User Reviews for Gilenya

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24%(8)
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Gilenya review summary

8.1/10 Average Rating

34 Ratings with 33 User Reviews

Compare all 59 medications used in the treatment of Multiple Sclerosis.

Reviews for Gilenya to treat Multiple Sclerosis

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Review by Ellezy: User Rating:  
   
8.0

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.

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December 16, 2013 8:35 AM
Review by BluDee (taken for 1 to 2 years): User Rating:  
   
9.0

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.

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November 28, 2013 1:53 PM
Review by Anonymous (taken for 6 months to 1 year): User Rating:  
   
7.0

I have been taking Gilenya for close to 10 months now. I was on Rebif and suffered horrible side effects that never did go away ( flu symptoms, migraines ). I had a very severe relapse where I lost the ability to walk for months. I started the new pill medication and have had no side effects whatsoever. What a relief! I can't tell if it's working, I guess time will tell and if I ever relapse again. It's a very expensive medication, thankful my extended benefits cover it. I would recommend this if Tysabri is not for you ( JC Virus positive ). A few laughs in light of a serious health problem...I am a mad cow! lol. And those of you who are JC positive - you will know what I mean.

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November 6, 2013 2:48 PM
Review by NikkiBre: User Rating:  
   
8.0

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.

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August 18, 2013 6:32 PM
Review by CynKing: User Rating:  
   
8.0

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.

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July 13, 2013 8:51 AM
Review by twotrip (taken for 1 to 2 years): User Rating:  
   
9.0

I was on Rebif and it worked well for me. Ten years later I started having Multiple Sclerosis attacks about every 3 months. It was like my body had built up a tolerance for Rebif, so I started on Gilenya. In fact I would have rated it a ten. I unfortunately broke my foot and ankle. I ended up needing two surgeries. I had a MS attack after each surgery. I believe the attacks were brought on by such a trauma to my body. I am still taking Gilenya and have had no side affects or another attack.

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May 30, 2013 7:38 PM
Review by KKKI: User Rating:  
   
6.0

I am 41 years old and have been recently told that I have Multiple Sclerosis. I had 3 MRI's that confirmed it. My symptoms include tingling in my feet and right hand. I am a runner and love to exercise. Getting ready to start taking Gilenya and am feeling very nervous about it.

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May 27, 2013 10:30 AM
Review by My o my: User Rating:  
   
5.0

Very easy to take a pill form medicine vs injection. I experienced very low white blood cells with terrible headaches, body aches, tiredness and nausea after taking the medicine for 4 months. I am slowly feeling better after just two weeks without any medication; I have an appointment with Dr. next week.

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May 13, 2013 4:14 PM
Review by Just2Jill (taken for less than 1 month): User Rating:  
   
3.0

I just started Gilenya through a research study (or I couldn't afford it) a week ago. I had minor flu like symptoms the first 72 hours and then increased energy the past several days. I have experienced hot flashes at night sometimes. I have never been on any meds since being tested for Multiple Sclerosis in 2005. I am thankful I don't have to take the injections. Tired and oddly depressed today. Hoping that goes away soon and isn't a lasting side effect.

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May 2, 2013 5:55 PM
Review by Jimmie38: User Rating:  
   
8.0

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.

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April 18, 2013 9:26 AM
Review by BicStic (taken for 6 months to 1 year): User Rating:  
   
7.0

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!

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April 10, 2013 4:30 PM
Review by DallasChic (taken for 1 to 6 months): User Rating:  
   
9.0

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.

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April 4, 2013 12:41 PM
Review by GoWildcats: User Rating:  
   
9.0

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.

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March 7, 2013 3:21 PM
Review by Lil Kaza (taken for less than 1 month): User Rating:  
   
7.0

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.

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March 6, 2013 1:59 AM
Review by Sacramentoan: User Rating:  
   
10

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.

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January 11, 2013 1:48 AM
Review by Cobra Driver (taken for 1 to 2 years): User Rating:  
   
10

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.

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September 29, 2012 7:19 PM
Review by Anonymous (taken for 6 months to 1 year): User Rating:  
   
10

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.

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May 4, 2012 10:10 AM
Review by AZSteve: User Rating:  
   
6.0

So far, no problems except a sore throught. It's only been 4 days I'll update later as I'm expecting good things from what I've read

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April 15, 2012 2:49 PM
Review by Gracie9658: User Rating:  
   
9.0

I have been on Gilenya for 5 weeks with minimal side effects. Had some nausea the first 5 days and took meclizine over the counter and it quickly resolved. Due to the MS I was dizzy and felt like I was pitching forward when driving and going down steps. I am not nearly as dizzy and the feeling of falling forward is much less. I hated the Copaxone injections which began making dents in my thighs not to mention the pain, itching and swelling at the injection site.

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April 13, 2012 10:53 AM
Review by Anonymous: User Rating:  
   
10

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.

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November 30, 2011 10:23 PM
Review by Anonymous: User Rating:  
   
7.0

Have been taking this for almost 9 months as other injections failed to work for me. It started out good but a few months into using it I developed severe night sweats. I am coping with it for now as the side effects from other multiple sclerosis medicines were much worse.

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November 21, 2011 10:07 PM
Review by Anonymous: User Rating:  
   
9.0

I have been on Gilenya since February of this year. So far it is great. Some days my body pain is a bit more but not 100% sure its the medicine or just the MS. I am thrilled to get to take this so far..especially because its a pill and not a shot.

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October 23, 2011 1:54 PM
Review by Anonymous: User Rating:  
   
10

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.

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September 18, 2011 12:55 PM
Review by Anonymous: User Rating:  
   
5.0

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.

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September 15, 2011 8:31 AM
Review by loraluv3: User Rating:  
   
7.0

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.

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September 15, 2011 4:35 AM
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