chin up. My first 3 months after dx were the toughest.
And thank you "Susan-K"- I appreciate your info!!
deesnest
03-21-2007, 01:11 PM
Hi! I am having my 4th Tysabri infusion today. I can't say enough good things about Tysabri. I have my infusion at the doctors office, I see a doctor, then have the infusion, which is just an IV drip. The word "infusion" scared me to death when I went in for my first one. I have had no bad reactions while having the infusion. If you're prone to headaches, my doctor gives me a few asprin before having the infusion. The first infusion I woke up the next day and was absolutely pain free, no dizziness, no burning, no cognitive problems. I thought it was all in my head. It only lasted one day. After the second infusion I had the same wonderful reactions for 10 days! Can you believe how it felt?!!!
10 days feeling wonderful! The arthritis had never returned, my joints feel no pain and I can actually walk without a cane. My third infusion was the same.
I can't wait for infusion number 4 today! I can tell when it starts to wear off.
I hope you "GO FOR IT" and take the Tysabri. You can read blogs of other people with the same reactions, if you surf the net.
Good Luck!
10 days feeling wonderful! The arthritis had never returned, my joints feel no pain and I can actually walk without a cane. My third infusion was the same.
I can't wait for infusion number 4 today! I can tell when it starts to wear off.
I hope you "GO FOR IT" and take the Tysabri. You can read blogs of other people with the same reactions, if you surf the net.
Good Luck!
msladyinca
03-23-2007, 03:58 PM
Hi everyone, I have had MS for 31 yrs. (I was R/R for 26 yrs), and I was re-classified in 6/2005 as SPMS with relapses after suffering a bad relapse without Tysabri's protection. I had my 6th Tysabri infusion on Wednesday since re-starting Tysabi on 10/16/06.
Prior to Tysabri - I had breakthrough disease activity when on Avonex, and then Copaxone, and I was steadily getting worse. I had only one infusion of Tysabi in early 2005 before it was voluntarily removed from the market by the mfgr. and at that time, I was still R/R...Tysabri did the following for me: After 2 weeks of my infusion, my right drop foot was gone, my limp was gone, my slurred speech was gone, my optic neuritis and balance were just starting to improve, and I put my walker away and only used a cane for support as my balance wasn't completely back yet.
Furthermore, I testified via videotape before the FDA A/C on 3/7/06 (along with other MS patients) in an effort to bring Tysabri back for all of us who want and need it.
As this is my first post here, I am not 100% sure of this site's posting guidelines, and don't want to post anything that will get me "banned" (lol) ;) , so if any of you have specific Tysabri questions you'd like to ask me, please feel free to send me an email.
I'm not a dr. and I can't/won't give anyone medical advice, but I can try to give you accurate facts re: Tysabri.
I'm not sure what some of you are so afraid of...if it's PML (Progressive Multifocal Leukoencephalopathy), there were 3 trial patients that developed PML: 2 pts. when using Tysabri in combination with Avonex (another immunomodulator), and 1 Crohn's pt that had a previous severely compromised immune system due to being on Azathoprine for 6 years. Of these 3 pts, 2 died, and neither of them had MS.
This means that out of approx. 3,000 trial pts that had a confirmed dx of MS, that did not have a compomised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 general population pts that also met the above critera (me included) from 11/04 to 2/05, that's 8,000 pts. total, not one of us developed PML and died - which is a risk factor of zero in 8,000 or 0:8,000.
So please don't be afraid of Tysabri - discuss it fully with your neurologist that is knowledgeable about Tysabri.
Each of us has our own comfort level when deciding on our MS therapy that can help us fight our disease. No matter what your choice of therapy is, I support your fully informed choice. Knowledge is Power.
All my very best to each of you...,
(((((((hugs))))))))))) :)
Prior to Tysabri - I had breakthrough disease activity when on Avonex, and then Copaxone, and I was steadily getting worse. I had only one infusion of Tysabi in early 2005 before it was voluntarily removed from the market by the mfgr. and at that time, I was still R/R...Tysabri did the following for me: After 2 weeks of my infusion, my right drop foot was gone, my limp was gone, my slurred speech was gone, my optic neuritis and balance were just starting to improve, and I put my walker away and only used a cane for support as my balance wasn't completely back yet.
