Generic Name: Tecfidera for Multiple Sclerosis (dimethyl-fumarate)
Tecfidera for Multiple Sclerosis Reviews
"MS diagnosed in 1996. Used Avonex but had a bad reaction. Still have MS exacerbations, involuntary movements of my arms & legs, and flu-like symptoms. Switched to Rebif in 1998, now get the flu there times a week, and still had involuntary movements of my arms & legs. Used it until 2013, when my neurologist suggested Tecfidera, which I still use with zero side effects ever - none at all. Now, I can walk about 6 miles every other day, and I am 62 years old."
"I was put on Tecfidera 5 years ago to change from 5 years of daily Copaxone injections. Initially, I was fine with it. At year 4, side effects attributed to the medication began. Sinusitis and headaches started. Medications to treat these issues did not work. Then came the skewed liver function tests. Since long-term and untreatable liver damage would occur, I was taken off of it. Now that I have been off Tecfidera for 4 months, I am healthy again. I was diagnosed 10 years ago, and my repeated MRI and testing show no new lesions or inflammation has ever occurred during this time. Sometimes I wonder if I really do have MS."
"I've been on this for 1.5 years. I had no issues from the beginning. No new lesions since diagnosed. No stomach issues. My arms will itch every now and then. There are people that are like me and don't have any problems. If you are trying to decide on this drug, know that."
"I have been on Tecfidera for 8 months for MS and have decided to stop. Since taking it, fatigue has gone through the roof to the point I can't work anymore. Also, I had hair loss, which is not a noted side effect. I felt better when I was taking nothing (previously on Avonex). We all react differently, but I just feel a break from any drug is worth a shot to see if life improves. Good luck, everyone."
"It's really sad that a medication that is needed for somebody suffering with MS costs so much. My mom can't afford it, and there are no grants available. Sad that she will now suffer because pharmaceutical companies are greedy."
"I was diagnosed in March of 2019 with MS and put on Tecfidera in August. The pain from the burning for hours is terrible. It's NOT a flushing feeling. It's burning. My scalp, chest, armband, back area. Told my neurologist and he said stay on it a while longer to get adjusted to it. But the burning feeling won't let you. Something is wrong with those ingredients. No medication should add to your problems that bad. Praying for another medication for all MS patients to get some relief."
"I’ve been on Tecfidera since October 2016. MS diagnosed 2006. Been on Copaxone, Rebif, Gilenya, Tysabri. I’m now Secondary Progressive MS (not even 50 years old yet). For the first year on Tecfidera, my side effects that I had were severe flushing, rash, and itching, which lasted about 2 hours after each dose. I was told by the neurologist to chew half to a full baby aspirin with each dose to help with the Tecfidera side effects, and it worked - NO MORE FLUSHING or ITCHING. For the past two years, I’ve been able to reduce the amount of aspirin to about a 1/4 baby aspirin per dose. Sometimes I can go without it for a day or two. But the chewable baby aspirin (84 mg) works like magic to take away the severe flushing, rash, and itching. Also, I’ve only had one exacerbation since being on Tecfidera, and it was mild. Such a huge relief because I had exacerbations every 12-18 months previously. I’m not switching off this as long as it keeps working. Especially during this pandemic! No way I’m going in for infusions."
"Don't take it! Side effects are miserable. Felt like I was better off dead. Over a year I hung in there because my neuro said give your system time to adjust. Don't listen to them. Gastric issues, flushing for hours. My body is on fire and I'm sick as a dog like you have the flu. Made my body hurt. Take something else. Trust me."
"It is my 1st medication since diagnosed in 3/13. Just had my 14-month check-up MRI. No new lesions. It is hard to adjust to for some people, but if you stick it out, by month 3 it starts to get better."
"PML (Progressive multifocal leukoencephalopathy) side effect? My mother almost died from PML. After contracting the virus, she then contracted IRIS. She was on a feeding tube and had a week to live. It's a miracle she is still with us. She's still alive, but this 56-year-old woman has spent the last three years relearning how to do basic life skills. She can barely walk or talk. She needs constant one-on-one care. There needs to be a better option for people with MS."
"I was taking Tecfidera for about 2 years. I regularly had my white blood cells checked. They dropped below 1, and the doctor took me off and no medication until the white count comes up. After two years, my white count has not improved. Still no MS medication, luckily, no new flare-ups of my MS. If you take this medication, please keep a check on white blood cells."
"Been on Tecfidera since May 2013. Was allergic to Copaxone, so was on Rebif for years. Pill is so much better. Side effects of flushing, burning last only 10-15 minutes during the first month or two of starting the pill. Cold washcloth and relaxing helps during the flushing. Working so well...no new lesions. I drink a lot of water and eat protein when I take the pill. Highly recommend trying!"
"I have been on Tecfidera for 5 years. The only side effect I ever have is flushing. I always take the pill with a full meal. The flushing normally comes on if I eat lunch. Maybe eating once the pill is fully in your stomach reacts with the lunch, I'm not sure. Overall, even the flushing is normally minor and goes away after 10 mins. I have had no flare-ups in the five years I've been on the med that I know of."
