User Reviews for Gilenya
The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.
Learn more about Gilenya.
Reviews for Gilenya to treat Multiple Sclerosis
Review by danny boy 1980:
I was on Gilenya (Fingolimod) for 6 months, but because of raised liver function have been take off it. Like most comments I have read, I was so glad to stop injecting after 4 years (avonex) and taking a pill. I have not yet started new treatment but using regular vit d and exersise seems to be working at the moment - (reading comments about insurance cover or not - I am from UK an love the NHS) Gilenya (Fingolimod) did make me feel better and was disappointed to have to stop treatment
|0 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 16, 2015 4:06 PM
Review by Sylvia13 (taken for less than 1 month):
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!
|5 users found this comment helpful. Did you? Yes No||Report as inappropriate|
March 4, 2015 5:42 PM
Review by aprilpixie (taken for 6 months to 1 year):
After 3 years of Rebif, I couldn't poke myself any more!! I was then on Tysabri for 2 years, until my JCV test came back positive. I am now on my 11th month of Gilenya, and LOVE it. My only real symptom is fatigue. I have had a few more headaches than usual, and a very low WBC count, but otherwise, no other side effects. Have always been a yoga-loving vegetarian. Am on Novartis's $0 copay program, so my portion is nothing!
|20 users found this comment helpful. Did you? Yes No||Report as inappropriate|
January 31, 2015 8:15 AM
Review by Lili Pena:
I've had Multiple Sclerosis since 1989, was on Copaxone for 11 years and have been on Gilenya for 2 years. Both worked fine in stopping episodes but injection sides were painful, red, irritation and left holes in my skin. A pill was what I prayed for and its worked for me. The down side its costly and I have asked for help with co pay which Gilenya did not provide but Chronic Health Funding did. is helping a little. The thing I worry about is since I started Gilenya I've gotten lots of colds ending up in asthma attacks, at least twice a year. When I questioned my Neuro he said he didn't think they had any connection.
|7 users found this comment helpful. Did you? Yes No||Report as inappropriate|
January 10, 2015 2:10 PM
Review by deerocks (taken for 2 to 5 years):
Gilenya is by far the best medication so far in treating my multiple sclerosis. Easy to take and with few to any side effects. Highly recommend.
|23 users found this comment helpful. Did you? Yes No||Report as inappropriate|
January 9, 2015 8:36 PM
Review by Day11 (taken for 5 to 10 years):
I was in clinical trial and continued on Gilenya for 5 years after. Overall awesome medicine regarding management of my multiple sclerosis progression based on MRI of brain. Symptoms did worsen over time as it is not a cure and well progression happens. Made decision with Neuro to switch to another treatment (Aubagio) due to lesions showing on spine and a black hole showing on brain MRI - never had side effects to mention except maybe additional tiredness after dosing, switched to nights for 3 months but then went back to mornings. Blood pressure ran low from an hour till about 3 hours following dosage but never to a point of dizzy or passing out. Was usually 50/70 to 60/80 which freaked out nurses but my BP was always around 80-82. I recommend it!
|15 users found this comment helpful. Did you? Yes No||Report as inappropriate|
November 14, 2014 3:01 PM
Review by Jim Ft Lauderdale (taken for 1 to 2 years):
Been on Gilenya 15 months. So far so good. Last MRI of brain showed no new lesions and several existing ones shrank a little. Wish there was more upbeat news to report, but I am pleased with the status quo.
|50 users found this comment helpful. Did you? Yes No||Report as inappropriate|
August 1, 2014 2:12 PM
Review by Docack (taken for 1 to 2 years):
I have been on Gilenya for a year now and I am very happy with it. I can now do things I could not do while on Copaxone or Avonex. One issue I have found while on Gilenya is I get dizzy spells often, but other than that I am happy. For those of you that say it's costly call your Gilenya rep and get them to pay your co-pay it helps. Check with your doctor about taking more Vitamin-D and Vitamin-C, this will help with colds etc.
