Skip to Content

User Reviews for Gilenya

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Condition Avg. Ratings Reviews Compare
Multiple Sclerosis
80 reviews 93 medications
Summary of Gilenya reviews 7.2 80 reviews

Reviews for Gilenya

Disgusted 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 ."

Sarah · 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 Tysbari due to the JC virus. The first 6 months of Gilenya, I had on and off headaches which were more of an annoyance then 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."

Em · Taken for 1 to 6 months November 28, 2018

For Multiple Sclerosis "I was recently diagnoised 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 ok but noticed I no longer wanted to do anything, I had extreme anxiety, was short fused and began feeling faint and dizzy. Went to my primary care 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 Copaxen"

MasalaCha · 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."

JulesM66 · Taken for 2 to 5 years September 15, 2018

For Multiple Sclerosis "I have been on Gilenya for four or five years. I was initially diagnosed with MS in 2003. Before starting Gilenya, I was noticing more sensations of weakness in my ankles and wrists and also more nighttime bathroom trips. If I overdo, my legs still get tired. But overall, this drug has been amazing for me. The ankle/wrist fatigue almost never happens and bathroom trips at night were reduced. I never experienced any side effects from it - I am very thankful for this pill! It does suppress one's immune system. After vacationing in Mexico and playing too hard for a week, I did come down with shingles. My fault for being cavalier."

Noni · Taken for less than 1 month September 10, 2018

For Multiple Sclerosis "I’ve been on Gilenya for 2 weeks... awful! Exhausted beyond measure. Sinus issues. Sleep talking/walking. No desire to do anything. Notified my doctor immediately, but doesn’t think the medicine could cause these issues. Not sure what to do."

Chris · 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 cspine increased. I've been on gilenya since last week of June it was ok for first month then I became weak depressed and extreme fatigue. I'm still on it but taking every other day. Had to call out on disability again. I'm hoping the extreme fatigue and weakness leaves soon."

Terry · Taken for 1 to 2 years August 25, 2018

For Multiple Sclerosis "After taking copaxone for over 10 years I was switched to Gilenya took it for 2 years no side effects. I thought it was great no injections then my white blood cell count went to bad the lymph nodes in my neck looked like ping pong balls. My yearly MRI showed no new plaque the same for 4 years. Been taking low dose naltrexone for 4 years. They no longer prescribed Gilenya"

My2fly · Taken for 1 to 6 months June 27, 2018

For Multiple Sclerosis "All the comments I have read are old! I have been on gilenya for about 3 months and it has made me feel better. I just got a call today about my insurance company objecting to my copay card. Starting with next delivery, I have to pay copay up front and Novartis will reimburse me. My copay is $1500! I will try that and see how it goes. I obviously can not afford to foot the bill! It’s interesting that the lady that I spoke with gave me the impression that this was a new development with insurance companies. Since people have recounted the same circumstances, this does not appear to be true. It is what it is and I’ll give reimbursement a shot. I was diagnosed in 2002 and took rebif injections for 8 years. When I was forced to switch neurologists, I was UNDIAGNOSED in 2010 and just really started having issues.... thus the REDIAGNOSIS of MS! I was very happy to learn there was now a pill. I pray it goes smoothly from here on out! We’ll see."

TJ · Taken for 5 to 10 years April 11, 2018

For Multiple Sclerosis "Been on Gilenya since it was approved and have been doing great. Went to every other day because my liver levels were up but now everything is ok. I might have to stop because my insurance might stop covering Gilenya, $24,000 every three months I can understand why. Gilenya profits were 790 million in 2016 an increase of 15 % according to Medical they are charging too much for a great medication."

Sarahz · 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."

Kpoteet · Taken for 6 months to 1 year November 2, 2017

For Multiple Sclerosis "I like the convenience of it being a pill. The other medications I've taken for ME have been injections. Problems I'm having are thinning hair & hair loss."

Natz61 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/half in weight, I fall and can't hardly walk anymore. I wish I never started this drug."

andbro October 14, 2017

For Multiple Sclerosis "Have just been diagnosed with Relapsing-remitting MS have been on Gilenya since March 2017 only side effect at the moment is constant joint pain, wondering if anyone else has experience this? Is there any pain relief for the joints that actually works?"

Anonymous · Taken for 1 to 6 months October 4, 2017

For Multiple Sclerosis "Hair loss, persistent headache"

Steffyb33 · 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 stabilised, 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."

Tony 1972 July 6, 2017

For Multiple Sclerosis "Can't tell you how much better I feel! On Rebif for 4 years always sluggish and not much confidence in my ability to get around, I didn't realise that it must have been making me feel worse. Now on fingolimod for a month and ability to handle the heat has more than doubled,I sleep better and it's like a fog has cleared from my outlook. Still carrying on running a small company and looking to the future with a much more heathy attitude."

Ms pp July 5, 2017

For Multiple Sclerosis "Stabilized my MS symptoms and make it under control But the medicine already covered by my insurance so far"

Marty1096 June 21, 2017

For Multiple Sclerosis "Was on rebif over 10 years, went on Gilenya for trial. Stayed on it after trial ended. Tired, slight headache sometime. Better than taking Rebif. I will take these symptoms any day."

Slh74 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 finally go on Gilenya and so far so good. The only side affect 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!"

bre81393 · 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 sight 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. Its 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 weeks of side affects , I had severe fatigue (even more then I already had before starting) and also some irregular heartbeats but would go away quickly . Now I'm on almost my third month and am forever great full for a once a day pill.. I have not had a relapse yet and am praying it stays that way ! Side affects have now almost completely gone also!!!"

KJM0724 · Taken for 1 to 2 years May 23, 2017

For Multiple Sclerosis "I was constantly getting sick or an infection from it, leading to increased number of relapses. It gave me cystic acne from my bellybutton to my knees, a lot of nausea, and I suspect it affected my lung function, but they quit testing that side effect. I also mentally did not feel like myself somehow. I felt so much better and like myself again after coming off of it."

Tammyvette · Taken for 5 to 10 years May 5, 2017

For Multiple Sclerosis "After 5 yrs Gilenya is no longer working for me"

Kurt Clements · Taken for 5 to 10 years May 2, 2017

For Multiple Sclerosis "This is a review from the care taker 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 hrs a day. I didn't realise these changes until she was got off Gilynea July 2016, over 6 months time she is a different person. So Gilynea 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 a MS treatment again, we have high hopes for the future and looks promising so far."

mathgimpy · Taken for 6 months to 1 year March 13, 2017

For Multiple Sclerosis "Terrible stomach pains. How long does it last even when I'm off the med."

Learn more about

IBM Watson Micromedex

Symptoms and treatments

Mayo Clinic Reference

ICD-10 CM Clinical Codes (External)