User Reviews for Gilenya oral

So far, so good. I'm not experiencing any side effects, no exacerbations. :) An answer to my prayers...

I've been on Gilenya for 1 year this week and have had no new symptoms or side effects AT ALL. I've been extremely pleased. I was diagnosed 5 years ago and have done Beta Serone and Copaxone both with a lot of side effects. No more shots! I will continue on as long as there's no future complications with the med.

I have been on this drug for 10 days. I know that I need to give it more time but I began noticing a feeling of heaviness in my arms and legs the day after I started. Its been hard to wake up. My head feels a little fuzzy and my back and joints ache. It feels like my MS symptoms are back even though I went four months feeling fabulous with no medication before starting this drug. I am suspicious but am committed to giving it more time. I'll review again in a couple months.

They really downplay possible serious side effects. I have almost gone blind taking this. I developed Macular Edema and am now going broke going to 2 eye specialists. 1st case they have seen. Trying to have a rep call me back from the co. to tell me what long term side effects I will have was a joke I was told no one can help me. As a nurse I am so disappointed. I really thought that this drug would help my M.S. but it has just cost me a ton of $ and now they won't even let me take my Avonex because no one knows if this will make me worse. Now my M.S. is getting worse. I warn everyone I read the small print, was cleared to go on this med. Macular Edema is a serious and potentially devastating disease. Think twice about taking it. When your vision starts to blur don't think it is the M.S. I lost all vision in my right eye within 20 days of taking this med. Not worth it.Read More Read Less

I was a bit hesitant of taking Gilenya, as I already have bad eye issues and asthma. I’ve been on it for 6 months now and I can honestly say it’s the best I’ve felt since 2004 (when I was diagnosed). I’ve taken: Beta Seron, Copaxone, and Tysabri (Copaxone being my least favorite). I loved Tysabri, but it wasn’t doing the job, so they put me on Gilenya. I noticed that I was a little out of breath doing normal activities the first few weeks after starting it, but it was only for the first few weeks. I am usually a troll in the sun anyways, and I feared my eyes were not going to be able to handle it…but I’ve had no problems!! It’s easier and less painful than taking a shot. I have gained a little bit of weight, but I could chalk that up to the new birth control pills I started around the same time (a little meaning 5 pounds). I just hope it continues to work as well as it is… I go to my neurologist in December and I’m sure they will give me an MRI…I’ll let you know how things are going!Read More Read Less

I started Gilenya in Feb, 2011 after failing all the injectable MS meds. I was diagnosed in 2007, and initially, I felt the best I had felt in 4 years! In May, I hiked over 2 miles up a steep mountain, and felt like my life was finally going to be back to normal. Then, in July, I started the worst relapse ever. I am still not back to my baseline and I fear the Gilenya may not be working. My eyes are definitely more light sensitive and actually hurt sometimes. I have gained almost a pound a month, despite a very disciplined diet. I am likely going to stop this med if I don't start feeling better soon and stop gaining weight!!Read More Read Less

At first heart rate dropped to 60. After first dose I felt short of breath, no energy. I thought i needed to give myself time to get used to the drug. I notice I was losing a lot of hair. I became progressively weaker and was experiencing extreme dizzy spells. After deciding this drug is not worth my health I quit taking it after 7 weeks. I was able to work full time but with the extreme weakness, shakiness and dizziness I am not sure if I will be able to continue working at all. I find myself hanging on to things to get around and find it hard to even write my name. I have never experienced anything like this before. It is just getting worse even after being off the Gilenya for about 10 days now. I wish i never took the drug.Read More Read Less

After treating MS with injection and having terrile side effects I refused to take them and then finally talked my Dr. into allowing me to try this I am very pleased. NO SIDE effects. Much easier than shots every other day and much less sickness/fatigue. I just started this so I can't judge effectiveness just yet, but overall WAY BETTER than injections..

Been on Gilenya for 5 months with no side effects. Convenient to take. No relapses.

I have been diagnosed with M.S. since 1995. I had a nice run with no need for meds for 7 years. Went into a relapse, Dr. put me Copaxone. Worked good for awhile, the dr put me on Tysabria. All I did with that was go downhill. Dr now has me on gilenya. Been on it for going on 7 months. I really don't like I am improvong with this med. All I have gotten so far is a sore throat it took 2 mo nths to get over, that was wth the help of K-flex. Been having sleeping problems but dr prescribed gelinya, that works good. And now my first flar-up since I have been on gelinya. Don't get me wrong, it's easy to take. So much easier, not to mention the P.I.T.A from the shots of copaxone. That was annoying...shot every day. You eventually get a big pile-up of scar tissue, not to mention I had lots of exaserbations, almost like every 2 to 3 months. I like gelinya but truthfully I do not know if it is working.Read More Read Less

Been on for over 6 months, no side effects no more trouble with being tired. Crossing fingers it stays this way, newly diagnosed a couple years ago and this is a blessing as nothing else was working for me! Glad my Dr. let me try this!!

