Gilenya - The medicine makes you gain weight?
Question posted by Laurard on 17 April 2013
Last updated on 6 June 2019 by Spatrovsky
I am stopped taking Gilenya after about a year and I can say I am loosing weight. I don’t know if the weight was from the drug but it could have been. I weighed more than ever before in my life and now I lost ten pounds in 2-3 weeks. I also stopped drinking soda so really... who knows.
I have put on a lot of weight since starting Gilenya 500mcg. Is this normal? I find it makes no difference to my Multiple Sclerosis. Any advice greatly appreciated.
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.
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.
I will add... when I asked the first neurologist about the media comments on PML and Gilenya, she ignored that question, too! Second doc... had already heard about it.
Good luck and believe in yourself!!
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.
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. :-(
I have taken it for 2 years and I have not gained weight,
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
- Gilenya uses and safety info
- Gilenya information for Healthcare Professionals (includes dosage details)
- Side effects of Gilenya (detailed)
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.