"I was diagnosed in September 2012. I started on Copaxone with relapses and cognitive issues. After about 6 months, I started Tecfidera. I initially had the flushing, which went away after about 6 months. Some hair loss, but I have thick hair. No new lesions or relapses since I started Tec! It was a miracle drug for me! No issues or problems since."
"Been on this medicine for two months, and it's worse than having a baby and toothache, the severe stomach cramps, hard time breathing, and bowel movements. I asked my doctor to take me off this meds. I've been very sick since taking these meds."
"Been taking Tecfidera for my MS about 4 months, been having hot flashes, very little stomach discomfort, but my huge complaint is my hair is falling out. It’s pretty bad and very upsetting from a woman’s standpoint. Trying to switch from Tecfidera, which was my first MS drug - I was diagnosed in July. The hair loss is not a common side effect, but I think it needs to be added to the list!"
"This is the 3rd drug I’ve tried for RRMS (Relapsing Remitting Multiple Sclerosis). About 5-6 weeks into taking it, I did start to notice the facial flushing. About 3 hours after taking a dose, my face would turn red, then start burning and itching for about 20 min. I also had stomach cramping and nausea. Taking Aspirin 324 mg chewed and taking the 1st dose after 9 am with a snack helped reduce those symptoms. After taking this drug for 3 months, I suddenly developed severe joint pain and swelling that limited my movement. The pains were there when I woke up and would resolve in one joint and present in another throughout the day. I’ll be leery of these drugs from now on. Background info-I take VitD 50,000 iu weekly, B-12 500 mcg daily, and Align daily. I am a runner and a nurse."
"I've been off and on this medicine since 4/2013 (not because of side effects, but because I had two babies). This is the only medicine that has effectively helped with my MS. I have had two MRIs, and I have no new or enhancing lesions. The existing ones I did have have healed. I had side effects for the first month, but eating a fatty meal and taking an aspirin decreases them. I have no side effects now, and I've been back on since 10/14. Just make sure you get your white blood cell count tested every 3 months."
"I was diagnosed with MS in June 2014 and was prescribed Tecfidera. 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...similar to food poisoning. I couldn't even keep water down. I stopped taking the Tecfidera for two months until my body got back to normal; then had my neurologist prescribe me one month of the 120 mg capsules before increasing to the 240 mg dose; and started taking Singulair with my morning dose. It is also essential that I eat a substantial meal with fat and starch before taking the Tecfidera. I've not had any new lesions since. For me, it's a great med as long as I can manage the GI side effects."
"I was diagnosed 13 years ago with RRMS, started on Rebif, which nearly killed me. Crashing blood sugar, 34, passed out at work. Was on Copaxone for 12 years, all going well, until insurance said they would no longer cover. Put on Tecfidera. By week 2, vomited, severe cramping, pounding headaches, thought I was having a stroke. I stopped. My doctor wants me to try again, claiming I did not give it long enough to get over the hump of the negative side effects. When the side effects are worse than the disease it treats, I am very cautious. It just doesn’t feel right. I’m speculative as to why my doctor is pushing this drug so hard when it made me feel so bad. Is it time for a new doctor, not just a new drug?"
"I was diagnosed with MS about 3 months ago. My MS is mild, so I could try weaker drugs, which are usually injections (every other day). But I hate needles, so my doctor prescribed Tecfidera for me. It has been really good for me so far, with almost no side effects."
"I have been diagnosed since 5/13. I have been on Tecfidera, osteoporosis the whole time. I have had no growth in my lesions and no new lesions at all. I was recently taken off my meds to see if I have any relapses and where my disease is. I feel like this is a wonderful medication. Also, they had a program to make the meds reasonable or free if needed. Would definitely refer to this medication. My cousin used to have to go get 5-hour treatments for her MS. Grateful this kind of med is out there."
"I started tecfidera 3 years ago. After three month I felt pain in muscles . My dr said this isn’t a side effect. For the past year I have been dealing with so much body ache that I had enough and stopped tecfedera 3 days ago , I will let you guys know if I feel better by time."
"This medication is truly amazing. I have been taking Tecfidera for over two years and have had no new flare-ups, only mild symptoms of MS (tingling, slight numbness). Taking a pill is much better than injections that cause flu-like symptoms. The only side effects I've experienced are flushing (which stopped for me after about a week, but comes back if I miss a dose) and occasional diarrhea, which is inconvenient but manageable. I highly recommend it to anyone with RRMS. Though expensive, there are assistance programs."
"First, it's not a shot! Second, side effects are easily controlled (eat something with some fat content, take allergy meds and baby aspirin before taking Tecfidera). If side effects occur (flushing), it goes away quickly (15 mins or less). I was on Rebif before and changed to Tecfidera about a year ago. Have seen no lesion activity in the last few years (MRIs)."
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