I just started taking gilenya 3 days ago and wondering has anyone gotten positive results from it. Did it improve anything or everything remained the same.
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Been on it since June of 2012. Have had two relapses but have rebounded from both - one with IVSM the other without. Since going on G, it was the first time that I did not have new lesions (was on Copaxone prior). Do have cog fog, but climbed an interior rock wall last week. It does not seem to give me side effects other than low lymphocyte count. Nothing like what I read for Tec.
I do take lots of supplements so IŽll never know if the G is the mover and the shaker or just really expensive fluff.
Supplements: B vits, D 5k per day, NAC, NAG, probiotic, Mg, Ca, ALA, CoQ, primrose oil, fish oil and only use olive oil and coconut oils for fats. Also eat sardines. -
I have been on Gilenya for over 2 yrs and my sxs are the same, which is much better then being worse.
Neuros say these meds do not help current sxs, but I've heard positive stories on this site from DMD.
GL and I wish the best for you,
TS, dx RRMS 1995Comment
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Old thread but I just saw it. When I first started G I did notice some improvement however it turned out the improvement was largely caused by the lack of side effects vs. Betaseron.
Once I got used to not feeling sick all the time I would say no improvement but it has done wonders in terms of getting worse. I am 5 years on G now and only slight degradation in overall well being. I was dropping fairly rapidly on Betaseron so take that for what it is worth.Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou
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Update:
Just had another MRI and have been on G since June of 2012- stable MRI, no new lesions, no brain volume atrophy, and one year relapse free- so, yes, I did have two relapses (5/13 and 10/13 which were curiously about 4-6 weeks after very stressful events) while on G, but have had no new brain lesions since starting. The relapses were with spinal lesions. Have had the reappearance of some former sx and some migraines. Am now sensitive to sugar and simple carbs- even gluten free pasta can give me leg cramps
Have some cog fog and fatigue. Still working and living independently. Noticing some loss of grip strength. Sense of humor intact.
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