User Reviews for Gilenya
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published.
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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.”
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.”
For Multiple Sclerosis: “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.”
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.”
For Multiple Sclerosis: “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.”
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.”
Frequently asked questions
- Gilenya and the covid-19 vaccine, what should I know?
- Can Gilenya cause weight gain?
- Can Gilenya cause high blood pressure?
- Can Gilenya cause headaches?
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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. ”
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.”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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!”
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”
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.”
- 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 much does Gilenya cost?
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.”
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!”
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”
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.”
For Multiple Sclerosis: “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. ”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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!”
For Multiple Sclerosis: “I have been on Gilenya for 6 weeks with no side effects and thought it was wonderful. Until, the other day I had aches and pains progressively getting worse throughout the day. The next day I was in bed with a severe headache, body aches, and my lips were swollen. I have noticed spots on my lower legs, like mosquito bites, which do not itch at all, but feel like an intense bruise when touched. My GP gave me Prednisone and told me to call my neurologist and stop the Gilenya. I made my appointment today.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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