Furthermore, I testified via videotape before the FDA A/C on 3/7/06 (along with other MS patients) in an effort to bring Tysabri back for all of us who want and need it.
As this is my first post here, I am not 100% sure of this site's posting guidelines, and don't want to post anything that will get me "banned" (lol) ;) , so if any of you have specific Tysabri questions you'd like to ask me, please feel free to send me an email.
I'm not a dr. and I can't/won't give anyone medical advice, but I can try to give you accurate facts re: Tysabri.
I'm not sure what some of you are so afraid of...if it's PML (Progressive Multifocal Leukoencephalopathy), there were 3 trial patients that developed PML: 2 pts. when using Tysabri in combination with Avonex (another immunomodulator), and 1 Crohn's pt that had a previous severely compromised immune system due to being on Azathoprine for 6 years. Of these 3 pts, 2 died, and neither of them had MS.
This means that out of approx. 3,000 trial pts that had a confirmed dx of MS, that did not have a compomised immune system, and received Tysabri as a monotherapy (by itself), and the approx. 5,000 general population pts that also met the above critera (me included) from 11/04 to 2/05, that's 8,000 pts. total, not one of us developed PML and died - which is a risk factor of zero in 8,000 or 0:8,000.
So please don't be afraid of Tysabri - discuss it fully with your neurologist that is knowledgeable about Tysabri.
Each of us has our own comfort level when deciding on our MS therapy that can help us fight our disease. No matter what your choice of therapy is, I support your fully informed choice. Knowledge is Power.
All my very best to each of you...,
(((((((hugs))))))))))) :)
PghGuy00
03-27-2007, 05:37 AM
Is there a time period between were if you are on one of the CRABs and want to switch to Tysabri?
msladyinca
03-27-2007, 01:53 PM
Hi Pgh-
I'm not sure if your question was directed to me, but yes - I was on both Avonex and Copaxone in 2004, and I was failing both therapies (I was having breakthrough disease activity), so I my neuro took me off Avonex first, switched me to Copaxone, took me off that, and then put me on Tysabri in early 2005.
Tysabri was like a miracle for me with just one dose in 2005 (honestly). I was absolutely heartbroken when it was voluntarily removed from the market on 3/1/05 because I no longer had Tysabri's superior efficacy of 67% to protect me from further relapses, and in June 05, I had a very bad relapse that put me in a w/c.
But, I have been back on Tysabri since Oct. 06, and since then, I haven't had a relapse or disease progression for 6 months! Wooohoo! :D
I have hope with Tysabri that I will walk again, and at the very least, I have hope again that my disease won't progress.
Take care now Pgh :wave:
Lauren
I'm not sure if your question was directed to me, but yes - I was on both Avonex and Copaxone in 2004, and I was failing both therapies (I was having breakthrough disease activity), so I my neuro took me off Avonex first, switched me to Copaxone, took me off that, and then put me on Tysabri in early 2005.
Tysabri was like a miracle for me with just one dose in 2005 (honestly). I was absolutely heartbroken when it was voluntarily removed from the market on 3/1/05 because I no longer had Tysabri's superior efficacy of 67% to protect me from further relapses, and in June 05, I had a very bad relapse that put me in a w/c.
But, I have been back on Tysabri since Oct. 06, and since then, I haven't had a relapse or disease progression for 6 months! Wooohoo! :D
I have hope with Tysabri that I will walk again, and at the very least, I have hope again that my disease won't progress.
Take care now Pgh :wave:
Lauren
purplegolfer
03-28-2007, 12:55 PM
Had my first infusion yesterday and everything went GREAT. I'm the first in my area to get it and was told by the staff that they were waiting to see how I did before they schedule the others in the area that are waiting for it. No reaction at all- no bumps, hives, feel great and in fact felt exactly the same as when I walked in. Drove my self home after my husband dropped me off at my car!!
Yes it is the PML chances that had me terrified which is not a suprise since all officail info on the drug is shadowed by the black box warnings. My doctor is very enthusiastic about this drug and I would tell anyone to not be so terrrified! Thank you to the msladyinca- it is great to hear how well you are doing on this drug and thank you for putting the good info out there so we can balance it against the drug company's FDA required warnings!!
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this dx.
Yes it is the PML chances that had me terrified which is not a suprise since all officail info on the drug is shadowed by the black box warnings. My doctor is very enthusiastic about this drug and I would tell anyone to not be so terrrified! Thank you to the msladyinca- it is great to hear how well you are doing on this drug and thank you for putting the good info out there so we can balance it against the drug company's FDA required warnings!!
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this dx.
purplegolfer
03-28-2007, 01:08 PM
Had my first infusion yesterday and everything went GREAT. I'm the first in my area to get it and was told by the staff that they were waiting to see how I did before they schedule the others in the area that are waiting for it. No reaction at all- no bumps, hives, feel great and in fact felt exactly the same as when I walked in. Drove my self home after my husband dropped me off at my car!!
Yes it is the PML chances that had me terrified which is not a suprise since all officail info on the drug is shadowed by the black box warnings. My doctor is very enthusiastic about this drug and I would tell anyone to not be so terrrified! Thank you to the msladyinca- it is great to hear how well you are doing on this drug and thank you for putting the good info out there so we can balance it against the drug company's FDA required warnings!!
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this our altered reality!!
Yes it is the PML chances that had me terrified which is not a suprise since all officail info on the drug is shadowed by the black box warnings. My doctor is very enthusiastic about this drug and I would tell anyone to not be so terrrified! Thank you to the msladyinca- it is great to hear how well you are doing on this drug and thank you for putting the good info out there so we can balance it against the drug company's FDA required warnings!!
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this our altered reality!!
msladyinca
03-28-2007, 05:13 PM
Oh how WONDERFUL for you purplegolfer! YAY!
You said:
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this our altered reality!!
Who is that and where is that post so I can go read it?
I'm sooooo happy for you dearheart :D
You said:
Check out the new posting about the violinist- as she said I think every MS patient can use this story to help thru this our altered reality!!
Who is that and where is that post so I can go read it?
I'm sooooo happy for you dearheart :D
purplegolfer
03-29-2007, 12:52 PM
msladyinca,
check out "I hope this is ok to share" and everyone else who is following this thread should to...
I hope you don't mind but printed off your response about Tysabri and gave to a friend who is newly diagnosed. You put some great info in it and I am a firm believer in sharing good news especially among us who live with MS. Still feeling great- not sure if it is relief from having no reactions or the Tysabri itself but I think I am a fan!! Hope you are doing well yourself!!
check out "I hope this is ok to share" and everyone else who is following this thread should to...
I hope you don't mind but printed off your response about Tysabri and gave to a friend who is newly diagnosed. You put some great info in it and I am a firm believer in sharing good news especially among us who live with MS. Still feeling great- not sure if it is relief from having no reactions or the Tysabri itself but I think I am a fan!! Hope you are doing well yourself!!
msladyinca
03-29-2007, 03:03 PM
Oooooh, you meant me! <-------DUH - lol ;)
Of course I don't mind that you printed off the info I provided. I'm not a dr and it wasn't medical advice, so I think I'm safe in sharing info I've researched since 2000, and lived with for 31 years as a MS patient...yikes!
Much, much love, support and continued success with Tysabri...and much love and support to your newly dx'd friend.
Lauren :)
Of course I don't mind that you printed off the info I provided. I'm not a dr and it wasn't medical advice, so I think I'm safe in sharing info I've researched since 2000, and lived with for 31 years as a MS patient...yikes!
Much, much love, support and continued success with Tysabri...and much love and support to your newly dx'd friend.
Lauren :)
aimee813
03-30-2007, 02:34 AM
hi,
I'm new here and am about to start with Tysabri after finishing a 3 day solumedrol infusion to treat a bad flareup.
I don't really have any fears about the procedure or even the risk of death; I am wanting to know if this medication could potentially help my walking. I went from a cane to a walker in a matter of months, after a period of nonstop stress, and in my worst state during this flareup, I could barely lift my legs with a walker. The treatment is helping. I want to be realistic about Tysabri's potential - it sound like some people have actually gone back from wheelchairs, canes, etc. Do tell, please. I am starving for some hope.
I'm new here and am about to start with Tysabri after finishing a 3 day solumedrol infusion to treat a bad flareup.
I don't really have any fears about the procedure or even the risk of death; I am wanting to know if this medication could potentially help my walking. I went from a cane to a walker in a matter of months, after a period of nonstop stress, and in my worst state during this flareup, I could barely lift my legs with a walker. The treatment is helping. I want to be realistic about Tysabri's potential - it sound like some people have actually gone back from wheelchairs, canes, etc. Do tell, please. I am starving for some hope.
purplegolfer
03-30-2007, 03:43 PM
I don't have enough info to reply inteligently...maybe Lauran does...hope the Tysabri does work for you. It looks like it's going to be a really positive med for us. GOOD LUCK!!!
Natatude
03-31-2007, 01:07 PM
msladyinca and purplegolfer, thanks so much for the info! i have been so scared it because of the PML,, i always end up with something that is rare it seems,, i was diagnosed postively on 9/11 2001,,, after i found out it was MS i have had it probably since i was 15 or 16, and drs said it was stress or just too much outside in the sun, cause in the summertime is when i was the worst ALWAYS! i was a majorette in school and we were outside 24 hours a day for months! i was on Avonex first for a yr, had a relapse and the side effects were awful, made me bed ridden for almost 3 days straight, switched to copaxone was on it for 18 months had another bad relapse, was given solumedrol and it helped alot, i even walked with a cane going in the hospital didn;t need it when i was released 4 days later,, he then switched me to Betaseron which i have been on since sept of 2004,, it was doing great until january, saw the neuro he ran the MRI and got me solumedrol again and wants to switch to the Tysabri,, my pharmacy called yesterday to refill my betaseron i told her about maybe switching to the Tysabri and she told me that i needed to be off the betaseron for at least 30 days before taking the Tysabri,, and she talked to me, as she also has MS, she said they have alot of patients on it and it should be ok,, and also said there was a blood test that the neuro should be giving me to make sure my system is strong enough for the Tysabri so it won;t cause the PML,, he has never mentioned that, have any of u had that blood work done to see if ur body could handle the Tysabri??? i am gonna copy paste and print all info i get to take to my neuro when i see him on May 1st,, that PML is the only thing scaring me,,, cause een tho i have MS and have had alot more worse days lately than good,, i still do not want to die,, my daughter is just gettig ready to graduate in june and already accepted to college and ready to go in august,, i wanna see her graduate from college and get married and have me some grandbabies,, thinking of all of that is what keeps me going these days,, and i sure don;t want to take some med,, that i would know in the back of my mind,, could kill me! reading all ur replies here does have me feeling wayyyyyyyyy better about taking it. Thanks so much!
msladyinca
03-31-2007, 08:56 PM
Hi Natatude and aimee...
thanks so much for your questions...first to Natatude:
have any of u had that blood work done to see if ur body could handle the Tysabri???
I have not needed bloodwork prior to starting Tysabri as my immune system is strong, however, if needed, most neuros would probably want to run regular 'blood platelet counts' to check to see if your immune system is reconstituted (strong) enough for Ty. I'm not a dr., but in my humble opinion, if a confirmed MS patient has not been on a very strong immune suppressant like Novantrone, Imuran, Cellcept, etc., you should be okay, but it is always best to discuss this with your treating physican. Plus, the TOUCH protocol is in place to prevent MS patients with a dimished (very low) immune system from receiving Tysabri. Furthermore, you should discuss with your neuro how long you should be off Betaseron before starting Ty as I do not believe it's a month. Per the guidance of the FDA, I believe they suggested 3 weeks for the interferons, and 2 weeks for Copaxone for the 'wash out period'...but you'll need to look at their website to confirm this, and again, it's always best discuss this with your neuro. Lastly dearheart, the risk of PML is only .1%...of the 8,000 confirmed MS patients (trial and gen. population pts) that received Ty as a monotherapy with non-compromised immune systems from 11/04 through 2/05-me included), none of us developed PML, and since Ty's reintroduction in 7/06, approx. 6,300 pts (as indicated above) have rec'vd Ty...NO PML cases reported! :)
To aimee: I want to be realistic about Tysabri's potential
Tysabri is used to try and slow down disease progression and prevent further relapses with accumulating disabilities...(superior efficacy of 67% ain't too shabby ;) ). However, (don't you just love those howevers? lol) there have been many anecdotal reports from patients that state some (if not all) their symptoms have improved, and there is proven data which supports this as improvements in the patient's Quality of Life (which no other MS med can claim).
I hope this info helps, and all my very best to both of you...(you too purplegolfer)...good luck!
thanks so much for your questions...first to Natatude:
have any of u had that blood work done to see if ur body could handle the Tysabri???
