Gilenya or Fingalomide?

ruststar

Not sure I spelled either of those correctly...

Anyway, my doctor at the VA called me to let me know the results of my last MRI and they weren't good. She's urging me to go back on medication - I've been off them for 5 years. The only options that I think I can deal with are the two oral medications, since I tried all the injectables, and I'm wondering what other's experiences have been with either of them. I'm not yet scheduled for any of the pretesting, so I still have a choice at this point.

Sinisi2012

I've been using Gilenya since Jan 6th of this year after 9yrs of Rebif. Of course the initial testing is a pain but better safe than sorry. I LOVE IT! No more shots! In the beginning I had a few side effects of upset stomach and gas and slight headache but it went away after a few weeks. No side effects now and no increase in any MS symptoms. I have not had any new MRIs since going on it so I am not sure if I have had any "silent" activity.
Overall I am very happy I made the switch. Best of all I got on the co-pay assistance program so for the 1st year it's free
Good luck with whatever you choose.

ruststar

In doing some reading today I realized that they are the same thing - Gilenya is just the brand name. My doctor talked about it like they were two seperate things. I've got my eye test scheduled and I'm waiting on the EKG and dermatolgy appointments, but it sounds like Gilenya is going to be it. Thanks for sharing your experience.

LizHowerton

I've been on Gilenya for a year now...and I absolutely love it.

I did Rebif for 5 years, nothing for a few years, and Copaxone before that.

I do not feel any side effects with Gilenya.

Good luck whatever you decide.....

ruststar

I've been on Gilenya for a year now...and I absolutely love it.

I did Rebif for 5 years, nothing for a few years, and Copaxone before that.

I do not feel any side effects with Gilenya.

Good luck whatever you decide.....

That's great to hear - the side effects of the injectables are part of why I've been off meds for the last few years.

psmd

I am currently on Gilenya, since August of last year. Only side effect is slightly feeling like you might get sick with a cold any minute, but so far I've gotten sick only twice but nothing worse than usual in the past. Honestly I feel like it's an amazing medication, I haven't had any new symptoms since last year and my MRI this year looked a lot better.

There is another oral medication, I forget the name of it, maybe it's Copaxone, but it's interferon, which has awful side effects. Between the two I opted for Gilenya and feel like I made the right choice.

Good luck to you!!!

tidesong

There is another oral medication, I forget the name of it, maybe it's Copaxone, but it's interferon, which has awful side effects. Between the two I opted for Gilenya and feel like I made the right choice.

There are no other approved by the FDA oral medications for the treatment of MS disease progression at this time. You might be thinking of Low-Dose Naltrexone, which is sometimes given off-label for MS patients. Copaxone is an injection, once a day, and it is NOT an interferon. Neither Copaxone nor LDN is an interferon. The interferons are Avonex, Betaseron, and Rebif. Interferons have to be given as injections for them to work.

The only other pill touted as an MS drug is Ampyra, which is used to supposedly improve walking in people who have MS. It is NOT a disease-modifying drug though.

kmac524

I was diagnosed 12 years ago & haven't taken any of the MS meds. I've had a few flare ups, but nothing I couldn't deal with. I suffer daily from the typical stuff - heat sensitivity, numbness & tingling in fingers & toes, FATIGUE, etc. No major changes in MRI's. I decided to give Gilenya a try. I have done all the pre-drug tests (EKG, opthamologist, etc), & I'm scheduled to start Gilenya on the 26th of July.

I'm starting to have second thoughts. Maybe I'm just scared. I've dealt with MS just fine with no meds this long, so why start now? So many "what if's"

ruststar

I was diagnosed 12 years ago & haven't taken any of the MS meds. I've had a few flare ups, but nothing I couldn't deal with. I suffer daily from the typical stuff - heat sensitivity, numbness & tingling in fingers & toes, FATIGUE, etc. No major changes in MRI's. I decided to give Gilenya a try. I have done all the pre-drug tests (EKG, opthamologist, etc), & I'm scheduled to start Gilenya on the 26th of July.

I'm starting to have second thoughts. Maybe I'm just scared. I've dealt with MS just fine with no meds this long, so why start now? So many "what if's"

I've gone without medication for the last 5 years because I don't experience ANY symptoms when I'm not in a flare, and the side effects weren't worth it. If I was experiencing even a fraction of what you're dealing with on a daily basis, I would have been on medication - those are things I only experience when a flare is coming on. Medication may help improve your life on a daily basis.