Who here is on Tysabri and what is your experience?

[Una]

I am curious about this, I have been offered this treatment and am now contemplating. I would like to hear from folks who have and what they have experienced.
Thanks.

[fearless cat]

Yes I am curious also :confused:

[vitowah]

Hi, I was on Tysabri as part of the Tysabri + Avonex study. Prior to entering the study, I was on Avonex (for 4-1/2 years) and was experiencing attacks about every 6 months. I was progressing but still able to walk. During the study, I went for more than 2 years without any attacks or noticable progression. I didn't know if I was on the drug or a placebo at the time. But once the study was stopped because of the PML deaths, I was contacted and told that I had been on the drug.

The study, and my receiving Tysabri, has been done for approximately 20 months and I have progressed significantly since coming off of the Tysbri. I am now having to use a mobility scooter, a walker or forearm crutches to get around. I swithed to Rebif about a year ago, but progression is continuing noticably. I was recently interviewed by Health Talk. My interview is avialable on their website at http://www.healthtalk.com/multiplesclerosis/programs/10_542/index.cfm.
It is the link on the page entitled "one man's Tysabri experience". I am now scheduled to go back on Tysabri within the next week or so.

As far as side effects from the Tysabri, I honestly did not have any side effects other than feeling a little flush immediately after the infusion. And after the first couple of infusions, the feeling flush stopped occurring.

[*Joy*]

Thanks for sharing your video, Vito (or should I call you AL? :)) Best of luck to you in the future. I also wanted to express my concern and sympathy for the MS progression you've experienced since stopping Tysabri.

Una, I only had one infusion before it was pulled off the market, not long enough to comment. Have you tried all the ABCRs?

Sincerely,

[MS Mommy]

Thanks for sharing your experience. I am waiting for my insurance BCBS to RE-review my case. They denied my request, even thought it was submitted by my doc, and supported by tons of data.

Evidently being anemic as a result of full, and then even half doses, of interferon (Avonex then Rebif) doesn't count as "failing". They should try having MS fatigue AND anemia at the same time. They'd fail right on their faces!

I think insurance is like social security, then NEVER approve you on the first request. Such rats!

[Una]

Vito,
Thanks very much for the info. You sound like you have been through the wringer as far as some of the CARBS go. I did well Avonex and wish I had stayed on it. Then again, it's just hard to say wether I would have stayed well or just progressed anyway.

btw; Got any good Italian recipes :)

[Virginia]

Una, I am glad you started this post. I am in the same situation. My Neurologist talked to me about it last Thursday. Since that time it has weighed heavily on my mind.

He feels there are three groups of people 1.Those who are doing so well that they do not need to change. 2. Those who are doing so bad that they need to try Tysabri. 3. Those that are in the middle. We are doing fair, but with many symptoms. He feels that because of some of the symptoms that I have that my disease is active, therefore I am a candidate for Tysabri.

What to do? I don't know. I really wish more people were posting and then we might get a better idea of what is going on with Tysabri. I wish those who are on in would start a "Tysabri Check In" thread.

I have put off my decision, at least until January, unless something comes up during that time that indicates I need to do something else. I am currently on Rebif and have been for 4 years. I did not do well on Avonex or Copaxone, but feel that I have done better with Rebif. Still, I realize that progression is probably taking place. However, would I also progress on Tysabri? Who knows?

This is a big decision for me. Good luck to all of you who may be in a similar situation.

Virginia

[Pegakafarmgirl]

I am starting my second infusion the 18th of October, yes I started it before it was pulled off the market, and went to Rebif, till my insurance decided to play head games with co/pay:mad: so I sat tweedling my thumbs doing nothing except acupuncture for MS patients,,, starting sliding backwards, and when it came back ,, had a seminar, got it approved for insurance,,

I see no differnce right at the moment,, cept, my blood pressure drops to fast, fluish {?},, maybe a little,, it takes a hour, and the nurse keeps checking blood pressure, and watching for reactions,, the second set of infusions , { I am told this }, might be a little tougher on a persons,,, but I never do things normally,, look at the blood pressure dropping,, its suppose to rise not drop with this infusion <sigh>

good luck,

Peg

[Una]

I am bumping this post up to see if there are any other people who have had this treatment. Thanks to those of you who have responded so far. Please keep us posted as to how you are doing.

I think I am going to give this a try.

[stitch]

Hi Una,

I took part in a 6 month double-blind combination study a few years back.

I felt the same during the study as I did before it began and after it concluded.

The study was unblinded after the PML articles appeared in NEJM. I was completely surprised to learn that I was part of the Tysabri group. I was sure that I had been given placebo.

[DlH]

My nero wants me to try it as well.But before this site went down someone posted that it was more for folks with RR MS and not folks with PP or SP??I dont know but i must try something cuz i am progressing fast:( I have been DX with PP/sp MS.




Dave

[MS Mommy]

I got my insurance approval last Friday, finally.

My doc's office called today to let me know that they are ready to begin Tysabri infusions.

I am scheduled to get my first dose next Friday.

I am cautiously optimistic. I desperately want it to do all it is supposed to do to slow the progression of this disease. But seceretly I am hoping it also improves my symptoms NOW!

To those of you with experience, does it take months to see results? I am going to assume that it does, and be pleasantly suprised if it does not.

I am excited, scared, nervous, optimistic all at the same time! I'm a mess!

Wish me luck. I feel like I'm about to jump out of an airplane, hoping my chute opens properly.

I let you know how it goes.