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I have relapsing/remitting MS and I have been on Gilenya for almost a month now. The required 6 hour doctor visit for your first dose was actually not that bad. There were a few of us and Novartis provided breakfast and lunch. I had no side affects during that time, however, on the drive home I started getting tunnel vision and feeling faint. I had to pull over a couple of times. So from that ...
Although I’d did miracles within a few days in harming my mobility, my lymphocytes dropped to.2 and now, even after being off the drug for years my total wbc hover around 1.6. I just had a bone marrow biopsy and they highly suspect lymphoma possibly caused by the use of gileyna. I also had hair loss and severe memory loss on drug have developed masses on my thyroid. Although at the time I started, I knew these risks and would do most anything to retain mobility, I wish I would have researched other Ms drug optionsRead More Read Less
I am Diagnosed last year and have tried Tecfidera where I experienced serious side effects (redness all over body , cold patches) . My doctor changed me to Gileynia and so far it’s been few months and numbness from legs and arms have gone away. Weight have increased though which I am maintaining by gym (very hard to maintain however still trying one day at a time)
Gilenya is awesome but don't misplace it. Or accidentally throw away due to light bottle. I have been with Kaiser formerly known as Group Health for over 40 years. For the first time ever I have misplaced my Multiple Sclerosis Medication. I called them and they said I needed to complete a police report for lost medication. I did that. They then informed me I would be responsible for the cost since Kaiser insurance does not cover lost or stolen medicine. They said they cost would be over $9K! I can't afford that. The caveat is if I go off the medicine for 14 days I then need to be monitored for six hours upon my first dose again. The pharmaceutical said they would send me an emergency dose out for free once I got the prescription from my pharmacy. Kaiser said they will not do that because then it voids my existing prescription. Mind you, I was diagnosed in 2002 and this is the first time I have EVER "lost" my medicine. I think I may have thrown it out on accident. With MS, it's easy to be "spacey" when tired. The bottle also was extremely light. I am livid. I know run the risk of having an MS exasterbation, not being able to care for kids and work. I have to wait over two weeks to refill. This has proven Kaiser does not care about their patients. I have always stood up for Kaiser but I will never recommend them to anyone after this.Read More Read Less
I was diagnosed back in 2010 with relapsing MS. My neurologist asked if I was willing to try a new product that came out as I was his first patient to agree. I remember being observed for over 12 hours that day. The side effects I've experienced over the years are migraines & hair loss. It has helped me greatly so that I only have 1 flare up a year. Since also taking vitamin D3 everyday, I went two years without a flare up. The one bad thing to do is to stop taking it and then go back because that is when I started having the migraines and hair loss. Read More Read Less
I was in the investigational drug study for gilenya. Got on this treatment after presenting with my second lesion. Now 12 yrs later,0 new lesions, and the only side effects have been slightly elevated liver enzymes and a six month increase in cold sores in the very beginning. This has been a wonder drug for me.
I have been taking vitamin B12, D3, and cinnamon for years. I went longer on that regimen without an attack, but here I am, Iâ??ve had an attack and I need to go on something so Gilenya is my neurologistâ??s answer. Iâ??m only on week 2, but Iâ??m exhausted, irritable and feeling depressed. My energy is everything to me. Itâ??s my good mood, my ability to get things done, to keep things going as a working mom, but itâ??s gone. Itâ??s really disheartening that I may be trading my energy for fewer attacks.Read More Read Less
i have been taking Gilenya for 6 months. Had no side effects. Love not taking rebif shot anymore.
I have SPMS. I was taking Copaxone; told it wasn't working anymore - I should take Gilenya. I've been on it for just about two months. It has been non-stop horrible. Nausea, diarrhoea, dizziness, skin infections, headaches, back aches, ton-of-bricks fatigue, depression, vision trouble, weakness - I've hardly left the house. It feels like an exacerbation. Going back to the Neuro. Maybe this a great drug if you're RRMS. It doesn't seem to go well once you've progressed. I have it two stars for "ease of use" because it's hardly difficult to swallow a tablet, but it is quite hard to keep taking something that you know is making you feel dreadful. Read More Read Less
I just got off of Gilenya because the side effects are getting worse. I was on Gilenya for 11 months and was happy to be taking an oral medication but then started having severe diarrhea and then severe stomach pains. I've been off the medication for a couple months and still having stomach pains. Anybody in the same boat?
