Tecfidera for Multiple Sclerosis User Reviews (Page 4)

• MeA...
• Taken for 6 months to 1 year
• February 4, 2025

"Got diagnosed with MS in earlyish 2024 when I was 15, took my first 120 mg pill in early April. My scalp felt like it was burning that first time. It didn't really hurt but felt really uncomfortable and hot. I forgot the exact instructions, but my instructions for my pills were: 120 mg in the evening and morning -> 120 mg in the morning, 240 mg in the evening -> 240 mg in the morning and evening, and that's what I'm still currently doing. I asked my doctor what I had to do with the 120 mg of pills I still had left over, and she said I was allowed to take 2 in one go to make it 240 mg. I'm still taking them, had an MRI scan in January 2025, and they said that the medication is working great and that there's no new flares. I have no complaints; there's no weird aftertaste or anything, it just tastes like nothing, unlike iron supplements. Apologies if there are errors in my review, it's midnight and I'm not a native English speaker. Thank you for reading about my experience."

• Kay...
• Taken for 1 to 6 months
• March 23, 2018

"Started 2 months ago on Tecfidera after being on shots for 15 years. Nausea and extreme flushing and itching after the pill. Seemed to subside somewhat. Having trouble with holding bladder, which I never had on shots. Also, a light cough every hour on the hour. Anyone else have these side effects?"

• Anonymous
• Taken for 2 to 5 years
• May 23, 2017

"Diagnosis with MS in 2010. Initially started on Avanox. Hated giving myself injections, and the pen-activated injection was absolutely stupid for my fear. After having three strokes, aided in the complications. Then started on Tecfidera. As I told the neurologist, everything above the shoulders has gotten better, and everything below the shoulders has gotten worse. Interesting is I was diagnosed with a blood clotting disorder as well. Took Lovenox for this at first and no MS medication. I actually did better."

• mar...
• Taken for 2 to 5 years
• January 1, 2017

"This chemical nearly killed me! Question: Is this drug in the same category as the biologics? If so, then I am not surprised. Like Humira, Xeljanz, Opdivo, Methotrexate, et al; I can 'see the writing on the wall,' in a manner of speaking. I hope not to see an entirely new year of people who are injured by an entire nation of people too impatient with the same period of time it'll take for the 15 to 20 years of strict FDA latitudinal/longitudinal double-blind studies necessary to ensure all side effects are able to be minimized as humanly possible. For me, with my history of strict regimentation of timing my own medications, I came within 96 hours of loss of life due to a 3-organ-system failure. These things are like rat poison!"

• Sue...
• Taken for 10 years or more
• November 29, 2024

"I have been taking Tecfidera since 2014/15, and main side effects have been flushing, especially if I miss one. But for the past year or so, I have had really bad sensitivity in my head, including bad itching, and it has only just dawned on me it could be because of my long-term medication."

• Mar...
• Taken for 2 to 5 years
• January 11, 2022

"I took this for over three years. Until the last year, I did great on it. I could take it on an empty stomach. Hair loss was minimal. In year three, my lymphocyte count was too low, and I was taken off of it. I had no new lesions while on it."

• Nea...
• January 26, 2016

"I'm only new to this condition and the medication. Five weeks I have felt so sick with stomach pains, but my doctor gave me gastritis tablets, which have helped a lot. Not sure when the best time to take my medication is. Could I make the itchy redness go away, or does it matter?"

• SMa...
• Taken for 5 to 10 years
• February 2, 2021

"Been on Tecfidera for 7+ years. When I first started it, the ramp-up from 140 mg to 240 mg was too fast. Got really sick. So I told my Dr. I wanted to taper it. I took 140 mg 2x a day for a month+, then moved to 140 mg in the AM and 240 mg in the PM for 2+ months, then I finally got up to the full dose in about 4 months. Seemed to work. No new lesions and minor flushing. BUT after only 12 months on it, my lymphocytes dropped from my normal 2.0 to as low as 0.4. They have hovered around 0.5 - 0.8 for years now. The Dr. and Biogen keep saying as long as they don't go below 0.5 for 3 months it's fine. I have always been worried about PML and now COVID. In the recent 12 months, I have been considering going off it. However, I have heard even if you do, they do not come back to normal? I know most MS drugs will lower your WBC."

• Alo...
• Taken for less than 1 month
• January 18, 2022

"I was diagnosed with CIS (transverse myelitis + positive oligoclonal bands) 7 months ago. I started taking this medication 2.5 weeks ago. First week on a low dose, and from the second week, a higher dose. I must say I was very scared of all the bad (short-term) side effects described here by users. For me, I haven't had any single side effect (at least yet) except for diarrhea, just a bit annoying, but I hope it will go away as soon as my body adapts. Occasionally, I feel like my scalp feels a bit hot, but I never got the flushing, and I am not sure if this is not just CIS symptoms that remained. I will get the monthly blood checkup and hope my values are all good to continue this medication. I just hope my CIS never develops into MS and this medication helps to prevent this. My neurologist suggested considering stopping medication if no new lesions appear in the next 2-3 years. This would be ideal as I am worried about long-term effects (e.g., higher cancer risk which was observed in vivo)."

