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-   -   Has anyone stopped Tysabri for any reason? (https://www.neurotalk.org/multiple-sclerosis/145683-stopped-tysabri-reason.html)

Natalie8 03-07-2011 03:06 AM

Hi -- I may be going off Tysabri soon and switching to Gilenya. If I do I will be off it for 60 days (which I do anyhow since I get it every other month). Then on day 60 I will have 1,000 mg. of steroids IV and on day 90 I will start Gilenya. The steroidS are a safety measure to prevent relapse or the rebound effect. I always thought that copaxone took several months to kick in and work. Good luck! Keep us posted. :)

laurasari 03-07-2011 07:29 AM

Natalie

I also thought that when i went on Copaxone originally 10 years ago they told me it takes a few months to syart working..

You mentioned you do Ty every other month, do you have any problems in between?

Thanks and good luck
laurie f

EddieF 03-09-2011 08:37 PM

I went off Ty to try Copaxone again and that didn't last a month. Heck with daily shots.

ewizabeth 03-13-2011 12:52 AM

I've been back on Copaxone and off Tysabri for almost a year and a half and doing great.

I had my bi-annual checkup with the neuro last week and all of my neuro checks were great. He didn't mention anything better than Copaxone so I'm staying with it for now. He did tell me that there are many more cases of PML and he doesn't think Tysabri is safe. I reminded him that I'm doing better on Copaxone than I did on Tysabri. He asked me about my worst symptom and I told him it is definitely fatigue but I'm grateful because things could be much worse.

I don't argue with anyone who is doing well on Tysabri and aware of the risks. If I were in that position I know I'd do the same.

azoyizes 03-14-2011 11:49 AM

I visited an MS specialist last week, referred to him by my neurologist here. I'm set to go back this week for a blood test to look for the virus that causes PML. Last week, I had my 19th infusion and I've never been checked for the virus.

I've never had a reaction to the TY. If I am virus free-I want to stay on TY.

I've never heard of anyone getting TY every other month. I guess the doctors are trying out different things on different people. My neurologist mentioned at my last visit that studies suggest people on TY for two years should take a six-month break from it. I had never heard about that either.

The MS specialist was great. He spent 50 minutes with me, first going over my past MS history, then a complete neuro exam, then walking up and down the hallway without my Rollator and without Monty, my service dog. In April, he's set up an MRI of my brain, cervical spine, and thoracic spine with and without contrast, which sounds like we'll be there a very long time.

I had to be off Betaseron three months before I could start Tysabri.


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