Gilenya

[kyaro123]

I'm looking for experience stories with Gilenya. I'm considering it for my next treatment plan, but I'm terrified of the side effects. My reactions to Tecfidera wiped me out for a week, so I'm a little gun shy. My problem symptoms are brain fog and deteriorating vision in my right eye. Thanks in advance for your help.

[Iona60]

kyaro123 I've been on Gilenya for a year. I'm still terrified of the possible side effects, but I try not to think about them. It hasn't changed any of my symptoms. I've had one relapse and no new lesions. I see my dermatologist every 4 months because of the skin cancer warnings, an eye doctor every 4 to 6 months because of the macular edema risk, and I get bloodwork every 3 to 4 months to check on the white cell count (I think) and to check on the JC virus status.

[Cwacker]

Hi kyaro123

I've been on Gilenya for 9 months and haven't noticed that it has helped or caused any other problems. I'm not too concerned about side effects, since I was on a similar trial drug for 18 months and did great on it. But I have recently developed an ANNOYING itch with no visual signs. My MS nurse relayed the info to my neurologist, who doesn't feel it is from the meds. Has anyone else out there on Gilenya experienced this? I went to a dermatologist for it and she didn't know what was causing it, prescribed an anti-itch cream which turned out to be over $600 at costco pharmacy, needless to say I did not fill it. Next stop, my primary care for bloodwork.

[kyaro123 in reply to Cwacker]

Hi Cwacker, I have had mysterious itches in different spots for years and I'm not on any MS meds right now. I just spent the last 2 weeks at my son and daughter-in-law's house helping with my new grandson. Now that I'm off fulltime Gaga duty, I'm probably going to try Gilenya next week.

[Jesmcd2 CommunityAmbassador]

kyaro123 have you checked out MSAA's S.E.A.R.C.H. ? It has information about the different DMT's. Along with information about side effects. It also has questions to ask your neurologist.😊

mymsaa.org/ms-information/s...

Jes 🌠

[kyaro123 in reply to Jesmcd2]

I've studied everything I can get my hands on. With Tecfidera, the explosive diarrhea, vomiting, very painful flushing knocked me on my butt for a week. I tried to stay on it till all that passed, but I couldn't even leave the house. With Gilenya, I could do all of that plus flu-like symptoms, sinusitis, leg pain. I haven't heard any serious reaction in this room, so maybe I will? A little scary to say the least. Thanks for the responses.

[Jesmcd2 CommunityAmbassador in reply to kyaro123]

You and your Neuro need to have a serious talk about your meds. I hope it works out for ! kyaro123 make sure you keep us updated ok?😁

Jes 🌠