Gilenya and Fatigue: What Users Say

• Nik...
• August 18, 2013

For Multiple Sclerosis "I haven't even been on Gilenya for a full week and am already seeing positive results. The first few days I did feel sluggish and had some stomach discomfort (gas, cramping, etc.), but neither was severe or lengthy. What I am most impressed by, so far, is the immediate improvement in muscle spasticity, which has helped me sleep more fitfully than I have slept in years. I have also experienced the return of tastes and sensations I wasn't even fully aware of losing and an alleviation of what I call brain pain. I am excited to see the vast improvement to my health, and I look forward to all that I will accomplish with the freedom it brings."

• Lin...
• July 22, 2011

For Multiple Sclerosis "I have been on Gilenya for 5 months now. No side effects. Great deal of relief from leg weakness and fatigue. Numbness is greatly lessened but not eliminated. No relapses so far. I'm extremely happy with this medicine. Only downside for me is the cost."

• apr...
• Taken for 6 months to 1 year
• January 31, 2015

For Multiple Sclerosis "After 3 years of Rebif, I couldn't poke myself anymore! I was then on Tysabri for 2 years until my JCV test came back positive. I am now in my 11th month of Gilenya and LOVE it. My only real symptom is fatigue. I have had a few more headaches than usual and a very low WBC count, but otherwise no other side effects. Have always been a yoga-loving vegetarian. Am on Novartis' $0 copay program, so my portion is nothing!"

• Nat...
• October 18, 2017

For Multiple Sclerosis "Today I've chosen to completely stop this med. On paper, it's working, no new scars on either spine or brain, but I've completely lost my personality, interests, myself, and my life! Before taking, I could walk without falling over my ankles. I used to be able to get up in the morning, I used to get dressed and take care in my appearance. I used to get by without any naps, I used to be able to clean my house. I used to see the funny side, and now I've completely changed as a person. I cry all the time, I'm so angry. I lose my cool over stupid stuff, I look like crap because I have no energy. I've gone over a stone and a half in weight, I fall and can't hardly walk anymore. I wish I never started this drug."

• aj5...
• November 3, 2015

For Multiple Sclerosis "I have had MS for over 26 years, although it was not diagnosed until 5 years ago. I was on Rebif for 7 months and felt terrible. Went on to Tysabri infusions for 3 years and finally went on to Gilenya. Tysabri was so much better than the horror of injecting myself, which made me feel as if I had a severe flu or similar. But I used to experience a pain around my right 'love handle,' which would stop me in my tracks. It wasn't until I went on Gilenya that this crippling pain stopped - what a relief. My last MRI (every 6 months) showed no differences, nor do I feel different. The fatigue and lack of strength still affects me, but life could be a lot worse. I would recommend Gilenya to all MS sufferers, even though there may be side effects."

• Amm...
• October 23, 2016

For Multiple Sclerosis "I have been taking Gilenya for the past six years. It has been the only medicine I have been on for MS. I thought it was a great option for the first few years with very few side effects and only one relapse per year. Then my hair started thinning and the headaches and fatigue got really bad. Now it no longer seems to be working. Last MRI showed several new lesions, and my doctor said the drug is doing little to nothing for me. He wants me to switch to Tysabri, but hearing the risks for that terrifies me."

• 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."

• bre...
• Taken for 1 to 6 months
• June 11, 2017

For Multiple Sclerosis "I was on Capoxone shots for two months and was miserable with the site reactions and itching everywhere. My doctor wanted me to stop and start Gilenya. I was hesitant at first, but now I'm so happy I chose to do so. It's scary to begin with, seeing all the testing needing to be done and precautions, but after you get through it all and the first couple of weeks of side effects, I had severe fatigue (even more than I already had before starting) and also some irregular heartbeats, but they would go away quickly. Now I'm on almost my third month and am forever grateful for a once-a-day pill. I have not had a relapse yet and am praying it stays that way! Side effects have now almost completely gone also!!!"

• Kur...
• Taken for 5 to 10 years
• May 2, 2017

For Multiple Sclerosis "This is a review from the caretaker side. My wife, Lori, had been diagnosed with MS since 1996. She had been on Betaseron till 2011 when she switched to Gilenya. Over time, she experienced hearing, vision, memory loss, and extreme fatigue, which all got worse. She was sleeping 16 to 18 hours a day. I didn't realize these changes until she got off Gilenya in July 2016. Over 6 months' time, she is a different person. So Gilenya worked, but it changes a person over time, in my case for the worse. She just took her first set of Lemtrada infusion, and in 1 year, she will do her last set, and will not need an MS treatment again. We have high hopes for the future and it looks promising so far."

• Sar...
• Taken for 2 to 5 years
• February 26, 2019

For Multiple Sclerosis "I have been on Gilenya for about 3 years. I suffer from aggressive RRMS and was not a candidate for Tysabri due to the JC virus. The first 6 months of Gilenya, I had on and off headaches, which were more of an annoyance than extremely painful. Testing to be put on the drug can be intimidating and scary, the benefits outweigh the risks, though. I do find you are quite tired when you add Gilenya into the mix, I guess nothing is perfect. I did have a tiny lesion (small flare) show up when I first started Gilenya, the MRI was done within 6 months of starting the medication, so I'm assuming my body took some time to become accustomed to it. I haven't had any progression show up since and have been lesion-free the past two years of using it!!! Meds seem to be doing their job, just wish I didn't have the fatigue tacked onto my MS fatigue."

• Chr...
• Taken for 1 to 6 months
• September 2, 2018

For Multiple Sclerosis "I was on Copaxone for close to 4 years. MS since the late 1980s. I liked Copaxone, but the radiologist said 2 lesions in my c-spine increased. I've been on Gilenya since the last week of June. It was okay for the first month, then I became weak, depressed, and extremely fatigued. I'm still on it but taking it every other day. Had to call out on disability again. I'm hoping the extreme fatigue and weakness leave soon."

• Slh...
• June 12, 2017

For Multiple Sclerosis "I was diagnosed with MS in 2013 at age 39. Doctors said I've had it quite some time with the amount of old lesions on my brain. I started on Rebif, and it made me feel horrible, so then I took Tecfidera, which ended up giving me major joint pain to the point of not being able to function at times. So I was able to finally go on Gilenya, and so far, so good. The only side effect so far is extreme fatigue, which we all know we already have plenty of that with MS. Gilenya allows me to function 'normal' again and play with my daughter. Hopefully, it will continue to work for me and keep away any new episodes!"

• Dis...
• March 9, 2019

For Multiple Sclerosis "I would NOT recommend Gilenya to anyone. The side effects are simply atrocious. It can cause such severe fatigue."