Gilenya for Multiple Sclerosis User Reviews (Page 3)

• Jeffery
• September 13, 2019

"Was on Gilenya for 2 years.. yes my MS was stable and I did like not having any needles in my skin for once but it got to a point where I couldn’t kick infections. My side effects were I had a skin infection that lasted the whole time I was on Gilenya. It got so bad that general practitioners thought the reason it’s getting so bad was because something was affecting my immune system like HIV which I don’t have by the way. But when they said that it clicked...the cause was Gilenya! I came off of it against doctors advice and 2 years of problems cleared up in about a month give or take. It’s not worth the side effects. I’ve been left with major scarring now from the skin infection. If only my neurologist listened to me when I first had my suspicions that Gilenya was worsening/helping to spread/prolonging the infection I’m sure my scarring would of been kept to a minimal"

• Lil...
• Taken for less than 1 month
• March 6, 2013

"Have been on the meds for 5 days now it has made me feel tired, dizzy and I have a pain in the heart area, this is nothing to do with the heart as I have had another few ECGs to check this pain. They don't think it's related but its strange that I have only started this medication and this happens. But will be sticking with it."

• KJM
• Taken for 1 to 2 years
• May 23, 2017

"I was constantly getting sick or an infection from it, leading to increased number of relapses. It gave me cystic acne from my bellybutton to my knees, a lot of nausea, and I suspect it affected my lung function, but they quit testing that side effect. I also mentally did not feel like myself somehow. I felt so much better and like myself again after coming off of it."

• Sylvia
• Taken for less than 1 month
• March 4, 2015

"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!"

• Tony...
• July 6, 2017

"Can't tell you how much better I feel! On Rebif for 4 years always sluggish and not much confidence in my ability to get around, I didn't realise that it must have been making me feel worse. Now on fingolimod for a month and ability to handle the heat has more than doubled,I sleep better and it's like a fog has cleared from my outlook. Still carrying on running a small company and looking to the future with a much more heathy attitude."

• Noni
• Taken for less than 1 month
• September 10, 2018

"I’ve been on Gilenya for 2 weeks... awful! Exhausted beyond measure. Sinus issues. Sleep talking/walking. No desire to do anything. Notified my doctor immediately, but doesn’t think the medicine could cause these issues. Not sure what to do."

• JulesM
• Taken for 2 to 5 years
• September 15, 2018

"I have been on Gilenya for four or five years. I was initially diagnosed with MS in 2003. Before starting Gilenya, I was noticing more sensations of weakness in my ankles and wrists and also more nighttime bathroom trips. If I overdo, my legs still get tired. But overall, this drug has been amazing for me. The ankle/wrist fatigue almost never happens and bathroom trips at night were reduced. I never experienced any side effects from it - I am very thankful for this pill! It does suppress one's immune system. After vacationing in Mexico and playing too hard for a week, I did come down with shingles. My fault for being cavalier."

• Chris
• Taken for 1 to 6 months
• September 2, 2018

"I was on Copaxone for close to 4 years. MS since the late 1980s. I liked Copaxone but the radiologist said 2 lesions in my cspine increased. I've been on gilenya since last week of June it was ok for first month then I became weak depressed and extreme fatigue. I'm still on it but taking every other day. Had to call out on disability again. I'm hoping the extreme fatigue and weakness leaves soon."

• andbro
• October 14, 2017

"Have just been diagnosed with Relapsing-remitting MS have been on Gilenya since March 2017 only side effect at the moment is constant joint pain, wondering if anyone else has experience this? Is there any pain relief for the joints that actually works?"

• Ashley
• Taken for 1 to 6 months
• September 7, 2019

"I was diagnosed with MS in February 2019. My first neurologist recommended Avonex but after I read the side effects I said no. Went to a MS Specialist and decided to try Gilenya. Was cleared to take the meds, did the 6 hour observation & everything was fine. Few weeks later, I noticed I was getting extreme anxiety while doing things I normally do on a daily basis like driving to run errands, see family etc. I was even having anxiety walking to my car in my building parking garage & while being at my office. I stopped taking the meds two weeks ago & I’m praying that I get back to normal. Any recommendations for other meds would be greatly appreciated. Don’t waste your time on gilenya because it could literally make you crazy."

• Slh
• June 12, 2017

"I was diagnosed with MS in 2013 at age 39 doctors said I've had it quite some time with the amount of old lesions on my brain. I started on Rebif and it made me feel horrible, so then I took Tecfidera which ended up giving me major joint pain to the point of not being able to function at times. So I was able finally go on Gilenya and so far so good. The only side affect so far is extreme fatigue which we all know we already have plenty of that with MS. Gilenya allows me to function "normal " again and play with my daughter. Hopefully it will continue to work for me and keep away any new episodes!"

• Rushall
• Taken for 5 to 10 years
• January 2, 2021

"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!"

• Amanda
• December 26, 2020

"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."

• Emano
• Taken for 1 to 6 months
• November 28, 2018

"I was recently diagnoised with MS and my doctor put me on Gilenya. I did not feel comfortable with all the testing that had to be done prior to beginning the treatment. At first things were ok but noticed I no longer wanted to do anything, I had extreme anxiety, was short fused and began feeling faint and dizzy. Went to my primary care and he did an ECG and immediately sent me to a cardiologist. I stopped taking the pill and am gradually feeling better. My liver is good now and my white blood cells. I do not like this medicine. I will be starting Copaxen"

• TJano
• Taken for 5 to 10 years
• April 11, 2018

"Been on Gilenya since it was approved and have been doing great. Went to every other day because my liver levels were up but now everything is ok. I might have to stop because my insurance might stop covering Gilenya, $24,000 every three months I can understand why. Gilenya profits were 790 million in 2016 an increase of 15 % according to Medical Press.com they are charging too much for a great medication."