I've been taking Gilenya for 2 years, I used to feel very normal and I didn't experience any symptoms at all, the only problem was, my liver enzymes used be very High until it reach to over limit, That time I stopped Gilenya for 3 month and then I had a horrible attack, after that I started a treatment called Obagio, I wasn't comfortable at all, seems like its not effective, so I stopped it, and back to gilenya.... I love my life now, no side effects no symptoms and I don't feel anything at all, My liver Enzymes are good..and thanks for the dark chocolate and green which are my habit every day and it helps my liver enzymes to be normal.. Read More Read Less
I have been taking this drug now for 4 months. I was not taking anything before for my MS. I have experienced hairloss, luckily I had thick hair before. I also have experienced some weight gain. I hoping to reverse that.
I am very pleased with the effectiveness of this medication. I was previously on copaxone daily injections for three years. After developing lumps, going through the pain and anxiety of the shots it was time to for a change. I have been taking the daily gilenya tablets for 6 months now, and this will be my second year of being lesion and episode free. At first I was terrified at the idea of messing with my lympnods and T-cells. Reading the deaths reported early on in the trial stages. But when I further investigated into the difference in dosage it made it easier to swallow. I now am more physical, walk longer, back in the gym and don't get the lazy foot when I walk for long periods. I'm not sure if its related but I used to get the random shiver, it has now stopped. I still also avoid dairy, eat healthier, avoid hard alcohol (although a scotch once in a while is nice), don't smoke and take a regular bought of vitamins especially Vitamin D.Read More Read Less
I have MS since 1990. I was in treatment with interferon b1b since 1995. A year ago interferon could not help me any more. I changed to gilenya. Results are wonderful.I can work a lot. I walk distances 4km and more without problem. I really hope it will remain like that
5 years taking Gilenya. Drug works great, wish they would make a lower strength option, maybe .25mg. I would recommend everyone to give Gilenya a try. I don't eat peanuts, drink milk, or beef. I would recommend anyone with MS to avoid peanuts,milk, and beef. It would be nice if Novartis would lower their price to make gilenya affordable.
I am a 46 year old woman who runs her own business. I was diagnosed with MS in 2012. Having tried Avonex and suffered bad side effects, I asked my neurologist about Gilenya. It gas been amazing! No needles, but more importantly, no side effects, at least so far.. I have been taking the medication for just over a year and have suffered no notable relapses. It has transformed my negativity. I was surprised to read that others had suffered horrendous side effects. I found the side effects with Avonex terrible, but as I say, none, at all with Gilenya. Hope this helps anyone trying to make a medication decision!Read More Read Less
i feel great, no side effects what so ever!!
Avonex for 16 years took its toll (needles) so went to Gilenya. After 3 mos, severe cold turned to bronchitis, sore throat, chills. On my 12th week of this mess, STILL!! Doing well with MS, however, can't live my life coughing my brains out every day. See neuro in a week to discuss alternative. Grr! Pill is so easy.
I was diagnosed 10/2010. I started on rebif and within 1 year I had a new lesion on my brain. My doctor was against me taking Gilenya at the time since it was recently approved by the FDA. Since the change, I've only experienced high liver enzymes but that's it. I feel normal, no new lesions, no major side effects. I do have blood work every 3 months and Mri's every 6 months.
Started Gilenya due to being on Tysabri for 5+ years and looking for a safe and easy alternative that would give me the same great results that Tysabri had during that time. I was on Gilenya for only 6 days due to the horrible side effects that I experienced. Headaches, nausea, stomach cramping, lethargy and severe bradycardia that didn't show up until day 3 of being on the medication. I am now back on Tysabri and doing well. I am worried about the PML issue, but it is better than the experience that had with Gilenya. The idea of just taking a pill was nice, but the side-effects were not.Read More Read Less
i just started taking Gilenya after taking Annovex for almost four years. The only side effect I have experienced is feeling just plain bad if I don't take the pill at the same time each day. So far, I'm back to ballroom dancing and yoga,again. I feel more balanced then before, I'll risk that side effects to have a more normal life. I had to fight for myself with my doctors nurses more than the doctor. I can't wait for my next MRI and doctor's appointment. To show his nurses that I'm a warrior who has MS not Warrior who MS has. Read More Read Less
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