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.
Learn more about Gilenya.
|Multiple Sclerosis||54 reviews||87 medications|
|Summary of Gilenya reviews||54 reviews||7.9|
Reviews for Gilenya
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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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For Multiple Sclerosis "I've had Multiple Sclerosis since 1989, was on Copaxone for 11 years and have been on Gilenya for 2 years. Both worked fine in stopping episodes but injection sides were painful, red, irritation and left holes in my skin. A pill was what I prayed for and its worked for me. The down side its costly and I have asked for help with co pay which Gilenya did not provide but Chronic Health Funding did. is helping a little. The thing I worry about is since I started Gilenya I've gotten lots of colds ending up in asthma attacks, at least twice a year. When I questioned my Neuro he said he didn't think they had any connection. "
Lili Pena January 10, 2015
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For Multiple Sclerosis "I was in clinical trial and continued on Gilenya for 5 years after. Overall awesome medicine regarding management of my multiple sclerosis progression based on MRI of brain. Symptoms did worsen over time as it is not a cure and well progression happens. Made decision with Neuro to switch to another treatment (Aubagio) due to lesions showing on spine and a black hole showing on brain MRI - never had side effects to mention except maybe additional tiredness after dosing, switched to nights for 3 months but then went back to mornings. Blood pressure ran low from an hour till about 3 hours following dosage but never to a point of dizzy or passing out. Was usually 50/70 to 60/80 which freaked out nurses but my BP was always around 80-82. I recommend it!"
Day11 (taken for 5 to 10 years) November 14, 2014
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For Multiple Sclerosis "Been on Gilenya 15 months. So far so good. Last MRI of brain showed no new lesions and several existing ones shrank a little. Wish there was more upbeat news to report, but I am pleased with the status quo."
Jim Ft Lauderdale (taken for 1 to 2 years) August 1, 2014
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For Multiple Sclerosis "I have been on Gilenya for a year now and I am very happy with it. I can now do things I could not do while on Copaxone or Avonex. One issue I have found while on Gilenya is I get dizzy spells often, but other than that I am happy. For those of you that say it's costly call your Gilenya rep and get them to pay your co-pay it helps. Check with your doctor about taking more Vitamin-D and Vitamin-C, this will help with colds etc."
Docack (taken for 1 to 2 years) May 30, 2014
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For Multiple Sclerosis "Started using Gilenya and felt better after a weeks time. However, I constantly felt dehydrated and my skin looked dried out even with consuming much water. I was urinating a dark color and after taking blood test a month into treatment my liver levels were high. I continued treatments for another month and a half but my liver levels continued to increase so I stopped my prescription. I will say I was feeling better with less mood swings and my spirits felt lifted and the lesions were reduced and minimal."
Bgolfin (taken for 1 to 6 months) April 29, 2014
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For Multiple Sclerosis "I started Gilenya in early 2011 as I had a severe relapse. Beforehand I was on Copaxone but it wasn't very effective and left itchy sore red marks. Gilenya has been very effective as in my lesions have stabilised and have shrunk a little. The downside for me is that if you get an infection or a wound, it takes a long time to heal. You have to keep an eye on it and maintain it if it happens to you as it might get worse. I suffer lightheadedness when standing up and nausea as well. You are more susceptible to colds and flu as well so make sure you ask your doctor for a flu shot every year. The side effects are tolerable. I have NOT had a relapse since and given there isn't a cure for Multiple Sclerosis, this is the best medicine available in Australia."
aussie_em (taken for 2 to 5 years) April 18, 2014
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For Multiple Sclerosis "I've been on Gilenya for quite some time now. At first, I had no side effects at all. Lately, however, I've been getting random symptoms and not sure if they're directly related. My hair has gotten thinner, my eye's sensitivity to light is a bit off, I've gotten gingivitis and been getting mouth ulcers a lot. I'm getting a bit worried, but so far haven't had an attack since I started taking the medicine."
Ellezy December 16, 2013
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For Multiple Sclerosis "I have been on Gilenya for a little over a year. This is a wonderful medicine for me. I started the medication after my second exacerbation in less than 7 months. I have not had any more relapses in the past year. I have enjoyed my life with little to no interferences from my Multiple Sclerosis. I just wanted to share, yes it is expensive but it is worth it. Who knows what the future holds for any of us but I know with Gilenya currently being my medicine of choice I do not dread the future I am embracing what is to come. Thank you to Novartis."
BluDee (taken for 1 to 2 years) November 28, 2013
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For Multiple Sclerosis "I have been taking Gilenya for close to 10 months now. I was on Rebif and suffered horrible side effects that never did go away ( flu symptoms, migraines ). I had a very severe relapse where I lost the ability to walk for months. I started the new pill medication and have had no side effects whatsoever. What a relief! I can't tell if it's working, I guess time will tell and if I ever relapse again. It's a very expensive medication, thankful my extended benefits cover it. I would recommend this if Tysabri is not for you ( JC Virus positive ). A few laughs in light of a serious health problem...I am a mad cow! lol. And those of you who are JC positive - you will know what I mean."
Anonymous (taken for 6 months to 1 year) November 6, 2013
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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."
NikkiBre August 18, 2013
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