Dimethyl fumarate for Multiple Sclerosis User Reviews (Page 4)

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

Dimethyl fumarate "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!"

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

Dimethyl fumarate "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."

• DRW...
• Taken for 10 years or more
• November 26, 2023

"It's been fine. I do have occasional flushing, which is unpleasant but not long-lasting. Taking a tablespoon of peanut butter 15 minutes before taking the pill usually prevents the flushing. My MRIs have shown new lesions for 10 years, so that is an indication that it's working. I have no side effects besides occasional flushing."

• Fil...
• Taken for 1 to 2 years
• August 14, 2020

"I was on dimethyl fumarate for a little over a year and had nothing but issues. GI issues made it nearly impossible to eat, and I was put on a steroid that I had a different reaction to. Flushing was a major issue, and 1 baby aspirin was not helping, so I had to take 2 every dose...4 a day. My blood was so thin that if I did much as grip a pen too hard, I got a bruise. Sitting in class and lightly bumping my knee on the table? Bruise. Go swimming with my dog and her paw catches my leg? Bruised. I had so many bruises that people asked if I was being abused at home. I was miserable. Then, to make matters worse, my neurologist didn’t even remember prescribing this drug to me. He only uses it for patients who also have psoriasis. Go figure. Thank goodness I didn’t pay for it because of copay assistance."

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

Dimethyl fumarate "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."

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

Dimethyl fumarate "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."

• Nea...
• January 26, 2016

Dimethyl fumarate "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?"

• Scs...
• Taken for 6 months to 1 year
• December 8, 2023

"Everything seems to be going okay. I do get the flushing feeling, but not every time I take it. Sometimes the flushing hits me within 30 minutes, and sometimes it hits me a few hours after I take it. I personally love the days when I have no flushing. I will take what I can get."

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

Dimethyl fumarate "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)."

• Sun...
• July 10, 2016

"I have taken Tecfidera for about 2 years. I have had anemia a few times but nothing serious. I have had hair loss since I took the pill. I am taking the twice-a-day 240 mg version of the pill. My doctor has not seen any more bigger lesions. The ones that I have are still there, so they have not gone away. I took Gilenya for a year and did not tolerate it. I was like a robot. I would go the whole day without remembering what I had done. It also made my heart beat fast. My heart beats fast on Tecfidera sometimes and I have only had one panic attack. It was an adjustment to get on the Tecfidera, but I think it helps. It is definitely not the cure. I have had fewer attacks, but I am not working, so I am not sure if it is the medicine."

• Sup...
• December 8, 2021

"I have been on Tecfidera since June. It's December now. So that's what, 6 months. The beginning, the flushing was BAD. VERY BAD, but after about month 3, they went away. I am sure to take it during meals, not sure if that helps with flushing, but that's how I do it. It's pretty hard on my energy level, but this is my first MS med. My follow-up MRI showed no more lesions. No less, but no more. So I'm looking at that as a plus. I have RRMS, diagnosed in May 2021."

• Fri...
• February 15, 2016

"DMF has already been used for longer than 35 years for treating psoriasis in Germany. It is an excellent medication if you use it right. In its basic form, it is extremely cheap. The warnings for the brain disease are correct and caused by low lymphocytes, but this situation is easy to circumvent. The protocol that is prescribed by the producer is far too quick. You should do a much slower buildup of the medication. During the buildup, there should be a very regular check on the lymphocytes, and also when you are 'leveled,' you should have your lymphs checked regularly until you are sure that you are stable. Furthermore, taking the medication intermittently, 5 days of meds vs. 2 days of no meds, is far more effective."

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

Dimethyl fumarate "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..."

• dis...
• January 22, 2024

"I have been on this for about four months with some gastrointestinal issues, and flushing, but it's bearable. Now my issue is with Medicare Advantage plan that just denied my coverage! Why am I paying for a plan that denies every claim? Sent my neurological NP a text requesting an intervention."

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

Dimethyl fumarate "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."

• Dim...
• Taken for 2 to 5 years
• January 3, 2024

"Originally I overdosed on this med. This was years ago, so I'll recall as best I can. On my first 'Starter Pack', half-strength for the first week/month? But because the guy explaining it (I think English was his second language), he said 'No! You take TWO in the morning, two at night.' So that's what I did. I doubled the dose and had maybe one loose stool and also itchy red blisters. I wasn't alarmed. I knew they'd subside in time. I only realized when I ran out that I timed it to be running out on the evening dose, but it was the morning dose. Plus, it was like 12 days instead of a month. When I called to ask why, the nurse got to the bottom of our misunderstanding and said 'Sweetie, you've been taking 240 twice a day instead of 120'. I did tell my neurologist. But the effects of 'overdosing' were negligible for me."

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

Dimethyl fumarate "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."

• Emm...
• Taken for 10 years or more
• April 6, 2025

Dimethyl fumarate "I was diagnosed in 2014. Started on Copaxone, and lesions were enhanced on the first MRI. Switched to Tecfidera and have had no new or enhanced lesions or worsening of symptoms for 10 years. No real side effects, but my lymphocytes are on the lower end of the acceptable range. Dr. had me skip 3 doses a week, and my numbers are sneaking up a little."

• MS1...
• Taken for 10 years or more
• March 27, 2025

"R&R MS diagnosed when 46 years old - recommended injectable. Rebif and Copaxone. Rebif gave me flu-like symptoms every other week, and my liver count went through the roof. Taken off it and went on a trial of Tecfidera in 2013, and I've been on it ever since. In that time - everything is going well. No attacks, very few symptoms...2025 - until I started getting pain in my chest - waking me up at night and only relieved if I drank water and stood up. Had a gastroscopy that revealed very little except redness. Wondering if I should give it a break or try something new."

• Bar...
• Taken for 2 to 5 years
• October 24, 2023

"I was on Tecfidera, the brand name for Dimethyl Fumarate, starting 15+ years ago. My insurance forced a switch to the generic. I've used the generic for years. The only side effect I ever had was flushing. That doesn't happen very often now. My MS symptoms have been stable for years now, no exacerbations for roughly 10 years."

• Pet...
• Taken for 1 to 6 months
• January 15, 2021

"The only noticeable side effect was occasional flushing that went away after a few minutes. I had to stop taking this as my lymph count dropped below 500. Waiting for my levels to return before trying something else."

• Don...
• January 24, 2014

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

• Lma...
• February 17, 2015

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

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

Dimethyl fumarate "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

Dimethyl fumarate "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."