Multiple Sclerosis (MS) Support Group

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brianap 03/24/2010

After my appt this afternoon I've come down to a few options. Stay on Rebif, the scar tissue is getting bad- switch to Avonex, or enroll in the ACT-1228800 study, where I'll have a 75% chance of being on the drug and 100% chance of not having to do shots. I was told the drug is a second generation of fingolimod and am looking over the paperwork/ work effects etc. and seriously considering it. The doc also offered Tsyabri if I wanted. Just anything to get me to take something. I'm not that badly off. Really tired of the needles and marks they leave behind. Is anyone else considering this study or been on fingolimod? And how did it work for you/and or side effects? Thanks.

Neener 03/25/2010

There have been reports of serious side effects from the oral drugs. I'm on Tysabri just started in January and have only had minor side effects with have lessened with each infusion. My neurologist made mention of the oral drugs at my last visit, but said that she will probably be hesitant to prescribe them until she knows more about long term safety. I would, of course, study it out before you make your decision. There are some articles that were published recently about fingolimod and cladribine. They are suppose to be on the market in 2011.

http://www.medscape.com/viewarticle/715566

Neener 03/25/2010

Of course I do know that PML is a serious but rare side effect of Tysabri as well before anyone jumps in and let me know that :)

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