Comment from: JG2Springer 55-64 Male 10 years or more Patient Published: October 03

I was in the investigational drug study for gilenya. Got on this treatment after presenting with my second lesion. Now 12 yrs later,0 new lesions, and the only side effects have been slightly elevated liver enzymes and a six month increase in cold sores in the very beginning. This has been a wonder drug for me.

Related Reading: gilenya | treatment | liver

Comment from: SoTired 35-44 Female less than 1 month Patient Published: December 01

I have been taking vitamin B12, D3, and cinnamon for years. I went longer on that regimen without an attack, but here I am, Iâ??ve had an attack and I need to go on something so Gilenya is my neurologistâ??s answer. Iâ??m only on week 2, but Iâ??m exhausted, irritable and feeling depressed. My energy is everything to me. Itâ??s my good mood, my ability to get things done, to keep things going as a working mom, but itâ??s gone. Itâ??s really disheartening that I may be trading my energy for fewer attacks.

Related Reading: b12 | gilenya

Comment from: BT 45-54 Female 6 months to less than 1 year Patient Published: July 24

i have been taking Gilenya for 6 months. Had no side effects. Love not taking rebif shot anymore.

Related Reading: gilenya | rebif

Comment from: Well this sucks. 45-54 Female 1 to 6 months Patient Published: April 18

I have SPMS. I was taking Copaxone; told it wasn't working anymore - I should take Gilenya. I've been on it for just about two months. It has been non-stop horrible. Nausea, diarrhoea, dizziness, skin infections, headaches, back aches, ton-of-bricks fatigue, depression, vision trouble, weakness - I've hardly left the house. It feels like an exacerbation. Going back to the Neuro. Maybe this a great drug if you're RRMS. It doesn't seem to go well once you've progressed. I have it two stars for "ease of use" because it's hardly difficult to swallow a tablet, but it is quite hard to keep taking something that you know is making you feel dreadful.

Related Reading: copaxone | gilenya | dizziness

Comment from: mathgimpy 45-54 Female 6 months to less than 1 year Patient Published: March 15

I just got off of Gilenya because the side effects are getting worse. I was on Gilenya for 11 months and was happy to be taking an oral medication but then started having severe diarrhea and then severe stomach pains. I've been off the medication for a couple months and still having stomach pains. Anybody in the same boat?

Related Reading: gilenya | diarrhea

Comment from: Imad 25-34 Male 5 to less than 10 years Patient Published: July 26

I've been taking Gilenya for 2 years, I used to feel very normal and I didn't experience any symptoms at all, the only problem was, my liver enzymes used be very High until it reach to over limit, That time I stopped Gilenya for 3 month and then I had a horrible attack, after that I started a treatment called Obagio, I wasn't comfortable at all, seems like its not effective, so I stopped it, and back to gilenya.... I love my life now, no side effects no symptoms and I don't feel anything at all, My liver Enzymes are good..and thanks for the dark chocolate and green which are my habit every day and it helps my liver enzymes to be normal..

Related Reading: gilenya | liver | treatment

Comment from: Dianesw 45-54 Female 1 to 6 months Patient Published: July 14

I have been taking this drug now for 4 months. I was not taking anything before for my MS. I have experienced hairloss, luckily I had thick hair before. I also have experienced some weight gain. I hoping to reverse that.

Comment from: HappyMS 35-44 Male 1 to 6 months Patient Published: May 10

I am very pleased with the effectiveness of this medication. I was previously on copaxone daily injections for three years. After developing lumps, going through the pain and anxiety of the shots it was time to for a change. I have been taking the daily gilenya tablets for 6 months now, and this will be my second year of being lesion and episode free. At first I was terrified at the idea of messing with my lympnods and T-cells. Reading the deaths reported early on in the trial stages. But when I further investigated into the difference in dosage it made it easier to swallow. I now am more physical, walk longer, back in the gym and don't get the lazy foot when I walk for long periods. I'm not sure if its related but I used to get the random shiver, it has now stopped. I still also avoid dairy, eat healthier, avoid hard alcohol (although a scotch once in a while is nice), don't smoke and take a regular bought of vitamins especially Vitamin D.

