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Gilenya - The medicine makes you gain weight?

Responses (5)

Anonymous 17 Apr 2013

Hello Laurard. I researched and could not find that Gilenya, can cause a increase or decrease in regards to body weight. Best of wishes, pledge

Laurard 17 Apr 2013

What a relief :-) im going to start gilenya in 3 weeks after 11 yrs with Avonex wish me luck

Aren 17 Apr 2013

I have taken it for 2 years and I have not gained weight,

Laurard 17 Apr 2013

Great thanks im going to start gilenya in 3 weeks wish me luck :-)

Aren 18 Apr 2013

good luck! Your gonna love not having needles and my side effects are nothing. I used to take Avonex also

IlliniMS 13 Aug 2013

I posted this elsewhere on the site, but thought that my results might be of interest.

I started Gilenya on 1-9-13 and gained five pounds in the first week. It is now August and I've gained 19 total pounds. I haven't changed my diet at all (vegan plant-based) and cannot get the weight off. My neuro didn't believe me when I told her... but I am certain the Gilenya is the cause. Prior to this med, I was on REBIF and maintained my original weight for two years.

Very disheartened, Battling MS is challenge enough, but weight that I fought to lose for years coming back in less than six months is horrifying and depressing.

I'm starting to question the continued use of this med. :-(

js3davis 22 Jul 2014

i have been taking gilenya for 1 year now & have gained nearly 20 lbs. during the year, i followed weight watchers for 4 months & it didnt help me at all. feeling very frustrated & chubby.

PsGll 31 Aug 2015

Having lost nearly 40 kilos I'd kept my weight stable for 4.5 years. I started on Gilenya in June 2015 and have already (End August 2015) gained about 7 pounds, which is about 3.5 kilos in just over 2 months! I've done everything to keep my weight down but it just doesn't happen. On the other hand the Gilenya is controlling the MS which Rebiff, just didn't do.
Which is the better of the two evils?

KelliJay 14 Aug 2013

I've been on Gilenya for just under 2 years after using Copaxone. The only time I gained weight was during the time between Gilenya and Copaxone. My neurologist said that weight gain is not a side effect.

IlliniMS 17 Aug 2016

I originally posted on the topic in 2013 when I was on Gilenya. I discontinued the medication after 8 months due to a weight gain of 43 pounds... and dye to the European PML news.

At the same time, I switched to a new neurologist because the prescribing neurologist told me that weight gain was an undocumented issue. Also, that I was imagining it.

So...

I have had a new neurologist since January 2014. I went back to Rebif and I am still battling to lose the weight.

I will note that my new neurologist told me a couple of things about medications at our first visit:

1. Medications have different impacts for different people. If you have an event that can be documented - it should not be ignored. If you are concerned, your MD should be, too.

2. Pharmaceutical companies track these types of events. That information should be disclosed to the company.

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