Fingolimod and Headaches: What Users Say

• apr...
• Taken for 6 months to 1 year
• January 31, 2015

Fingolimod for Multiple Sclerosis "After 3 years of Rebif, I couldn't poke myself anymore! I was then on Tysabri for 2 years until my JCV test came back positive. I am now in 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' $0 copay program, so my portion is nothing!"

• Anonymous
• September 15, 2011

Fingolimod for Multiple Sclerosis "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."

• My ...
• May 13, 2013

Fingolimod for Multiple Sclerosis "Very easy to take a pill form of 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 the doctor next week."

• Amm...
• October 23, 2016

Fingolimod for Multiple Sclerosis "I have been taking Gilenya for the past six years. It has been the only medicine I have been on for MS. I thought it was a great option for the first few years with very few side effects and only one relapse per year. Then my hair started thinning and the headaches and fatigue got really bad. Now it no longer seems to be working. Last MRI showed several new lesions, and my doctor said the drug is doing little to nothing for me. He wants me to switch to Tysabri, but hearing the risks for that terrifies me."

• MCD...
• January 12, 2016

Fingolimod for Multiple Sclerosis "I had this MS since 2007, so it's almost a decade now. Before I was on Betaseron, and I kept on getting on and off MS side effects. Since there was no improvement on the lesions, my doctor asked me to change it to this oral pill daily, which I was quite thrilled about as I don't need to take injections, although there's a possibility it reduces the heart rate. Surprisingly, until today, I did not get any side effects other than headaches, and when an MRI was done, there were no new lesions. So, I'm quite happy and grateful this medication works for me."

• Ste...
• Taken for 2 to 5 years
• July 10, 2017

Fingolimod for Multiple Sclerosis "Gilenya worked wonders for me the first 18 months. I felt great, MS stabilized. Then I started slowly getting worse: fatigue, dizziness, bad headaches. Still no MS progression or relapses, but I felt awful! Elected to take the chance to come off the drug and try another just to feel better. Within 6 days after stopping G, I felt amazing, no more fatigue, no headaches, and the dizziness has eased. At day 18 off so far, and I continue to feel better each day. Clearly does its job, but at the expense of my life-it just wasn't worth the side effects."

• Anonymous
• Taken for 1 to 6 months
• November 29, 2015

Fingolimod for Multiple Sclerosis "I took Gilenya 3 years ago for about a year and had no major side effects and only had 1 additional lesion on my brain post-treatment. My husband changed jobs, and it took about another year to jump through all of the hoops to restart the Gilenya. I restarted the Gilenya last summer. Immediately, I started having trouble with more severe headaches, losing hearing, anxiety, until my neuro took me off it. I wish it had worked."

• Sar...
• Taken for 2 to 5 years
• February 26, 2019

Fingolimod for Multiple Sclerosis "I have been on Gilenya for about 3 years. I suffer from aggressive RRMS and was not a candidate for Tysabri due to the JC virus. The first 6 months of Gilenya, I had on and off headaches, which were more of an annoyance than extremely painful. Testing to be put on the drug can be intimidating and scary, the benefits outweigh the risks, though. I do find you are quite tired when you add Gilenya into the mix, I guess nothing is perfect. I did have a tiny lesion (small flare) show up when I first started Gilenya, the MRI was done within 6 months of starting the medication, so I'm assuming my body took some time to become accustomed to it. I haven't had any progression show up since and have been lesion-free the past two years of using it!!! Meds seem to be doing their job, just wish I didn't have the fatigue tacked onto my MS fatigue."

• Anonymous
• January 26, 2011

For Multiple Sclerosis "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."

• Mar...
• June 21, 2017

Fingolimod for Multiple Sclerosis "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."

• Anonymous
• Taken for 1 to 6 months
• October 4, 2017

Fingolimod for Multiple Sclerosis "Hair loss, persistent headache."