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If you were to come off one of the drugs (Tysabri, Gilenya) that have been associated with rebound relapses, at what stage after stopping would you expect this to happen?

I halved my Gilenya dose 2 months ago (took it every second day), then stopped completely 5 weeks ago. So far so good, but I'm not sure whether I should still be waiting for it!

Thanks :)
I don't know the technical answer to this…but I'm sure you shouldn't be waiting for the rebound relapse to come! Picture your continuing good health, and trust that you are doing all you can to stay really well.

Someone else may have the days, weeks, months kind of answer you are no doubt looking for really.

Great news that you are doing well.

OMG April 2010 OMS June 2010
Focus on feeling really well, you are your own statistic your own path and it is fab that you are feeling well.

You have come off the Gilenya slowly, so that should minimise the chance of a rebound. I came off Gilenya in Nov 2012, by doing much as you did - took every second dose for a month, then every third day for a month. I had no rebounds or relapses that I noticed. At that stage I had been fully OMS for about a year. I had a followup MRI a year after the coming off Gilenya, it showed two small new lesions, and looking back I now attribute those to the "rebound effect" of coming off Gilenya. I have had some small sensory issues since then, some tingling in my arm, and numbness in one hand, but apart from that I have been really great. I experienced no big relapse and I continue to not want to put drugs in my body. I realise that people are all different places with this, and that some choose to use a drug, but I am glad to not be doing this.

I have to push hard against the grain of what my neurologist is telling me about this, he really wants me to be back on a drug, for his peace of mind, not mine! But I feel so much better off the drugs, that I am going to be strong about this and continue to argue against them.

CB, I hope you can feel happy with your decision and to be able to not keep looking around the corner for a relapse. Hopefully it wont come!

Diagnosis Apr 2010, Coeliac Nov 2010. Procrastinated a bit. Fully OMS Sept 2011.
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