User Reviews for Gilenya to treat Multiple Sclerosis
Gilenya has an average rating of 7.0 out of 10 from a total of 88 ratings for the treatment of Multiple Sclerosis. 57% of those users who reviewed Gilenya reported a positive effect, while 19% reported a negative effect.
“I am a 43 mother of 3 girls, I was diagnosed with MS 17 years ago after the birth of my first daughter. I have been taking Gilenya for 5 years now after previously been on Copoxone and Avonex. I had a relapse so was offered to changed medicine, and have not looked back since. It has been amazing for me with absolutely no side effects, I have not had any MS symptoms since. I work full time (running our own successful metalworkers company) I have a trainer and work out 5 hours a week, I am strong and fit and well. This has been the best drug for me by far!”
“I was diagnosed with RRMS in April 2020 at the age of 49. My Neurologist started me on Gilenya and it has worked wonders for me. Most of my life, I was tired easily and slept a lot and now that I’m on Gilenya, I have more energy than I ever can remember having. I was devastated when I got the news that I have MS, but I had always known something wasn’t right. I was an athlete and played basketball in college, so I didn’t live a sedentary lifestyle but I slept a lot. Unfortunately now I have trouble falling asleep but I’m not sure if it’s from the ms or the anxiety. I have dealt with depression since my twenties, but I would prefer that over anxiety any day. My boyfriend passed away in August from Covid and that’s when the anxiety and PTSD kicked in overdrive. To anyone who is considering Gilenya, I would recommend it because I’ve not had any negative side-effects and haven’t dealt with ms relapses either. Amanda”
“I have been on Gilenya now for 9 years. Last year my bloodwork started showing liver issues. I have had to undergo liver scans, bloodwork every two months and a liver biopsy. It is apparently caused by the Gileyna, however, my liver specialist seems to think the benefits of Gileyna outweigh the liver damage at this point. My neurologist called today and gave me several options of other MS meds to research and possibly consider changing to a different medicine in a few months.”
Frequently asked questions
- What are the new drugs used for multiple sclerosis (MS)?
- Gilenya vs Tecfidera. How do they compare?
- What happens when you stop taking Gilenya?
- How long does it take Gilenya to work?
- Does Gilenya suppress the immune system?
“I have done very well on Gilenya. I was very hesistant at first because I was on Tysabri for 4 years (which worked great) when they did a study and found out I had the JC virus. It took me about 6 months to decide what to do, but after going to two of the best neurologists, and both of them recommending Gilenya, I went forth with that decision. My doctor said a small relapse would be normal in the first 3-5 months since my body would still be adjusting. I have never had a relapse since being treated. I have been on it for 6 months. If you are going to do it just do it with confidence and positive thinking because if you stress about it then any medicine you try may not work to its full potential. It's hard not to but just trust in your decision.”
“Have been on Gilenya just shy of 2 years with no relapses. My last MRI showed no new lesions, no active lesions, and some lesions decreasing in size. I love this medicine in that it allows me to be in denial about my MS. Prior to starting Gilenya, I was on Copaxone for 3 years, which was less effective, and during that time I experienced 5-6 immediate post-injection reactions that were scary and exhausting. My neurologist told me that Gilenya will change the way we think about MS. I'm looking forward to long term data on Gilenya's effectiveness, and enjoying life in spite of my diagnosis. This medicine works for me.”
“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.”
“When I was found to have MS I was put on Rebif for 6 months until Gilenya became available. The side effects on Rebif were severe.I was never able to eliminate them. After only 3 weeks on Gilenya, I couldn't believe how much better I felt. Not only were there no side effects noticed, but I actually felt better than I've felt for several years. It has noticably improved my life.”
- How much does Gilenya cost?
- Does Gilenya cause hair loss?
- Where is Gilenya manufactured and by whom?
- What does Gilenya do for multiple sclerosis (MS)?
“I've been on Gilenya (Fingolimod) for 3 years through the clinical trial. I could not tolerate the other medicines and have seen so much improvement with Gilenya. If it came only in shot form I would still take it. Being a pill is a plus, but the effectiveness and minimal side effects is what I've been impressed with. ”
“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.”
“I have been on Gilenya 5 months now and am seeing benefits. My right leg has begun to have movement from the knee down and there is a reduction in the Ataxia in both my legs and arms. Walking has become noticeably more stable and overall improved.”
“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.”
“I started my first dose of Gilenya yesterday. The 6 hours of monitoring were event free. It was just boring because blood pressure and pulse were checked every 15 minutes for 3 hrs then every 30 minutes. I took my 2nd pill this morning and plan on having a 'normal' day. Who knows what will be happening the future. All I know is, NO MORE INJECTIONS! I was on BetaSeron for 5 1/2 years and the shots just got to be too much. Site reactions wherever I injected so enough is enough. It was a hassle swishing to Gilenya because of insurance declining it at first, etc. Best thing I can say is keep fighting because the outcome, of no injections, is worth it. Also, don't spend too much time worrying about side effects.”
“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.”
“I have been on Gilenya for 5 months now. No side effects. Great deal of relief from leg weakness and fatigue. Numbness is greatly lessened but not eliminated. No relapses so far. I'm extremely happy with this medicine. Only down side for me is the cost.”
“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”
“Started Gilenya 4 days ago and so far I am very hopeful. My blood pressure is all over the place but based on others experiences I am hopeful this will level out with time. On day 3 I noticed significantly more energy which is one of my main issues. Excited that a non-injectable offers so much promise.”
“I have been on Gilenya for 4 months now. The first two weeks I was tired, blood pressure was running low and I felt lethargic all the time. But starting week 3, I was back to normal. I have had zero issues, and no side effects. Its so easy to just take a pill a day and not think about it. I love the convenience of it all. I recently had an MRI after completing 3 months on it - no new lesions. I guess it is too early to say if it is working, but it sure 'feels' like it is.”
“I've been on Gilenya for 5 months. People posting on blogs seem very concerned about the initial drop in heart rate. Mine dropped from 86 to 66 within a few hours and then went back to normal. They said that if it falls below 55 you just have to get up and walk around until it goes back up, so it's not as big a deal. I have had no other side effects and am thankful that I was diagnosed after there was a pill as a treatment option.”
“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!”
“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”
“I started this medication 3 weeks ago. I absolutely love it. I have just a little bit of nausea and that's it. Taking Gilenya with food seems to help the nausea. So far so good! I really hope it stays that way!”
“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.”
“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.”
“I have Multiple Sclerosis, and work for my neurologist. I have been on Gilenya for 6 months I am so thankful for a pill rather an injection. I have had no side effects, that I can say for sure, I have had dizziness, and nausea prior to the change in medicine. I am unsure if everyone on these disease modifying medications is aware that they do not "cure" or get rid of MS symptoms you already have. These medications are to put the MS in a remissive state.”
“I have been taking this medicine for 4 weeks now and my weight keeps going up - 15 pounds in the last three weeks - also I feel dizzy from out of the blue. Watching T.V - folding laundry - eating lunch - sitting standing or lying... its all the same. ”
“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.”
“Nine months on Gileyna. 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!”
“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.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
Learn more about Multiple Sclerosis
IBM Watson Micromedex
Symptoms and treatments
Drugs.com Health Center
Mayo Clinic Reference
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