Related Reading: copaxone | anxiety | gilenya

Comment from: 45-54 Male 10 years or more Patient Published: April 06

I have MS since 1990. I was in treatment with interferon b1b since 1995. A year ago interferon could not help me any more. I changed to gilenya. Results are wonderful.I can work a lot. I walk distances 4km and more without problem. I really hope it will remain like that

Related Reading: treatment | gilenya

Comment from: What is? 35-44 Female 5 to less than 10 years Patient Published: January 25

5 years taking Gilenya. Drug works great, wish they would make a lower strength option, maybe .25mg. I would recommend everyone to give Gilenya a try. I don't eat peanuts, drink milk, or beef. I would recommend anyone with MS to avoid peanuts,milk, and beef. It would be nice if Novartis would lower their price to make gilenya affordable.

Related Reading: gilenya

Comment from: Marjy 45-54 Female 1 to less than 2 years Patient Published: January 15

I am a 46 year old woman who runs her own business. I was diagnosed with MS in 2012. Having tried Avonex and suffered bad side effects, I asked my neurologist about Gilenya. It gas been amazing! No needles, but more importantly, no side effects, at least so far.. I have been taking the medication for just over a year and have suffered no notable relapses. It has transformed my negativity. I was surprised to read that others had suffered horrendous side effects. I found the side effects with Avonex terrible, but as I say, none, at all with Gilenya. Hope this helps anyone trying to make a medication decision!

Related Reading: avonex | gilenya

Comment from: 25-34 Male 1 to 6 months Patient Published: January 11

i feel great, no side effects what so ever!!

Comment from: Eileen 55-64 Female 6 months to less than 1 year Patient Published: November 24

Avonex for 16 years took its toll (needles) so went to Gilenya. After 3 mos, severe cold turned to bronchitis, sore throat, chills. On my 12th week of this mess, STILL!! Doing well with MS, however, can't live my life coughing my brains out every day. See neuro in a week to discuss alternative. Grr! Pill is so easy.

Related Reading: avonex | gilenya | sore throat

Comment from: sny76605 35-44 Female 2 to less than 5 years Patient Published: November 06

I was diagnosed 10/2010. I started on rebif and within 1 year I had a new lesion on my brain. My doctor was against me taking Gilenya at the time since it was recently approved by the FDA. Since the change, I've only experienced high liver enzymes but that's it. I feel normal, no new lesions, no major side effects. I do have blood work every 3 months and Mri's every 6 months.

Related Reading: rebif | gilenya | liver

Comment from: Nate 45-54 Male less than 1 month Patient Published: September 15

Started Gilenya due to being on Tysabri for 5+ years and looking for a safe and easy alternative that would give me the same great results that Tysabri had during that time. I was on Gilenya for only 6 days due to the horrible side effects that I experienced. Headaches, nausea, stomach cramping, lethargy and severe bradycardia that didn't show up until day 3 of being on the medication. I am now back on Tysabri and doing well. I am worried about the PML issue, but it is better than the experience that had with Gilenya. The idea of just taking a pill was nice, but the side-effects were not.

Related Reading: gilenya | tysabri

Comment from: Tangomomma 45-54 Female less than 1 month Patient Published: July 14

i just started taking Gilenya after taking Annovex for almost four years. The only side effect I have experienced is feeling just plain bad if I don't take the pill at the same time each day. So far, I'm back to ballroom dancing and yoga,again. I feel more balanced then before, I'll risk that side effects to have a more normal life. I had to fight for myself with my doctors nurses more than the doctor. I can't wait for my next MRI and doctor's appointment. To show his nurses that I'm a warrior who has MS not Warrior who MS has.

Related Reading: gilenya


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Comment from: jmgaz 35-44 Female 2 to less than 5 years Patient Published: May 29

Have taken almost 3 years. MRI has shown no changes for 2 years. I do occasionally fall, feel dizzy, and possess fatigue however feel it's the disease not the drug. The cost of the prescription is difficult. I've been cut off of AZ medicaid and Obamacare offered me an $1100 deductible.

Related Reading: fatigue

Comment from: deb 45-54 Female 1 to 6 months Patient Published: May 20

awful, worst pain I've ever had,quit and restarted to make sure was the culprit

Comment from: Fee 45-54 Female 1 to 6 months Patient Published: May 11

Im not sure with Gilenya as I have more symptoms and not sure if its MS or the drug! I have lower back pain and down the Left leg numbness chest area which I didnt have starting this drug.My numbness right side of my head has gone which is good. I have a MRI shortly on brain and spine to compare with last year and see Neuro which will be interesting.

Related Reading: gilenya

Comment from: 65-74 Female 6 months to less than 1 year Patient Published: March 28

When I started treatment I felt great and thought finally something good. Six months in terrible water retention, hair loss, perhaps interfering with thyroid function.

Related Reading: treatment | hair loss


Medical Editor: John P. Cunha, DO, FACOEP

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