|40 users found this comment helpful. Did you? Yes No||Report as inappropriate|
May 30, 2014 10:24 AM
Review by Bgolfin (taken for 1 to 6 months):
Started using Gilenya and felt better after a weeks time. However, I constantly felt dehydrated and my skin looked dried out even with consuming much water. I was urinating a dark color and after taking blood test a month into treatment my liver levels were high. I continued treatments for another month and a half but my liver levels continued to increase so I stopped my prescription. I will say I was feeling better with less mood swings and my spirits felt lifted and the lesions were reduced and minimal.
|31 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 29, 2014 1:21 PM
Review by aussie_em (taken for 2 to 5 years):
I started Gilenya in early 2011 as I had a severe relapse. Beforehand I was on Copaxone but it wasn't very effective and left itchy sore red marks. Gilenya has been very effective as in my lesions have stabilised and have shrunk a little. The downside for me is that if you get an infection or a wound, it takes a long time to heal. You have to keep an eye on it and maintain it if it happens to you as it might get worse. I suffer lightheadedness when standing up and nausea as well. You are more susceptible to colds and flu as well so make sure you ask your doctor for a flu shot every year. The side effects are tolerable. I have NOT had a relapse since and given there isn't a cure for Multiple Sclerosis, this is the best medicine available in Australia.
|48 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 18, 2014 11:27 PM
Review by Ellezy:
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.
|51 users found this comment helpful. Did you? Yes No||Report as inappropriate|
December 16, 2013 8:35 AM
Review by BluDee (taken for 1 to 2 years):
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.
|62 users found this comment helpful. Did you? Yes No||Report as inappropriate|
November 28, 2013 1:53 PM
Review by Anonymous (taken for 6 months to 1 year):
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.
|32 users found this comment helpful. Did you? Yes No||Report as inappropriate|
November 6, 2013 2:48 PM
Review by NikkiBre:
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.
|79 users found this comment helpful. Did you? Yes No||Report as inappropriate|
August 18, 2013 6:32 PM
Review by CynKing:
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.
|66 users found this comment helpful. Did you? Yes No||Report as inappropriate|
July 13, 2013 8:51 AM
Review by twotrip (taken for 1 to 2 years):
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.
|55 users found this comment helpful. Did you? Yes No||Report as inappropriate|
May 30, 2013 7:38 PM
Review by KKKI:
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.
|42 users found this comment helpful. Did you? Yes No||Report as inappropriate|
May 27, 2013 10:30 AM
Review by My o my:
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.
|53 users found this comment helpful. Did you? Yes No||Report as inappropriate|
May 13, 2013 4:14 PM
Review by Just2Jill (taken for less than 1 month):
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.
|42 users found this comment helpful. Did you? Yes No||Report as inappropriate|
May 2, 2013 5:55 PM
Review by Jimmie38:
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.
|88 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 18, 2013 9:26 AM
Review by BicStic (taken for 6 months to 1 year):
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!
|62 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 10, 2013 4:30 PM
Review by DallasChic (taken for 1 to 6 months):
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.
|69 users found this comment helpful. Did you? Yes No||Report as inappropriate|
April 4, 2013 12:41 PM
Review by GoWildcats:
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.
|65 users found this comment helpful. Did you? Yes No||Report as inappropriate|
March 7, 2013 3:21 PM
Review by Lil Kaza (taken for less than 1 month):
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.
|35 users found this comment helpful. Did you? Yes No||Report as inappropriate|
March 6, 2013 1:59 AM
Review by Sacramentoan:
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.
|142 users found this comment helpful. Did you? Yes No||Report as inappropriate|
January 11, 2013 1:48 AM
Learn more about Multiple Sclerosis
Micromedex® Care Notes:
Related encyclopedia articles:
- BAER - brainstem auditory evoked response
- Bowel retraining
- Cerebral spinal fluid (CSF) collection
- CSF oligoclonal banding
- CSF total protein
- Head MRI
- Lumbar MRI scan
- Multiple sclerosis
- Multiple sclerosis - resources
- Remembering tips
- Urinary catheters
Symptoms and treatment for:
Mayo Clinic Reference: