Going on Gilenya next week
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ruststar
Posts: 489 Member
Wednesday I have an appointment at the VA to get monitored for the day as I take the first dose. I've been symptom-free for about 5 or 6 years, and just this week I started feeling symptoms again. I'm worried about taking any medication, but my last MRI has shown new lesions, and clearly I'm feeling something new, so I can't avoid the meds anymore. Has anyone started Gilenya who could share their experience with it? Are there any side effects?
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Replies
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Hi,
I've been on Gilenya since May, and everything is going fine. I feel pretty much normal, haven't had any side effects. Since I was diagnosed in 2008, my only attacks have been a result of changing medications. (about 3 months later, when the old one wears off, I have had an attack each time)
The testing was annoying, but since then all has been good.
Feel free to contact me if you have any other questions.
Jane0 -
I started Gilenya in January 2012, so I am coming up on my 1yr anniversary. It was the best decision I ever made. For the 1st month I did get headaches and had an issue with upset stomach and gas. After that 1st month I have not had any other side effects. I have had no major relapses, I did have a new area of tingling sensations on my back but neuro feels that may or may not be from the MS he thinks it could be pinched nerve. Haven't had a chance to have an MRI yet.
All in all I am sooooo glad I switched to this med, the biggest thing for me is that it doesn't make me think about the MS anymore. I am still taking a med every day but I just swallow a pill and move on, no refrigeration, no terrible painful shots, no site reactions, no having to dispose of the syringes.......MS is no longer "in my face" it's no different than taking an aspirin
Best of all I got on the co-pay assistance program from Gilenya and the first year is free!
Good luck!0 -
Thanks for responding! They moved my date to January 2nd, and it's happening just in time. I'm on day 9 of all day headaches, and the fatigue is relly wearing me out. I went for 5 years without symptoms, and no medication, so I haven't really had to think much about my MS, and now it's all coming back. I was holding out for a good oral mediction, and I hope this is the one.0
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I have been on Gilenya for a year and half now. Also very happy I am on it. Previosuly was on Rebif and Copaxone. Dx 10 plus years ago. Knock on wood...no side effects that I can tell.
Good luck.0 -
Thank you - I'm feeling hopeful. I've been on all the ABC drugs plus Rebif, and the side effects weren't worth it while I was experiencing a remission of symptoms. I was holding out for a decent oral medication.0
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Hi,
I am on Copaxone now and am having a relapse - we think. I had a new MRI yesterday, but have not heard about the results yet. If there are new active lesions, my Dr wants me to switch meds. What was it like to switch? My other option is Tysabri and I am scared of that.0 -
I have switched once from Copaxone to Rebif then from Rebif to Gilenya. No issues switching, the transition was fairly easy. Never used Tysabri. Good luck.0
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I've been on Gilenya 1.5 years now without any problems, it's the only medication I've been on after having two flares within a few months (I had one 2 years before that too). So far so good, I had a repeat MRI a year after I started it and my neurologist said a lot of the lesions from before are gone. And I feel pretty good. Good luck, hope it works for you!0
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I've been on Gilenya 1.5 years now without any problems, it's the only medication I've been on after having two flares within a few months (I had one 2 years before that too). So far so good, I had a repeat MRI a year after I started it and my neurologist said a lot of the lesions from before are gone. And I feel pretty good. Good luck, hope it works for you!
That's great to hear!0 -
Hi,
I am on Copaxone now and am having a relapse - we think. I had a new MRI yesterday, but have not heard about the results yet. If there are new active lesions, my Dr wants me to switch meds. What was it like to switch? My other option is Tysabri and I am scared of that.
I was hoping to go on Tsabri because I hear it gives you lots of energy. I didn't qualify because I carry the JC Virus (lots of people do).
I've switched meds 3 times due to insurance issues and/or side effects, and each time I had a light relapse exactly 3 months after stopping the old medicine. By the third time I was ready for it. These have been my only relapses since 2008!
By the way does anyone else relapse when they change meds?
Good luck, it will be ok.0 -
Update: I just got home from a 2-day stay in the hopital while they monitored me on the first 2 doses of Gilenya. They had me stay an extra night because my heart dropped into the 40's multiple times and there were some slight irregularities on the EKG. I feel aboslutely fine, though, and my natural resting heart rate is in the low 50s, so eventually they had to agree to let me go home. All seems to be going well and I'm feeling hopeful this one won't have the side effects I dealt with on all the other meds.0
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glad to read you are doing well, i wish u luck.0
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So I've been on Gilenya for about three weeks now and I experience a tightness in my chest on a daily basis until I started taking the medication just before bed (in which case I was sleeping through it). Yesterday, however, the tightness started in the afternoon and got progressively stronger, and then came the shortness of breath and a bit of nausea, all symptoms of a heart attack in a women. Scary trip to the ER where I learned that no, I'm not having a heart attack, but they can't figure out the chest tightness (not a one of them had heard of this medication. It is weird to be more knowledgable than a doctor). I went home, got some sleep, and now I'm sitting by the phone, my chest still really tight, waiting on the neurology department to call me back.
Has anyone else experienced this on Gilenya? Does it go away?0 -
Sounds scary. I hope neurology gets back to you quickly.
:flowerforyou:0 -
I hope the doc can help you out soon.
I have had no noticeable side effects from Gilenya so far (been over a year)
Rebif and Copaxone had major side effects.0 -
I have been taking Gilenya since they came out with it,a couple years I think,so far no side effects and no relapses,yay! I was taking Rebif for a while but got really tired of side effects,I felt sick every day,and I wanted to have a baby. 0
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So I've been on Gilenya for about three weeks now and I experience a tightness in my chest on a daily basis until I started taking the medication just before bed (in which case I was sleeping through it). Yesterday, however, the tightness started in the afternoon and got progressively stronger, and then came the shortness of breath and a bit of nausea, all symptoms of a heart attack in a women. Scary trip to the ER where I learned that no, I'm not having a heart attack, but they can't figure out the chest tightness (not a one of them had heard of this medication. It is weird to be more knowledgable than a doctor). I went home, got some sleep, and now I'm sitting by the phone, my chest still really tight, waiting on the neurology department to call me back.
Has anyone else experienced this on Gilenya? Does it go away?
it sounds like something I read about called the MS "hug"0 -
Thank you! That's exactly what it feels like and I feel so relieved to know it's a real thing. Thankfully those feelings have passed, but if it comes back again I'll know more about it.0