I have not needed bloodwork prior to starting Tysabri as my immune system is strong, however, if needed, most neuros would probably want to run regular 'blood platelet counts' to check to see if your immune system is reconstituted (strong) enough for Ty. I'm not a dr., but in my humble opinion, if a confirmed MS patient has not been on a very strong immune suppressant like Novantrone, Imuran, Cellcept, etc., you should be okay, but it is always best to discuss this with your treating physican. Plus, the TOUCH protocol is in place to prevent MS patients with a dimished (very low) immune system from receiving Tysabri. Furthermore, you should discuss with your neuro how long you should be off Betaseron before starting Ty as I do not believe it's a month. Per the guidance of the FDA, I believe they suggested 3 weeks for the interferons, and 2 weeks for Copaxone for the 'wash out period'...but you'll need to look at their website to confirm this, and again, it's always best discuss this with your neuro. Lastly dearheart, the risk of PML is only .1%...of the 8,000 confirmed MS patients (trial and gen. population pts) that received Ty as a monotherapy with non-compromised immune systems from 11/04 through 2/05-me included), none of us developed PML, and since Ty's reintroduction in 7/06, approx. 6,300 pts (as indicated above) have rec'vd Ty...NO PML cases reported! :)
To aimee: I want to be realistic about Tysabri's potential
Tysabri is used to try and slow down disease progression and prevent further relapses with accumulating disabilities...(superior efficacy of 67% ain't too shabby ;) ). However, (don't you just love those howevers? lol) there have been many anecdotal reports from patients that state some (if not all) their symptoms have improved, and there is proven data which supports this as improvements in the patient's Quality of Life (which no other MS med can claim).
I hope this info helps, and all my very best to both of you...(you too purplegolfer)...good luck!
aimee813
03-31-2007, 09:49 PM
Thank you so much for your quick and positive reply. I too have been under the impression that anecdotally, people's abilities have improved on Tysabri. I am really enthusiastic about giving it a try. Best to you, now and always!
aimee
aimee
sandiezeb
04-01-2007, 12:08 AM
hi everybody. i was diagnosed, paralyzed below the waist in '84 and recovered from paralyzation with a touch of God. i still deal with some of the scars of ms. i have not taken anything other than procarin patch briefly a few years ago. anyway - i had my first tysabri infusion last fri. i have been praying for this drug since i was pharmacy teching in butte, mt from '96- '01. i just feel it makes sense and the neuro i knew thru work agreed with me. last week after the drug, i noticed my feet were pink and warm instead of grey and frozen (unusual in mt in march). then last nite when i went to bed, my feet felt different. i couldn't put my finger on it but when i ran various objects over/under my feet - i didn't have the babinski's reaction i usually have. so i am believing this is a positive drug that may benefit many - praying for you all - S
unclesam612
04-01-2007, 12:25 AM
I was on tysabri before it was removed fron the market i couldn't wait unill it's return I had no side effects from it the last time.To quote Martha it's a good thing.At least for me I hope it is the same for everyone else
scampergirl
04-01-2007, 11:52 AM
Natatude,
I feel exactly as you do. I have daughter graduating in June and going to college in August. I also want to see her graduate college, get married and have a family. The PML scared me as well but it appears to be a very small risk compared to the potential benefits. I am going through the 3 day IVSM now, the nurse that placed my IV was in on the study group for Tysabri, she said it is a wonderful drug. People that came in wheelchairs were leaving under their owwm power! I am sure that would have been after several treatments and not just the first. I see the neuro on Wednesday to discuss Tysabri, can't wait.
I feel exactly as you do. I have daughter graduating in June and going to college in August. I also want to see her graduate college, get married and have a family. The PML scared me as well but it appears to be a very small risk compared to the potential benefits. I am going through the 3 day IVSM now, the nurse that placed my IV was in on the study group for Tysabri, she said it is a wonderful drug. People that came in wheelchairs were leaving under their owwm power! I am sure that would have been after several treatments and not just the first. I see the neuro on Wednesday to discuss Tysabri, can't wait.
