Gilenya User Reviews

Gilenya - User Reviews

Gilenya User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Gilenya sorted by most helpful. Patient Discussions FAQs


Comment from: DLS, 45-54 on Treatment for less than 1 month (Patient) Published: May 27

I had posted my symptoms on 3/16 and see someone else posted the same side effects! It was horrible! The minute I told my doctor what was going on he took me right off the Gilenya. I felt better within a couple of days. I am still taking a break from the meds and am now feeling symptoms of my ms. I will be going back on the AVONEX in a couple of weeks. The tremors, heart pounding out of my chest, dizziness and lump in my throat were the worst side effects from any drug I have ever taken. It's hard enough dealing with the ms. If the side effects out weigh the benefits then it's not a good choice.

Related Reading: tremors | dizziness

Comment from: karen, 45-54 on Treatment for less than 1 month (Patient) Published: April 10

First , I gave 1 star for effectiveness because it's too soon to tell if it's working. It's been over 2 weeks & already my hair is falling out , I've put on weight , noticed my walking is not as brisk and overall feel very fatigued. I'm going to stick with it for a month because I'm hoping these side effects will pass. As long as I feel pretty good otherwise , we'll see hot it goes.

Comment from: dawg49, 45-54 Female on Treatment for less than 1 month (Patient) Published: February 19

Waited 11 years for last Wednesday, the day I started taking Gilenya. Only issue so far is mini headaches that stay for a few minutes and go away.....NO MORE NEEDLES!!!!

Comment from: 45-54 (Patient) Published: August 20

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.

Related Reading: high blood pressure | flu | cough

Comment from: Len, 45-54 Female on Treatment for 1-6 months (Patient) Published: August 07

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

Related Reading: fatigue

Comment from: 45-54 on Treatment for less than 1 month (Patient) Published: April 07

Comment: I have been on Gilenya for 2 weeks and I started having side effects: tremors, light headed/dizzy, swelling in my throat, jaw tightness, nauseous, heavy chested and my heart is racing. I called my Gilenya support nurse and she recommended calling my doctor right away. My doctor directed me to stop taking Gilenya. **If the female that posted on 3/16 reads this, who had the similiar side effects, would you please post again to let us know what happened.

Comment from: English teach, 35-44 on Treatment for 1-6 months (Patient) Published: February 23

This is so much better than injections! I have been waiting 11 years for this, but if my insurance doesn't cover the costs, then it'll be back to the shot for me. I couldn't believe the cost per month when I saw it!

Comment from: CatLover, 55-64 on Treatment for 1-2 years (Patient) Published: February 18

Been in the clinical trial for 3.5 years and know I've been on drug for at least the last 1.5...No exacerbations and I feel better than I've felt in years! Only a little sensitivity to light in my eyes. Otherwise it's been great! Cost is the only drawback, but for now Novartis is picking up my copay. When that ends...I stop taking the drug.

Comment from: yelley79, 25-34 on Treatment for 6 months - 1 year (Patient) Published: November 04

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!

Related Reading: asthma | Tysabri | birth control


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