Gilenya for Multiple Sclerosis User Reviews (Page 2)

• BicStic
• Taken for 6 months to 1 year
• April 10, 2013

"Nine months on Gilenya. I am thrilled that I do not have to take a daily Copaxone injection. No side effects, no relapse, no indication that it does anything. I guess that means it is doing its job. All of the DMDs are expensive!"

• 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 an MS attack after each surgery. I believe the attacks were brought on by such trauma to my body. I am still taking Gilenya and have had no side effects 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 Rebif for 7 months and felt terrible. Went on to Tysabri infusions for 3 years and finally went on to 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 MRI (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 sufferers, 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 of 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 the doctor 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 medications, 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 MRIs 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 week's 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 a 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
• 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 I'm not 100% sure it's the medicine or just the MS. I am thrilled to get to take this so far, especially because it's a pill and not a shot."

• Anonymous
• November 21, 2011

"I 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."

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

"I have had MS awhile, diagnosed 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 didn't know what to do. No new activity on my MRI. 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

"I have been on this for six weeks now. No major side effects except some dizziness. I wonder if this is worth worrying about. But the ease of the pill is what makes it so attractive. I 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."

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

"I was in a clinical trial and continued on Gilenya for 5 years after. Overall, awesome medicine regarding the management of my multiple sclerosis progression based on MRI of the brain. Symptoms did worsen over time as it is not a cure, and well, progression happens. Made a decision with my neuro to switch to another treatment (Aubagio) due to lesions showing on the spine and a black hole showing on the 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!"

• MCD-NSS
• January 12, 2016

"I had this MS since 2007, so it's almost a decade now. Before I was on Betaseron, and I kept on getting on and off MS side effects. Since there was no improvement on the lesions, my doctor asked me to change it to this oral pill daily, which I was quite thrilled about as I don't need to take injections, although there's a possibility it reduces the heart rate. Surprisingly, until today, I did not get any side effects other than headaches, and when an MRI was done, there were no new lesions. So, I'm quite happy and grateful this medication works for me."

• 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, as 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 the possible worsening of MS putting me in a wheelchair, it was an easy choice."

• 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 sites were painful, red, irritation, and left holes in my skin. A pill was what I prayed for, and it's worked for me. The downside, it's costly, and I have asked for help with copay, which Gilenya did not provide, but Chronic Health Funding did. It's 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."

• 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 effects and only one relapse per year. Then my hair started thinning and the headaches and fatigue got really bad. Now it no longer seems to be working. Last MRI showed several new lesions, and my doctor 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."

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

"Gilenya worked wonders for me the first 18 months. I felt great, MS stabilized. 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 site 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. It's 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 of weeks of side effects, I had severe fatigue (even more than I already had before starting) and also some irregular heartbeats, but they would go away quickly. Now I'm on almost my third month and am forever grateful for a once-a-day pill. I have not had a relapse yet and am praying it stays that way! Side effects 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 neuro 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 caretaker 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 hours a day. I didn't realize these changes until she got off Gilenya in July 2016. Over 6 months' time, she is a different person. So Gilenya 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 an MS treatment again. We have high hopes for the future and it looks promising so far."

• danny...
• April 16, 2015

"I was on Gilenya (Fingolimod) for 6 months, but because of raised liver function, have been taken 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 a new treatment, but using regular vitamin D and exercise seems to be working at the moment - (reading comments about insurance cover or not - I am from the UK and love the NHS). Gilenya (Fingolimod) did make me feel better and was disappointed to have to stop treatment."