User Reviews for Fingolimod
Also known as: 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.
Learn more about Fingolimod.
|Multiple Sclerosis||67 reviews||87 medications|
|Summary of Fingolimod reviews||67 reviews||7.6|
Reviews for Fingolimod
Gilenya (fingolimod) 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."
Steffyb33 (taken for 2 to 5 years) July 10, 2017
3 users found this comment helpful.
Gilenya (fingolimod) 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."
Tony 1972 July 6, 2017
5 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "Stabilized my MS symptoms and make it under control But the medicine already covered by my insurance so far"
Ms pp July 5, 2017
0 users found this comment helpful.
Gilenya (fingolimod) 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."
Marty1096 June 21, 2017
2 users found this comment helpful.
Gilenya (fingolimod) 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!"
Slh74 June 12, 2017
1 users found this comment helpful.
Gilenya (fingolimod) 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!!!"
bre81393 (taken for 1 to 6 months) June 11, 2017
10 users found this comment helpful.
Gilenya (fingolimod) 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."
KJM0724 (taken for 1 to 2 years) May 23, 2017
10 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "After 5 yrs Gilenya is no longer working for me"
Tammyvette (taken for 5 to 10 years) May 5, 2017
7 users found this comment helpful.
Gilenya (fingolimod) 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."
Kurt Clements (taken for 5 to 10 years) May 2, 2017
15 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "Terrible stomach pains. How long does it last even when I'm off the med."
mathgimpy (taken for 6 months to 1 year) March 13, 2017
5 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "The drug lowered my blood pressure after first dose so I was not able to continue"
Cstokie (taken for less than 1 month) November 20, 2016
9 users found this comment helpful.
Gilenya (fingolimod) 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 affects and only one relapse per year. Then my hair started thining and the headaches and fatigue got really bad. Now it no longer seems to be working. Last mri showed several new lesions and my Dr 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."
Ammey October 23, 2016
23 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I have had MS awhile, DX in 2000. I have taken interferon,tecfidera and controlled. I decided to try Gilenya this summer,a month in I started getting numbness under both feet. I had never experienced anything like this before. Medicine was the only change.It got so severe both feet were completely numb. It felt like i had pads under my feet.After trying oral and iv steroids no improvement i was so frustrated and didnt know what to do. No new activity on myMRI. Because numbness can also be associated with MS this can be confusing. I had no other choice but to stop Gilenya to see if that was causing it. Funny enough after 6 days into stopping it the sensation started coming back under my feet and 70% better. Now it's almost gone!"
FallFolliage (taken for 1 to 6 months) October 22, 2016
26 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I had been on a couple of medicatios, the best of which for me was Copaxone. In fact, I had relatively few symptoms and it wasn't really visible. Then I started Gilenya because it was supposed to be so much better, and oral, to boot. I have lost so much function in terms of walking and balance in the last two years. I went back to Copaxone but am afraid that I will never regain what I lost"
Anonymous (taken for 1 to 2 years) August 29, 2016
30 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I was diagnosed with R/R MS in 1998. At that time there were limited options but my neuro had me start Betaseron (injection every other day) which was the 'strongest' med at that time. Once I learned my limitations with MS, betaseron worked well, only having a relapse once a year, that was treated with steroid infusions. After being on betaseron for almost 16 years, my injection site(s) had literally become hardened (scarred) so I had to do something else. I've been on Gilenya for almost 2 years now and have not had a relapse worth treating. I take Provigil (Modifinal sp?) daily for fatigue and Baclofen as needed for muscle spasms. I like taking a pill daily compared to injection that you have to mix every other day. No side effects for me. $ tho"
4XDADDY (taken for 1 to 2 years) January 20, 2016
49 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I had this MS since 2007, so its almost a decade now. Before I was on betaferone, and I keep on getting on & off MS side effects. Since there was no improvement on the lesions, my Dr asked me to change it with this oral pill daily.. which I was quite thrilled about as I don't need to take injection, although there's possiblity it reduce the heart rate.. Surprisingly, till today, I did not get any side effect other than headaches, and when MRI was done, there was no new lesions. So, I'm quite happy and grateful this medication works for me."
