User Reviews for Gilenya oral

dizziness nausea hot flashes tiredness

Gilenya has made a big positive difference in my life! Diagnosed with MS in 1999, I was on the injectible drug Avonex for 12 years before Gilenya came out in 2011. Now I take my pill every night and have not had any side effects whatsoever. My energy level has gone up and I have never felt better. I feel like a normal person again, and I don't have to plan my day on injecting a needle into my shoulder! Highly recommended.

I was diag in 2003. I have taken all injection medications with awful side effects. The start of the pill I had to undergo blood work and, heart monitoring at the hospital for 6 hrs after the first dose to watch for reaction. All is well. The only issue I have been bothered with was taking it at night kept me up for hours. I have switched to mornings and have had no issues at all. This is the best thing (for me) since the diag in 2003. I am a Law Enforcement officer and was in the Army (1988-2007) until this MS came into my life. The heat issue and injections kept me from deployment and I had to be discharged. I think if the pill was offered to me back then I would still be in the Military. The pill has made my days so much easier, my thoughts are on happiness and health no longer on lumps and bumps, chills and, needles. Medication given through the Denver VA. I sleep in Peace and wake in Joy! J ~ Denver, Co Read More Read Less

I have had a bit of back ache and feeling extra tired but on a whole I feel so much better.

My husband took Gilenya from November 2011 until December 26, 2012. He began having severe depression, anger issues, comfusion, loss of memory. He also passed out in September 2012 while pumping gas. After the issues became so severe in December 2012, they were discussed with his neurologist. Upon the neurologist seaching his own patient files, several other Glenya patients of his were having the same problems. Husband has regained his sense of humor but memory and confusion still linger. I would be very wary of taking Gilenya. He has had MS since 1977 and has tried many other MS treatments for relapsing MS bu MS hasreally progressed in the last 5 years.Read More Read Less

I was on Avonex for 9 years, I begged my Dr. to take me off of the injections he refused. I switched to a new Dr. he told me that there were other options, I was excited about the pill. Has not effected my heart in any way, no side effects at all like I was expericing with Avonex. I would recommend the pill to anyone. The first dose, sitting in the Dr. office for 6 hours was nothing, I took my I Pad and the day passed by quickly.

My neuro called and wanted me to come in to see him ASAP, he had my blood work back. I've been on Gilenya since 8/11 and was very pleased with it. I have been keeping a UTI infection and didn't know why. last year in February, I had a grand maul seizure due to my temp going up to over 104 and was hospitalized with a very severe UTI. Now I know whey, I've been keeping an infection. Just today, I saw my neuro and was told that my white blood cells count was 1,000, which is really low. Should be between 4 to 5,000. He has taken me off this drug and will be putting me on this new drug that's also a pill. I don't know the name because for now I'm not taking anything.Read More Read Less

I have been on Gilenya since 6/2011. It had been working wonders for me until 1/13. This is when my immune system was completely broken down. What I mean by this is that my white blood cells droped so drastically low that I was getting thrush on my breast, constant yeast infections and colds that I could not fight. In February 2013 , my primary care doctor advised my that any common infection could literally kill me since my body was not producing enough white blood cells to fight. I went to my neurologist and he agreed that I must stop Gilenya immediately or I could die from any infection. He explained that the drug is not allowing my bone marrow to produce any white blood cells needed. The drug has worked wonders for my MS. I have no new lesions and I am stable however the medicine does not realize what are healthy cells with my body and what is bad. Instead of attacking T-cells it is attacking all cells. I am not saying this side effect happens to everyone what I am saying this is a side effect that people need to be aware of so they will know what is happening. When I started getting yeast infections that is commom for women it is not something that is usually discussed with your neuro doc. It was not until I went to my primary care doctor because I was running a fever of 102 and was extremely sick that blood work was done. It was on the low end from the start of taking this med. The new test showed 1.7 and all of my WBC catagories were well below normal. This is just for anyone taking this medication to be aware and to know what to look for as a side effect and question if this is not normal for your body.Read More Read Less

I have been on G for 11 months. I have been on Avonex, Rebif and Copaxone. I was dx MS 9.5 years ago... I am 36. Used to have a flare 1-3 times per year. Have not had one since I've been on G and MRI went from 9 active lesions to 1. I am back to running and working full time. The drug does make me dizzy and I have heart palpitations- hence the 4 stars rather than 5.

