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User Reviews for Fingolimod systemic

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.

Condition Avg. Ratings Reviews Compare
Multiple Sclerosis
7.3
   
80 reviews 89 medications
Summary of Fingolimod reviews 7.3 80 reviews

Reviews for Fingolimod

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Gilenya (fingolimod) 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"

   
1.0

Em (taken for 1 to 6 months) November 28, 2018

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Gilenya (fingolimod) 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."

   
3.0

MasalaCha (taken for 1 to 2 years) November 16, 2018

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Gilenya (fingolimod) 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."

   
10

JulesM66 (taken for 2 to 5 years) September 15, 2018

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Gilenya (fingolimod) 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."

   
1.0

Noni (taken for less than 1 month) September 10, 2018

5 users found this comment helpful.
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Gilenya (fingolimod) 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."

   
7.0

Chris (taken for 1 to 6 months) September 2, 2018

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Gilenya (fingolimod) 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"

Terry (taken for 1 to 2 years) August 25, 2018

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Gilenya (fingolimod) 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."

   
10

My2fly (taken for 1 to 6 months) June 27, 2018

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Gilenya (fingolimod) 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 Press.com they are charging too much for a great medication."

   
10

TJ (taken for 5 to 10 years) April 11, 2018

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Gilenya (fingolimod) 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."

   
1.0

Sarahz (taken for 1 to 6 months) March 22, 2018

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Gilenya (fingolimod) 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."

   
7.0

Kpoteet (taken for 6 months to 1 year) November 2, 2017

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Gilenya (fingolimod) 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."

   
1.0

Natz61 October 18, 2017

24 users found this comment helpful.
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Gilenya (fingolimod) 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?"

   
5.0

andbro October 14, 2017

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Gilenya (fingolimod) for Multiple Sclerosis: "Hair loss, persistent headache"

   
8.0

Anonymous (taken for 1 to 6 months) October 4, 2017

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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."

   
5.0

Steffyb33 (taken for 2 to 5 years) July 10, 2017

23 users found this comment helpful.
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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."

   
10

Tony 1972 July 6, 2017

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Gilenya (fingolimod) for Multiple Sclerosis: "Stabilized my MS symptoms and make it under control But the medicine already covered by my insurance so far"

   
8.0

Ms pp July 5, 2017

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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."

   
9.0

Marty1096 June 21, 2017

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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!"

   
9.0

Slh74 June 12, 2017

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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!!!"

   
10

bre81393 (taken for 1 to 6 months) June 11, 2017

24 users found this comment helpful.
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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."

   
1.0

KJM0724 (taken for 1 to 2 years) May 23, 2017

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Gilenya (fingolimod) for Multiple Sclerosis: "After 5 yrs Gilenya is no longer working for me"

   
2.0

Tammyvette (taken for 5 to 10 years) May 5, 2017

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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."

   
4.0

Kurt Clements (taken for 5 to 10 years) May 2, 2017

28 users found this comment helpful.
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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

10 users found this comment helpful.
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Gilenya (fingolimod) for Multiple Sclerosis: "The drug lowered my blood pressure after first dose so I was not able to continue"

   
1.0

Cstokie (taken for less than 1 month) November 20, 2016

13 users found this comment helpful.
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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."

   
6.0

Ammey October 23, 2016

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