• Sarahz
• Taken for 1 to 6 months
• March 22, 2018

"I have been taking Gilenya for a little under 4 months I have been experiencing severe head rushes upon standing, migraines, tingling in my face, dizziness and the list goes on and on so I have decided to stop this medication. I feel worse on this med than I ever have with any MS symptom. I wish this medication would have worked for me."

• KTano
• Taken for 6 months to 1 year
• July 26, 2019

"Been on Gilenya for nine months. I was on Avonex for many years before that, but got extremely weak and shaky and couldn't get better no matter how much rest I got. Starting was an administrative nightmare because Gilenya couldn't figure out how to have my private insurance/Medicare combo pay for it, so I was off all meds for two months and felt like utter garbage. Finally my doctor had to admit me to the hospital to get my first monitored dose. After getting steroids and months of rest, I guess I'm pretty much back at my baseline. I felt tired and got chills easily for the first several months, which faded over time. But at about eight months in I started getting all kinds of minor infections. Two very painful urinary tract infections, a sty, a plantar wart, toenail fungus, and ringworm. I know they're not serious but I find it upsetting that contagious things are growing on me."

• Terry
• Taken for 1 to 2 years
• August 25, 2018

"After taking copaxone for over 10 years I was switched to Gilenya took it for 2 years no side effects. I thought it was great no injections then my white blood cell count went to bad the lymph nodes in my neck looked like ping pong balls. My yearly MRI showed no new plaque the same for 4 years. Been taking low dose naltrexone for 4 years. They no longer prescribed Gilenya"

• Texas...
• Taken for 5 to 10 years
• September 16, 2020

"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."

• Palo
• Taken for 5 to 10 years
• July 29, 2020

"I am using gilenya since 10 years back for my Multiple Sclerosis , its easy to take, and working well with me without serious symptoms or side effect except tiredness and sleeping disturbances. I don't know for how long I will continue taking it, I guess until the insurance stop covering Gilenya cost. I am strongly holding my job since 8 years because of insurance coveraging the medication expenses. Excellent results but very expensive."

• Masal...
• Taken for 1 to 2 years
• November 16, 2018

"I switched to Gilenya from being on BetaSeron for 15 years (Which kept me without any disease progression). BetaSeron started to give me flu like symptoms every time I took the shot, so I decided to switch to an oral med. For me, Gilenya was awful. I felt awful and I looked awful. When I see pictures of me, I can almost pick out the ones when I was on Gilenya. My first side effect was extreme vertigo, then on top of that, I just felt like my head was a "brick". I used to have to go home on my lunch hour and just lay there. Although it stopped disease progression (which was a plus), the side effects, for me, were miserable."

• My2fly
• Taken for 1 to 6 months
• June 27, 2018

"All the comments I have read are old! I have been on gilenya for about 3 months and it has made me feel better. I just got a call today about my insurance company objecting to my copay card. Starting with next delivery, I have to pay copay up front and Novartis will reimburse me. My copay is $1500! I will try that and see how it goes. I obviously can not afford to foot the bill! It’s interesting that the lady that I spoke with gave me the impression that this was a new development with insurance companies. Since people have recounted the same circumstances, this does not appear to be true. It is what it is and I’ll give reimbursement a shot. I was diagnosed in 2002 and took rebif injections for 8 years. When I was forced to switch neurologists, I was UNDIAGNOSED in 2010 and just really started having issues.... thus the REDIAGNOSIS of MS! I was very happy to learn there was now a pill. I pray it goes smoothly from here on out! We’ll see."

• Par
• Taken for 10 years or more
• January 18, 2024

"I've been on Gilenya since 2010, and it's really beneficial for my health. I started on Avonex, then Rebif, Betaseron, and Copaxone. None of which helped, in fact, worsened my MS. This, of course, doesn't discount their effectiveness for you, but certainly wasn't for me. I had a relapse and a 16mm lesion on my brainstem, and my neuro (MS Specialist) mentioned Gilenya and one other. I chose Gilenya. I'm very proactive with my MS. Now I will be on Generic Fingolimod by Mylan, now Viatris. More to follow."

• Arab
• Taken for 2 to 5 years
• September 7, 2021

"Was diagnosed on 2004 age 17 started interferon a year after. Couldn't tolerated longer than a year then changed it to another, rebef were only options same case happen then Avonex caused vertigo. I stopped all drugs 9 years then gilenya 2019 still on it :)) its like water drop until now its peaceful inshallah it lasts"

• MCF
• February 2, 2024

"Diagnosed in 2001. Used Avonex for 10 years. I hate needles! And hate weekly flu-like symptoms! My doctor predicted that I would be in a wheelchair in a year. Immediately, I changed my diet to fresh fruits and fresh veggies. Gradually returned to a normal diet. Also immediately prayed for healing. And must have a positive outlook/attitude. I had two relapses in the first ten years, each time affecting my sight. Thank God for the daily pill medicine, Gilenya. I started Gilenya in 2011 and have not had a relapse since, and it is February 2024! My MRIs come back looking better each time. And thank God I don't have the flu symptoms every week from my medicine. Everyone may not have the same result, but my experience has been fantastic. And thankfully, I haven't been in a wheelchair EVER for MS."