MCD-NSS January 12, 2016
32 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I took Gilenya 3 years ago for about a year and had no major side effects and only had 1 additional lesion on my brain post treatment. My husband changed jobs and it took about another year to jump through all of the hoops to restart the gilenya. I restarted the gilenya last summer. Immediately I started having trouble with more severe headaches, losing hearing, anxiety. Until my nuero took me off it. I wish It had worked"
Anonymous (taken for 1 to 6 months) November 29, 2015
29 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I have had MS for over 26 years although it was not diagnosed until 5 years ago. I was on Rebiff for 7 months and felt terrible. Went onto Tysabri infusions for 3 years and finally went onto 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 MIR (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 sifferers, even though there may be side effects."
aj58 November 3, 2015
47 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "Been on Gilenya for 3 months, I haven't seen any improvements! In fact I think I got worse! But who knows what will happen, injections/pills whatever but make it work!!"
Remiremi September 7, 2015
24 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "After about 7 years of my MS getting steadily worse with injections, my MS has now stabilized. Because of Gilenya? I believe so, even though it is not approved for secondary primary MS. It stabilized at a not so good place, but I am not feeling any worse than when I started Gilenya and MRIs prove it (no new lesions). It came out a few weeks too late for me though, because I just started to get pock marks in my skin from injection site reactions to my previous injection drugs. That Gilenya is oral was enough for me, but that it works even better than the injection drugs has me an advocate of this drug(!"
Anonymous (taken for 2 to 5 years) August 17, 2015
44 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I have been taking Gilenya for almost a year and it's improved my quality of life because the side effects have been more tolerable because they have been far less frequent. I'm not happy about my hair thinning or the risk of cardiology problems. But when weighing them against possible worsening of MS putting me in a wheelchair, it was an easy choice"
Bion August 5, 2015
37 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I was diagnosed with MS on March 28th, 2013. at that time, Gilenya was the only oral medication..however Tecfedra had just just came out. My neuro gave me the option of injections or Gilenya...really? No brainer..pill please. Novartis is amazing. First of all, in order to get on Gilenya, you have to get an EKG before your first dose, and then after as well. Then you need to be monitored in a facility for 6 hours, where they check your heart rate every however often. Gilenya has worked great for me, I have no side affects.I have symptoms of course but no issues with the drug itself. I'm so grateful to Novartis, what an amazing company"
Theresa K May 15, 2015
56 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "I was on Gilenya (Fingolimod) for 6 months, but because of raised liver function have been take off it. Like most comments I have read, I was so glad to stop injecting after 4 years (avonex) and taking a pill. I have not yet started new treatment but using regular vit d and exersise seems to be working at the moment - (reading comments about insurance cover or not - I am from UK an love the NHS) Gilenya (Fingolimod) did make me feel better and was disappointed to have to stop treatment"
danny boy 1980 April 16, 2015
29 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "How I wish this pill medicine had existed before, as I had to inject myself for many years! It is very easy to take and I did not get any side effects, although I did need to have a second ECG 6 hours after the first dose, as my blood pressure had decreased. The hospital room temperature was very low that day, but walking increased my blood pressure and the doctor released me so I could go home! Control stay in hospital was covered by Novartis. I stopped Rebif injections in 2010, with who knows which effects!"
Sylvia13 (taken for less than 1 month) March 4, 2015
28 users found this comment helpful.
Gilenya (fingolimod) for Multiple Sclerosis: "After 3 years of Rebif, I couldn't poke myself any more!! I was then on Tysabri for 2 years, until my JCV test came back positive. I am now on 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's $0 copay program, so my portion is nothing!"
aprilpixie (taken for 6 months to 1 year) January 31, 2015
59 users found this comment helpful.
More about fingolimod
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- 67 Reviews – Add your own review/rating
- Drug class: selective immunosuppressants
Other brands: Gilenya