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changing my DMD

Hi everyone

I saw my ms neuro last week and she feels Tecfidera is not working for me - I’ve been on it for 5 months with no real side effects but I had a relapse the week before taking it and since then ongoing gradual deterioration mainly in my legs and feet. She is arranging for me to try Gilenya. Does anyone in this forum have experience of this drug? I’m aware that I will go on the day ward for 6 hours to monitor the effects of the first tablet. Fingers crossed this one works.

Thank you

Hope it all works out for you

Hi Fishgoose

I’ve been on Gilenya for 2 years. I switched after Rebif stopped working for me.

The 6 hours observation at first dose was a non-event, I took my overnight bag in case of any drama but the biggest problem was whiling away 6 long hours. I took a novel, puzzle books, my iPad loaded up with films etc. I even had a little nap in the afternoon so I wasn’t too tired for the journey home.

After that, I just pop a pill every day and forget about it. No side effects to worry about. My nurse warned me that, as the drug lowers your white blood cell count, I might find I would be prone to infections but I haven’t even picked up a cold this winter so far and I work in a high school surrounded by teenagers and all the usual childhood illnesses. In fact, my line manager commented that my absence record is better than some other colleagues who don’t have a chronic condition!

Good luck whatever you decide.

Tracey x

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Thank you for your replies! That’s good to hear Tracey. I must admit I’m worried that the drug isn’t going to work. Feeling low today as the physio confirmed that my walking has changed again and my legs are weaker. I already wear braces and use a stick. I’m going for a pre-assessment next week and if that’s ok I will go in for the 6 hours on 26th Jan. How did you know Rebif wasn’t working if you don’t mind me asking?

Fishgoose x