User Reviews for Gilenya to treat Multiple Sclerosis
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.
Reviews for Gilenya
"I would not recommend Gilenya for MS. It made me worse. I could only take it for 5 months Then hair thinning, heavy period, halted my walking"
"Been on Gilenya for nine months. I was on Avonex for many years before that, but got extremely weak and shaky and couldn't get better no matter how much rest I got. Starting was an administrative nightmare because Gilenya couldn't figure out how to have my private insurance/Medicare combo pay for it, so I was off all meds for two months and felt like utter garbage. Finally my doctor had to admit me to the hospital to get my first monitored dose. After getting steroids and months of rest, I guess I'm pretty much back at my baseline. I felt tired and got chills easily for the first several months, which faded over time. But at about eight months in I started getting all kinds of minor infections. Two very painful urinary tract infections, a sty, a plantar wart, toenail fungus, and ringworm. I know they're not serious but I find it upsetting that contagious things are growing on me."
"I would NOT recommend Gilenya to anyone. The side effects are simply atrocious. It can cause such severe fatigue ."
"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."
"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"
"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."
"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."
"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."
"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."
"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"
"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."
"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 Press.com they are charging too much for a great medication."
"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."
"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."
"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."
"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?"
"Hair loss, persistent headache"
"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."
"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."
"Stabilized my MS symptoms and make it under control But the medicine already covered by my insurance so far"
"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."
"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!"
"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!!!"
"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."
"After 5 yrs Gilenya is no longer working for me"
Learn more about Multiple Sclerosis
IBM Watson Micromedex
Symptoms and treatments
Mayo Clinic Reference
ICD-10 CM Clinical Codes (External)
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- Drug class: selective immunosuppressants
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