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 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!!
- Gilenya Information for Consumers
- Gilenya Information for Healthcare Professionals (includes dosage details)
- Side Effects of Gilenya (detailed)
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