Fingolimod for Multiple Sclerosis User Reviews (Page 4)
Brand names: Gilenya, Tascenso ODT
Reviews for Fingolimod
- Mas...
- Taken for 1 to 2 years
- November 16, 2018
Fingolimod "I switched to Gilenya from being on BetaSeron for 15 years (which kept me without any disease progression). BetaSeron started to give me flu-like symptoms every time I took the shot, so I decided to switch to an oral med. For me, Gilenya was awful. I felt awful and I looked awful. When I see pictures of me, I can almost pick out the ones when I was on Gilenya. My first side effect was extreme vertigo, then on top of that, I just felt like my head was a 'brick.' I used to have to go home on my lunch hour and just lay there. Although it stopped disease progression (which was a plus), the side effects, for me, were miserable."
- Moh...
- Taken for 2 to 5 years
- July 5, 2024
"It's the best possible choice. I am taking it just after my disease was diagnosed. No relapse or any side effects in these years. BUT, After three years, my liver enzymes started elevating. I hope my doctor can control them somehow, although I am scared."
Frequently asked questions
- Gilenya vs Tecfidera. How do they compare?
- What are the new drugs used for multiple sclerosis (MS)?
- How much does Gilenya cost?
- What happens when you stop taking Gilenya?
- Smi...
- Taken for 2 to 5 years
- June 13, 2024
Fingolimod "I have been on Gilenya for 3 years and have done well with it. Only major side effect for me has been significant nasal congestion and stuffiness. Learned to live with it. I had my first flare in 3 years."
- Anonymous
- January 26, 2011
"I have been on this medicine for almost 3 months and must say it has a really big impact on my MS. I have improved. Who improves when having this disease for 10 years? I have had side effects such as nausea, malaise, headache, and GI problems, but it's worth it for the benefits."
Are you taking this medicine?
Your review helps others make informed decisions.- Joc...
- Taken for 5 to 10 years
- November 1, 2021
Fingolimod "Anyone loves the idea of taking a pill vs. giving themselves a shot. I have really enjoyed the ease of taking my medication as a pill, however, I have developed recurrent sinus infections over the course of 6 years. It has gotten progressively worse and is affecting my excessive absences from my job, which is undesirable. Looking into an alternative medication. Have previously been on Copaxone and Avonex. Overall, I would say that this has helped with my lesions in my brain and spinal cord. There have been new ones, and some have gotten smaller."
- And...
- Taken for 10 years or more
- April 30, 2025
Fingolimod "I have been on Fingolimod (Gilenya) for 10 years. My MS has been halted in its tracks. No new lesions or increase in symptoms. I am very grateful for the medical science that has led to this drug and the Australian health care system that pays for it and allows me to work and continue to support my family. My only issue is numerous warts on my hands and fingers since my use of it. I get them burnt off, but better than relapsing MS."
More FAQ
- Does Gilenya suppress the immune system?
- Where is Gilenya manufactured and by whom?
- How long does it take Gilenya to work?
- Does Gilenya cause hair loss?
- dee...
- Taken for 2 to 5 years
- January 9, 2015
Fingolimod "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."
- Anonymous
- January 20, 2011
Fingolimod "I have been on this medication for a month and I have not experienced one side effect. SO MUCH better than the shots. We will see later if it is as effective as they say it is."
- Anonymous
- August 3, 2011
Fingolimod "I have been on Gilenya for 3 months now for my Multiple Sclerosis and am very impressed. I have had no side effects."
- Anonymous
- July 28, 2011
Fingolimod "I have been on Gilenya for 8 weeks and just recently noticed my hair has begun to thin. As I brush, numerous strands fall out. I am a 32-year-old female so this is very concerning."
- Rem...
- September 7, 2015
Fingolimod "Been on Gilenya for 3 months. I haven't seen any improvements! In fact, I think I got worse! But who knows what will happen, injections/pills, whatever, but make it work!!"
- AZS...
- April 15, 2012
Fingolimod "So far, no problems, except a sore throat. It's only been 4 days. I'll update later, as I'm expecting good things from what I've read."
- Tam...
- Taken for 5 to 10 years
- May 5, 2017
Fingolimod "After 5 yrs, Gilenya is no longer working for me."
- Mar...
- June 21, 2017
Fingolimod "Was on Rebif over 10 years, went on Gilenya for trial. Stayed on it after trial ended. Tired, slight headache sometimes. Better than taking Rebif. I will take these symptoms any day."
- Man...
- Taken for 1 to 6 months
- July 31, 2019
Fingolimod "I would not recommend Gilenya for MS. It made me worse. I could only take it for 5 months. Then hair thinning, heavy period, halted my walking."
- Anonymous
- Taken for 1 to 6 months
- October 4, 2017
Fingolimod "Hair loss, persistent headache."
- Cry...
- Taken for 6 months to 1 year
- February 12, 2020
Fingolimod "I have been on this medication about 8 months now and have experienced no side effects. I feel a lot better and am able to continue working and doing my everyday life activities."
- Cst...
- Taken for less than 1 month
- November 20, 2016
Fingolimod "The drug lowered my blood pressure after the first dose, so I was not able to continue."
- mat...
- Taken for 6 months to 1 year
- March 13, 2017
Fingolimod "Terrible stomach pains. How long does it last even when I'm off the med?"
- Dis...
- March 9, 2019
Fingolimod "I would NOT recommend Gilenya to anyone. The side effects are simply atrocious. It can cause such severe fatigue."
- Ms ...
- July 5, 2017
Fingolimod "Stabilized my MS symptoms and made it under control. But the medicine is already covered by my insurance so far."
- Kpo...
- Taken for 6 months to 1 year
- November 2, 2017
Fingolimod "I like the convenience of it being a pill. The other medications I've taken for MS have been injections. Problems I'm having are thinning hair and hair loss."
- dus...
- January 26, 2011
"1 month on this medication and no side effects. Love not giving myself shots. Will see doctor in March to see how it is helping. Hoping for the best."
Are you taking this medicine?
Your review helps others make informed decisions.Learn more about Multiple Sclerosis
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- During pregnancy
- Drug class: selective immunosuppressants
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Fingolimod "I, like many, really hesitated starting on treatment when I was diagnosed 2 years ago. I tried 6 months of alternative therapy but felt pretty awful with symptoms and my check up MRI showed more lesions. With two kids under 5 to look after, I sucked it up and went on the Gilenya as recommended by my neurologist. The hospital admission to get started was uneventful and I drove home fine. Then I felt like total crap for about 2-3 weeks as my body adjusted to the drug. Then my symptoms and side effects (dizziness, nausea, headache) started to resolve! My latest MRI showed no new lesions! I am back riding my horse, trail running, and chasing my two kiddies around. I still get some mild symptoms sometimes but overall feel really happy on this drug. Note - I was happy to only have two kids, but definitely a consideration if you haven't completed your family."