• uth...
• Taken for 1 to 2 years
• June 25, 2022

"Multiple Sclerosis: “I was diagnosed with MS in June 2017 and was prescribed Tecfidera in 2019. I was fine on the initial 120 mg dose, but once I had to take the 240 mg dose, I started having severe GI issues... vomiting, diarrhea, cramping... lost a lot of weight/body fat rapidly within a few days and could barely stand up by the end of the day. So with medical advice, I stopped taking the Tecfidera for two months until my body got back to normal; then MS nurses gave me 120 mg capsules for a week longer before increasing to the 240 mg dose; and this time I started to take it with a meal with saturated fat content: using the 'Overcoming Multiple Sclerosis' Diet so I compromised (cashew nuts/soaked chia seeds/very small egg). Resulted in a better response: I've not had any significant new lesions up to the last scan. I do get tingles, itchiness, etc. if I forget to include fats, etc. However, now, after a year, my 3-monthly blood tests have been monthly for the last three months as one count is lower..."

• Sta...
• Taken for 10 years or more
• May 30, 2025

"I got diagnosed August 2012. I was 38. Woke up blind in both eyes. Was dying and rapidly losing weight. Went from 140 lbs in November to 90 lbs in February. Thank God Tecfidera came out in March. My Dr. said new drug, let's try. I have been on it now going on 13 years!!! Brief side effects for the first couple of months. Then nothing at all. It has been a great blessing!! Unfortunately, I just had my yearly MRI, and there are new lesions on my brain and spine. So very sad. My Dr. wants me to try infusions. I am not happy. Thank you so very much Tecfidera, you have allowed me to live and spend so many wonderful memories with my family and friends. Wish there was an advanced version. Remember everyone, you have MS, it does not have you. Stay strong and healthy out there."

• Don...
• January 24, 2014

"Tecfidera has made sure I have not had any more lesions."

• Lma...
• February 17, 2015

"No relapses. Extreme hair loss. Annoying flushing side effect, but it's working."

• kde...
• Taken for 5 to 10 years
• November 7, 2023

"Been on Tecfidera for 6+ years. Still experience flushing, but that is a small price to pay, considering the other MS medications I have been on in the past."

• San...
• Taken for less than 1 month
• April 29, 2015

"This drug made me so sick with flu symptoms that my doctor agreed to stop it after only three weeks. My MS symptoms became debilitating and improved soon after stopping the medication."

• New...
• Taken for 1 to 6 months
• October 27, 2019

"Flushing and itching on the first day. Taking baby aspirin and 24-hour non-drowsy Claritin. No more side effects. Always take at the end of the meal."

• Tho...
• July 24, 2015

"Drug seems to work well. I had the flushing bouts in the first month, lasted all of 10 minutes. This is the only drug I have been on since being diagnosed in 11/14."

• Sas...
• October 20, 2020

"Love this! Minimum of side effects, hope this will work for years!"

• Anonymous
• May 20, 2017

"So far, so good. Minor side effects that are tolerable. A little itching, some flashing, but not bad at all compared to the side effects of Avonex, which I lasted 3 months on."

• Ldy...
• Taken for 1 to 6 months
• July 23, 2019

"Diagnosed with MS in 2015. Tecfidera is my second MS medication, the first was Copaxone 40 mg, no side effects so far except very mild flushing with my first pill. Been on it for 2 months."

• Nik...
• Taken for 6 months to 1 year
• January 9, 2020

"I was diagnosed in September 2018 with MS and started Tecfidera. I was symptom-free for a year, but the doctor says I got a few more lesions, so they want to change to Gilenya. I'm scared."

• Min...
• March 27, 2017

"The only thing I am worried about is progressive multifocal leukoencephalopathy (PML). I hope it will never come to me."

• gee...
• March 3, 2018

"Had a lot of hair loss in the first three months. Then started to have shock sensations of the head and body in the third month. I totally stopped taking it at that point."

• Luc...
• Taken for 6 months to 1 year
• February 6, 2016

"I have been taking Tecfidera for approximately one year and have had no flushing, but it seemed to have taken six months to begin its anti-inflammatory effect."

• bud...
• Taken for 6 months to 1 year
• March 5, 2020

"certainly not the most comfortable medication in terms of side effects; joint ligaments discomfort, hip, evil."