Gilenya and Dizziness: What Users Say

• Doc...
• Taken for 1 to 2 years
• May 30, 2014

For Multiple Sclerosis "I have been on Gilenya for a year now and I am very happy with it. I can now do things I could not do while on Copaxone or Avonex. One issue I have found while on Gilenya is I get dizzy spells often, but other than that I am happy. For those of you that say it's costly, call your Gilenya rep and get them to pay your co-pay, it helps. Check with your doctor about taking more Vitamin D and Vitamin C, this will help with colds etc."

• GoW...
• March 7, 2013

For Multiple Sclerosis "I have Multiple Sclerosis, and work for my neurologist. I have been on Gilenya for 6 months. I am so thankful for a pill rather than an injection. I have had no side effects, that I can say for sure. I have had dizziness and nausea prior to the change in medicine. I am unsure if everyone on these disease-modifying medications is aware that they do not 'cure' or get rid of MS symptoms you already have. These medications are to put the MS in a remissive state."

• lor...
• September 15, 2011

For Multiple Sclerosis "I have been taking this medicine for 4 weeks now, and my weight keeps going up. 15 pounds in the last three weeks. Also, I feel dizzy out of the blue. Watching TV, folding laundry, eating lunch, sitting, standing, or lying down, it's all the same."

• Gra...
• April 13, 2012

For Multiple Sclerosis "I have been on Gilenya for 5 weeks with minimal side effects. Had some nausea the first 5 days and took meclizine over the counter, and it quickly resolved. Due to the MS, I was dizzy and felt like I was pitching forward when driving and going down steps. I am not nearly as dizzy, and the feeling of falling forward is much less. I hated the Copaxone injections, which began making dents in my thighs, not to mention the pain, itching, and swelling at the injection site."

• leo...
• March 6, 2011

For Multiple Sclerosis "I have been on this for six weeks now. No major side effects except some dizziness. I wonder if this is worth worrying about. But the ease of the pill is what makes it so attractive. I wonder how long before I see real improvements."

• Ste...
• Taken for 2 to 5 years
• July 10, 2017

For Multiple Sclerosis "Gilenya worked wonders for me the first 18 months. I felt great, MS stabilized. Then I started slowly getting worse: fatigue, dizziness, bad headaches. Still no MS progression or relapses, but I felt awful! Elected to take the chance to come off the drug and try another just to feel better. Within 6 days after stopping G, I felt amazing, no more fatigue, no headaches, and the dizziness has eased. At day 18 off so far, and I continue to feel better each day. Clearly does its job, but at the expense of my life-it just wasn't worth the side effects."

• Lil...
• Taken for less than 1 month
• March 6, 2013

For Multiple Sclerosis "Have been on the meds for 5 days now. It has made me feel tired, dizzy, and I have a pain in the heart area. This is nothing to do with the heart, as I have had another few ECGs to check this pain. They don't think it's related, but it's strange that I have only started this medication and this happens. But will be sticking with it."

• Ema...
• Taken for 1 to 6 months
• November 28, 2018

For Multiple Sclerosis "I was recently diagnosed with MS, and my doctor put me on Gilenya. I did not feel comfortable with all the testing that had to be done prior to beginning the treatment. At first, things were okay, but I noticed I no longer wanted to do anything. I had extreme anxiety, was short-fused, and began feeling faint and dizzy. I went to my primary care doctor, and he did an ECG and immediately sent me to a cardiologist. I stopped taking the pill and am gradually feeling better. My liver is good now, and my white blood cells... I do not like this medicine. I will be starting Copaxone."

• Sar...
• Taken for 1 to 6 months
• March 22, 2018

For Multiple Sclerosis "I have been taking Gilenya for a little under 4 months. I have been experiencing severe head rushes upon standing, migraines, tingling in my face, dizziness, and the list goes on and on, so I have decided to stop this medication. I feel worse on this med than I ever have with any MS symptom. I wish this medication would have worked for me."

• Sar...
• Taken for 1 to 6 months
• March 22, 2018

For Multiple Sclerosis "I have been taking Gilenya for a little under 4 months. I have been experiencing severe head rushes upon standing, migraines, tingling in my face, dizziness, and the list goes on and on, so I have decided to stop this medication. I feel worse on this med than I ever have with any MS symptom. I wish this medication would have worked for me."

• Ara...
• Taken for 2 to 5 years
• September 7, 2021

For Multiple Sclerosis "Was diagnosed in 2004 at age 17, started interferon a year after. Couldn't tolerate it longer than a year, then changed to another, Rebif were the only options. Same case happened, then Avonex caused vertigo. I stopped all drugs for 9 years, then Gilenya in 2019, still on it. :)) It's like a water drop, until now, it's peaceful, inshallah it lasts."

• Mas...
• Taken for 1 to 2 years
• November 16, 2018

For Multiple Sclerosis "I switched to Gilenya from being on BetaSeron for 15 years (which kept me without any disease progression). BetaSeron started to give me flu-like symptoms every time I took the shot, so I decided to switch to an oral med. For me, Gilenya was awful. I felt awful and I looked awful. When I see pictures of me, I can almost pick out the ones when I was on Gilenya. My first side effect was extreme vertigo, then on top of that, I just felt like my head was a 'brick.' I used to have to go home on my lunch hour and just lay there. Although it stopped disease progression (which was a plus), the side effects, for me, were miserable."