Natatude
04-01-2007, 03:10 PM
Thank You Thank You Thank you! You all have made me feel so much better!!!!!!!!!! I have enough betaseron to get me thru and my last one will be on April 29th,, i will call my neuro later and leave a message for him to call me back about my decision and if i need anymore blood work or anything to make sure my immune system is ok with it, and if i need to be off it for 30 days like the pharmacist said,, i am finally feeling great about this and i hope all goes well for all of us! :)
msladyinca
04-02-2007, 09:41 PM
((((((((((Everyone))))))))))))))
I am so happy for each of you that have had great results on Tysabri, hope for good results, hope not to have disease progression, and dare to have hope again in your lives...,
But I am especially happy for those of you whose fears of PML have been greatly reduced...knowledge IS power!
And for the younger ones here, bravo to you for your courage in being your own patient advocates...I salute you with a standing ovation!
Have a great evening everyone :wave:
I am so happy for each of you that have had great results on Tysabri, hope for good results, hope not to have disease progression, and dare to have hope again in your lives...,
But I am especially happy for those of you whose fears of PML have been greatly reduced...knowledge IS power!
And for the younger ones here, bravo to you for your courage in being your own patient advocates...I salute you with a standing ovation!
Have a great evening everyone :wave:
candle66
04-03-2007, 01:12 AM
How hard is it to get on Tysabri?
I have had MS for 20 years. been on copaxone for 7 years, recently I broken out in hives and get chills. I am thinking I cant continue this med, I can't take Avonex either. there is nothing else for me.
I am afraid of Tysabri because of the risk of death. I just had a baby 9 months ago and want to see her grow up.
I have had MS for 20 years. been on copaxone for 7 years, recently I broken out in hives and get chills. I am thinking I cant continue this med, I can't take Avonex either. there is nothing else for me.
I am afraid of Tysabri because of the risk of death. I just had a baby 9 months ago and want to see her grow up.
Natatude
04-03-2007, 09:05 AM
i called the neuro on Sunday and left a message, he called me back yesterday morning, i told him i was gonna do it,, he said no to order anymore Betaseron and i only had to be off it for 3 weeks,, my last shot will be on April 29th,,i have to stop in next tuesday and sign papers so he can get it started and he said i should be able to have the first dose the first week of June, my husband also called our insurance company and they said as long as i have it done (in-network) which i will, cause both his office and our hospital are in network it will be covered 100% we have Blue Cross/Blue Shield PPO Blue, we have had that Insurance now for a a year and 6 months and i Love it!!!!!!!!!!!!!!!! i guess if u have failed other CRABS it must not be too hard to get, and i failed them all, except Rebif cause they never tried that on me, and he said since Avonex and Betaseron both failed, he wasn't even going to waste time with Rebif cause it would probably fail on me as well.
Karen8550
04-04-2007, 12:32 PM
Hi I have been reading all of your entries about tysabri and am scheduled to start next month but am still very nervous about the possibilty of PML. If there is any one out there who has a documented web site I could go to help me I would really appreciate it. I have already been on Avonex, Betaseran and Rebif with breakthru flare ups on all. This is my hope to feel better. I know there is no cure. But I am so scared of PML. Please someone if you could just help me get thru this I would be so grateful.
Thank you
Karen
Thank you
Karen
msladyinca
04-07-2007, 05:26 PM
Hi Karen,
First of all, there is no need to be scared of the 0.1% risk of PML if you have a confirmed dx of MS, have a non-compromised immune system, and are administered Tysabri as a monotherapy (by itself), per the TOUCH protocol. Also, you should discuss your concerns with your neuro. I'm not a dr., so this is not medical advice. I am, however, a Tysabri patient, scheduled for her 7th infusion on 4/18! Wooooooohooooooo :blob_fire
You stated: If there is any one out there who has a documented web site I could go to help me I would really appreciate it. I do Karen, but posting rules here do not permit me to post same. :(
Might I suggest you do a MS Bl** search for same, using the keywords: My Tysabri Diary or something like that - (not posting anything specific here) ;)
Good luck, and all my best Karen! :)
First of all, there is no need to be scared of the 0.1% risk of PML if you have a confirmed dx of MS, have a non-compromised immune system, and are administered Tysabri as a monotherapy (by itself), per the TOUCH protocol. Also, you should discuss your concerns with your neuro. I'm not a dr., so this is not medical advice. I am, however, a Tysabri patient, scheduled for her 7th infusion on 4/18! Wooooooohooooooo :blob_fire
You stated: If there is any one out there who has a documented web site I could go to help me I would really appreciate it. I do Karen, but posting rules here do not permit me to post same. :(
Might I suggest you do a MS Bl** search for same, using the keywords: My Tysabri Diary or something like that - (not posting anything specific here) ;)
Good luck, and all my best Karen! :)
msladyinca
04-07-2007, 05:46 PM
To candle66,
Hi there dearheart! You said: How hard is it to get on Tysabri?...I have had MS for 20 years. been on copaxone for 7 years, recently I broken out in hives and get chills.
