tysabri stories

Hi I was diagnosed with MS in May of 2001. My neurologolist wants to me to try Tysabri. I have already tried the shots for ms and they don't work to well with me. But I already have most of the side of effects that go with tysabri. Please help me.

I wanted to let all my new friends know that I had my first MRI today since I started taking the Tysabri 6 months ago. I was diagnosed in 1995 and in 1996 I started Avonex- which made me sick everyday for years. I changed to Copaxon in 2000 and I hated it, so I decided to quit all MS medications, except for muscle relaxers, anti-depressants, etc. In 2007, my new neurologist asked me to try Rebif, but my insurance would not pay for it.

Hi everyone- My fiancé lives in Germany (German citizen) and I live in the US (US citizen). He has received monthly Tysabri infusions for two years. We really want to see if it’s feasible for him to move here vs. me moving there for a multitude of reasons. However, I am nervous that he would somehow end up with a doctor here that wouldn’t extend his monthly Tysabri...I’ve read multiple accounts of people getting 6 infusions or so, but he is indefinitely on Tysabri for RRMS.

m with you and very curious as to what the final word will be if it is Gilenya or Tysabri related. I have read several stories today about this and all they have right now are questions.

Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!

I spoke to my neuro when I was thinking of getting one, because I had already been on Tysabri for 2 yrs at that point, and Tysabri is an immunosuppressant. My neuro could see no reason why I couldn't get one - just stressed how important it was keep it clean while it was healing, and be sure I had it done at a reputable place. I've had no problems with it at all. It has never been an issue with MRIs, either.

The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff. Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile.

They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point.

Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.

I would like some information/details from anyone who has had (or seen) the rash you can get from Tysabril and/or PML?? I have been on Tysabri 10 years so far without any major issues. I was outside after my treatment for 10 minutes or so. After taking my shirt off, my husband gasped and asked what was wrong with my back.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?

He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!

I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?

So now he wants to take me off of the Copaxone, I have been on for a month and a half, and put me on Tysabri. I started the application process and now waiting for them to call me and get the ball rolling on that. Now he mentioned that this is the top of the line MS medication so that does give me some relief. P.S. I did test negetive for the JC Virus. Any thoughts, experiences etc on this Tysabri??!!

The research side of my MS Practice has identified a CSF biomarker for disease activity. The research is featured on the cover of this month's Multiple Sclerosis Journal. http://tischms.org/news/tisch-ms-breakthrough-biomarker-research-featured-cover-article-october-2013-issue-multiple I'm a beneficiary of this discovery. I had been on Tysabri for 20 months. At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera.

side effects for each other medicine and now this with tysabri. Has anyone else been on tysabri and developed c. Diff from it? If so, what did they do to help it? Stop tysabri? Any information would be greatly appreciated.

There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.

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