Briefly stated, this medication caused me to have a stroke. My doctor, a well-respected neurologist, spent a great deal of time eliminating any other possible cause and finally admitted it was the Gilenya.

33 yo female diagnosed nine months ago. Symptoms started with double vision, tingling in extremities & Lhermitte's sign. Symptoms started to clear up 5 mths later with vitamin sups, bio replacement hormone cream & dietary changes - thx to my naturopath. 2 mths later nuero offered to enroll me in a drug trial. Started with avonex but stopped after a month due to fatigue and severe mental fogginess. Have benn on gilenya for the past month and a half & it has been great. Feel like my normal self again. Will be on it until next oct although my current insurance company doesn't cover it so I may be without meds when that time comes. I recommend that people try this if feasible. Was initially put off by the potential probs that come with the first dosage but all went well. I will say that a significant change in diet (anti inflammation dirt) was key to recovery along with Vit d & b12 supp. After doing research on MS I had to ask for Vit deficiency blood tests & it turned out that I was severely deficient in both. In addition to my nuero my naturopath has been a life saver. Read More Read Less

I have been taking Gilenya about 9 months now. The first 6 months went ok, after blood tests for my liver the dr. took me off for 2 weeks and since I have started back, dizziness so bad if I am not holding on to something I feel like I would over. My health insurance just notified me they will not continue to pay for Gilenya because of the cost.

I have had MS since 2007 and was taking Copaxone for a year or so and got tired of the shots. Just went on Gilenya a couple of weeks ago. I got back to my DR in three months, will see then. IF it does work, and I have had no side effects that will be great but the price is so high.

I am very happy to be free on needles. Gilenya has made treating my MS a lot easier. I set up to take my daily dose with my other pills every night at bedtime, making it more convient to stay with my therapy.

Does it make sense to reduce the immune system in your whole body to stop one thing. No. I knew this and you know it. I have RRMS have never have had a second flare up and due to not being able to tolerate injections, it was suggested I start Gilenya. By 9 months it was clear, this drug was affecting other parts of my body. My skin both outside and inside (I'm a woman) was dry and unhealthy. I had very dark bags under my eyes starting at month 3. Never had bags before taking Gilenya. I couldn't clear seasonal allergies. Abrasions from high heels would take 8 weeks to heal. Pimples didn't clear because there were no white blood build up for them to clean out the pores. My bowel movements were painful and constipated. My MS doctor while not adamant I stayed on, would never suggest that I stop taking the drug. Thanks to my primary care doctor I finally stopped taking Gilenya, and slowly everything has started to reverse itself. I think she saved my life. I may have to walk with a cane one day or be in a wheel chair MAYBE and that's OK, I'd rather deal with that than create something that wasn't wrong to begin with.Read More Read Less

So far the only side effect I have had (besides the expected drop in lymphosites...if that's the right word) is that I have a mild cough. I just have a little patch in my throat and occasionally it makes me cough.

Really bad side effects. Confusion, perceived heart attack, depression, everything that could have happened, happened. Finally taken off if it and now suffering from joint pain, neck and back pain that I did not hae before I started this med. I am not a doc but believe it is a permanent side effect of this drug. I suffered SEVERE back pain during the use and its not as bad since I stopped. I could not even get up in the morning I felt so bad. My behavior was erratic and confusing to others and I really thought I ahd lost my mind. Right now I have stopped MS treatment because I am terrified of side effects. I was taking copaxone before with no side effects but the shot caused me so much aniexty that I would stay up at night just not to give it to myself. Then Is started skipping the shots so we opted to try this drug. My side effects were so bad that I actually was scared to sleep because I was scared I would not wake up. Read More Read Less

As far as effictiveness goes who knows? I can not imagine why this drug is packaged in a blister pack. My hands are the most affected by this disease and it is very difficult to remove the pill. I guess it is easier than injections but still...