I have had MS for 31 years and am on Tysabri, therefore, if you have a relapsing form of MS (I am Sec. Prog. with relapses), you qualify for Tysabri (in the U.S. that is).
Your neuro needs to be TOUCH Certified to prescribe it, and his/the infusion center and participating pharmacist must also be TOUCH Certified. It is also probably a good idea to call your med. ins. co. (member benefits) to see if they cover Tysabri (Natalizumab).
Hope this information helps dearone - :)
Hi there dearheart! You said: How hard is it to get on Tysabri?...I have had MS for 20 years. been on copaxone for 7 years, recently I broken out in hives and get chills.
I have had MS for 31 years and am on Tysabri, therefore, if you have a relapsing form of MS (I am Sec. Prog. with relapses), you qualify for Tysabri (in the U.S. that is).
Your neuro needs to be TOUCH Certified to prescribe it, and his/the infusion center and participating pharmacist must also be TOUCH Certified. It is also probably a good idea to call your med. ins. co. (member benefits) to see if they cover Tysabri (Natalizumab).
Hope this information helps dearone - :)
purplegolfer
04-15-2007, 07:27 PM
Love all the info that has been shared on this thread- thank you everyone!! Having a slight issue myself with getting the Infusion Center to realize that my Doctor had ordered 6 months of infusions- and then they lost my file. So even though I'm the one with "holes in the brain" I have to do all the follow-up. ACK! I think once we get everything straightened it will all be seamless but what a bother while I'm dealing with it. Hope everyone who had posted here is doing well and that Tysabri does the job!!!
msladyinca
04-15-2007, 08:47 PM
Hi purple :)
Ummm, you said: Having a slight issue myself with getting the Infusion Center to realize that my Doctor had ordered 6 months of infusions
and yet, you posted just last month that you had your first Tysabri infusion...pursuant to the TOUCH protocol, when starting Tysabri, you need to be re-evaluated by your neuro at the 3 mo. mark and then again in another 3 mos. (i.e., the 6 mo. mark) before he can prescribe Tysabri for 6 mos.
Perhaps my prior post confused you as I have been on Tysabri since 10/06 :dizzy: You should probably call your neuro on Monday for clarification of the above dearheart.
All my best, (((((hugs)))))
Lauren
Ummm, you said: Having a slight issue myself with getting the Infusion Center to realize that my Doctor had ordered 6 months of infusions
and yet, you posted just last month that you had your first Tysabri infusion...pursuant to the TOUCH protocol, when starting Tysabri, you need to be re-evaluated by your neuro at the 3 mo. mark and then again in another 3 mos. (i.e., the 6 mo. mark) before he can prescribe Tysabri for 6 mos.
Perhaps my prior post confused you as I have been on Tysabri since 10/06 :dizzy: You should probably call your neuro on Monday for clarification of the above dearheart.
All my best, (((((hugs)))))
Lauren
purplegolfer
04-18-2007, 11:57 AM
Lauren you are too cool. I will call my neuro, "Touch Program" and the infusion center today and straighten out the mess...it's new to everybody that I am dealing with and I am not sure the left hand knows what the right hand is doing!! Thank you again for your guidance!
Jen
Jen
msladyinca
04-18-2007, 12:49 PM
Aww Jen, that's good - I'm happy to offer support to anyone that needs it.
It's probably just a slight misunderstanding and all will be explained and clarified for you...the main thing is:
1) You are being your own patient advocate when it comes to your treatment choice for your disease, and...
2) You are receiving Tysabri, the most superior and effective treatment for your MS by 67% (imho ;) ).
All my best,
Lauren
It's probably just a slight misunderstanding and all will be explained and clarified for you...the main thing is:
1) You are being your own patient advocate when it comes to your treatment choice for your disease, and...
2) You are receiving Tysabri, the most superior and effective treatment for your MS by 67% (imho ;) ).
All my best,
Lauren