@Francishannon

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Francishannon

Gilenya fingolimod

Hello there ms warriors I am starting a new treatment next week gilyena fingolimod is there any one out there on it and what are the side effects and how do you feel on it I would be great full for your information peace out people

mmhhpp

@mmhhpp

Hifrancishannon it worked like a beauty for two years then i stopped and in one year three relapses i went back to it but this time half dose every other day because lymphocyte were below 0.2 . I've been taking half a dose for four years , MS has progressed ( started going down after one year on half dose) . Spms now. Fingolimod does not stop ms in my case. I hope you have better luck with it. Be careful with the rebounf effect. Take care xxx

Francishannon

@Francishannon

Thanks for your information take care

arknat

@arknat

@francishannon, Been on it last 1.5 years. I've had clean MRIs (brain, spine) and no relapses. Old symptoms (prior to Gilenya) show up during times of hot humid weather, anxiety, lack of sleep etc. Other than border line lymphocyte count which is still within normal ranges, I have no other side effects worth mentioning. I really like the convenience of Gilenya. Wish you the very best.

roodruss

@roodruss

My daughter took as first line for 6 months, absolutely no symptoms or problems with this med but MRI showed multiple new lesions. Very disappointing this med did not work because so easy to take. Moving to tysabri or lemtrada next.

arknat

@arknat

Hi @d-hartie, You mentioned that you wished you didnt come of Gilenya .. Why do you say that ? Didnt lemtrada not work well for you ? I'm close to year 2 and doing well on Gilenya so far. My neuro was saying Ocrevus and Lemtrada will be considered if I dont continue to do good ... Thanks.

arknat

@arknat

Hi @d-hartie, Just saw your other post "Has Lemtrada worked for you?". Its an eye opener for folks to remember that Lemtrada may fail for a few. And of course there is no way of determining that earlier. Well, welcome to the uncertainty of the available DMTs.

mmhhpp

@mmhhpp

Yes arknat the uncertainty...... so many drugs.....and none stopping this s....

arknat

@arknat

Hi @d-hartie, Was wondering if you had a reason to come of Gilenya (replapses/MRI etc.) ? I may have to address that sometime soon ... Thanks.

gowens

@gowens

I have been on last few years and only issues are high liver functions which is still being monitored other than just the usual ms issues tiredness, stress find difficult.