Have had no side effects from this drug. Easy to take. I seem to have lots of blurry vision since taking the drug.

When I first tried the drug, both blood pressure (BP) and heart rate low, esp. BP extremely low 67/40. Waited 2 weeks, tried again at different sight, BP lowered only to 90/60) (tendency to have low BP 100/60, so no risk of increased high blood pressure. After start taking drug, didn't feel well. WBC (white blood count, very tired, fatigued, felt like flu-like symptoms, had a cough (for a week). These subsided except WBC kept lowering,and then had low back pain, spasms worsen (definitely felt like have exacberation. My legs, feet, toes, ankles have worsen or spasms for the first time. Walking isn't good. My body feels worse than I started. I hope the spasticity gets better and low back pain goes away. Will return back to copaxone.Read More Read Less

I was diag over uyrs ago with MS with no treatment until n ow. The Gilenya sounded really great so I decided to gived it a try. Th week I had my first dose with no problems until I got home. I feel like a complete relapse has taken over my body. Thin gs where moving, I called my Gilenta support andc the informed me to contact my dr which I did and she informed me to stop taking it and get to my eye dr ASAP to get che checked. The vision side effect of Macular edema is not suppose to show up for 3 mths or longer. My eye dfr c ould not believe what he was seeing. My eyes where moving up and down so much he could n ot even do a good exam, said I was having rapid vertical mystagmus going on in b oth eyes. To sum it up I can not see very muc h at all along with tightness in my throat, heaveyness in my chest, baCK & feet. My walking is like I have a overhang , ear lobes feel like there is novacaine in them along with tingeling in my hands. I am a mess right now and dcont think I will go bavk o n this. Good luck to all that are trying it I guess my nervous system does not like it. I just want to be able to see, walk and feel things again.Read More Read Less

I have been on this drug for almost 8 months. So far, so good. The Rebif made me feel constantly sick. I have recently been experiencing more back pain and more fatigue. Not sure if it is Gilenya related or just MS related. Currently, relapse free for 2 years....so we will see.

Have done all ms rxs with none helping enough to justify bad side effects. Was in trial and did great, until ast/alt levels 5x. Neuro okd trying again when approved. Love it still, but liver acting up again. Now taking every other day crossing my fingers

I am now into my 6th week on Gilenya. I initially had throat issues,but that has gone away. Also, I experienced some hip pain which has subsided as well. I feel very fortunate to have no ongoing side effects. Some difficulty with falling asleep, creating tough bouts with fatigue, but I feel that is not related to Gilenya. A couple Sominex has helped the problem greatly. I'm not unrealistic about improvement, I only hope for slower progression. So far, so good. Positive attitude goes a long way. Don't concentrate on what you can't do anymore, but what you CAN do. Good luck to all. Len Cara on Facebook Read More Read Less

I am almost to my third month on this medication. Within the first week of being on it I started having a serious exasterbation of symptoms. I have tremors that run all the way to my neck, my legs have just recently started showing signs of tremors as well. I am tired constantly. My head aches almost all day every day. I started with numbness and tingling in my toes it now goes to my knees and my hands are now starting to act up too. My muscles feel like they are trying to pull themselves from the bone. And my back spasms regularly...more noticably at night I think because I am trying to relax to fall asleep and my body is refusing to do so. My doctor put me on steriods to try and control the exasterbation and instead we found out that i am allergic to Solumedrol...so now to add to all the symptoms I'm having I have a terrible rash all over my back and face and pretty intense swelling. I want so badly to feel somewhat normal and this has actually made me worse...so it looks like shots are in order for me and I'm even more scared of those. Read More Read Less

I was on the study of this drug for 2 yrs, now on actual drug since March 2011. Don't know if it is helping, I'm hoping. I'm in a huge relapse since Feb '10. So I'm hoping that it can keep me from progressing. I need to heal because this is the worst since I was diagnosed in 1991. Was good for most of my adult life till past 4 yrs gone to pot..lol. O'well hoping for symptoms to back off for a bit.