Gilenya for Multiple Sclerosis User Reviews (Page 2)

• twotrip
• Taken for 1 to 2 years
• May 30, 2013

"I was on Rebif and it worked well for me. Ten years later I started having Multiple Sclerosis attacks about every 3 months. It was like my body had built up a tolerance for Rebif, so I started on Gilenya. In fact I would have rated it a ten. I unfortunately broke my foot and ankle. I ended up needing two surgeries. I had a MS attack after each surgery. I believe the attacks were brought on by such a trauma to my body. I am still taking Gilenya and have had no side affects or another attack."

• aj58
• November 3, 2015

"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."

• Gracie
• April 13, 2012

"I have been on Gilenya for 5 weeks with minimal side effects. Had some nausea the first 5 days and took meclizine over the counter and it quickly resolved. Due to the MS I was dizzy and felt like I was pitching forward when driving and going down steps. I am not nearly as dizzy and the feeling of falling forward is much less. I hated the Copaxone injections which began making dents in my thighs not to mention the pain, itching and swelling at the injection site."

• My o my
• May 13, 2013

"Very easy to take a pill form medicine vs injection. I experienced very low white blood cells with terrible headaches, body aches, tiredness and nausea after taking the medicine for 4 months. I am slowly feeling better after just two weeks without any medication; I have an appointment with Dr. next week."

• Anonymous
• Taken for 2 to 5 years
• August 17, 2015

"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 1 to 2 years
• August 29, 2016

"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"

• KKKI
• May 27, 2013

"I am 41 years old and have been recently told that I have Multiple Sclerosis. I had 3 MRI's that confirmed it. My symptoms include tingling in my feet and right hand. I am a runner and love to exercise. Getting ready to start taking Gilenya and am feeling very nervous about it."

• Bgolfin
• Taken for 1 to 6 months
• April 29, 2014

"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."

• Anonymous
• November 21, 2011

"Have been taking this for almost 9 months as other injections failed to work for me. It started out good but a few months into using it I developed severe night sweats. I am coping with it for now as the side effects from other multiple sclerosis medicines were much worse."

• Anonymous
• October 23, 2011

"I have been on Gilenya since February of this year. So far it is great. Some days my body pain is a bit more but not 100% sure its the medicine or just the MS. I am thrilled to get to take this so far..especially because its a pill and not a shot."

• FallF...
• Taken for 1 to 6 months
• October 22, 2016

"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!"

• leo
• March 6, 2011

"Have been on this for the six weeks now. No major side effects except some dizziness. Wonder if this is worth worrying about. But the ease of the pill is what makes it so attractive. Wonder how long before I see real improvements."

• Just2...
• Taken for less than 1 month
• May 2, 2013

"I just started Gilenya through a research study (or I couldn't afford it) a week ago. I had minor flu like symptoms the first 72 hours and then increased energy the past several days. I have experienced hot flashes at night sometimes. I have never been on any meds since being tested for Multiple Sclerosis in 2005. I am thankful I don't have to take the injections. Tired and oddly depressed today. Hoping that goes away soon and isn't a lasting side effect."

• MCD-NSS
• January 12, 2016

"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."

• Day
• Taken for 5 to 10 years
• November 14, 2014

"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!"

• Bion
• August 5, 2015

"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"

• Ammey
• October 23, 2016

"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."

• Lili...
• January 10, 2015

"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. "

• Steffyb
• Taken for 2 to 5 years
• July 10, 2017

"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."

• Anonymous
• Taken for 6 months to 1 year
• November 6, 2013

"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."

• bre
• Taken for 1 to 6 months
• June 11, 2017

"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!!!"

• Anonymous
• Taken for 1 to 6 months
• November 29, 2015

"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"

• Kurt...
• Taken for 5 to 10 years
• May 2, 2017

"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."

• Sarah
• Taken for 2 to 5 years
• February 26, 2019

"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."

• danny...
• April 16, 2015

"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"