User Reviews for Tecfidera
Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.
For Multiple Sclerosis: “I am into my 3rd week taking Tecfidera. Was on low dose (120 mg 2 x a day) for week. Into 2nd week of 240 mg 2 x a day. Joints stiff and sore but legs very painful - back (hamstring) & front (quads) & sides of legs (around IT band), calves. Feel shooting sensations down right leg mainly. Walking become very painful. I wonder if anyone else has experienced these symptoms - not sure if it is a side effect, MS or sciatic-type issue. Anyone with thoughts on this?”
For Multiple Sclerosis: “I was diagnosed 12/2018 with RRMS first I was on copaxone I developed and allergy then doc put me on Beta seron which gave me perminant lepord spots at injection sites. Them I tried Ocravis but with the pandemic my new neuro took me off and put me on tecfidera. There is flushing and itchy skin about 2 hrs after. My face is goes full tomato red. The stomach pains only happen once in a while usually if I have an empty stomach. For me it has worked very well, my energy level increased 100% since being on tecfidera. All in all I am happy with it.”
For Multiple Sclerosis: “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 day for a month+, then moved to 140 mg in AM and 240 mg in PM for 2+ months then I finally got up to 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 keeps say as long as they don't go below 0.5 for 3 months its fine. I have always been worried about PML and now COVID. In recent 12 months 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.”
Frequently asked questions
- How do Vumerity and Tecfidera compare for multiple sclerosis (MS)?
- Can Tecfidera cause stomach damage?
- What are the new drugs used for multiple sclerosis (MS)?
- Is Tecfidera an immunosuppressant?
- Can I stop taking Tecfidera? What happens if I do?
For Multiple Sclerosis: “MS diagnosed own 1996; Used Avonex, had bad reaction; still have MS exacerbations, involuntary movements of my arms & legs, and flu; switched to Rebif in 1998, now flu there e tomes a week, and still had involuntary movements of my arms & legs. Used until 2013, we my neurologist suggested Tecfidera which I still l use with zero side effects ever. None at all. Now I bene walk about 6 miles, every other day, and I am 62 years ols.”
For Multiple Sclerosis: “I've been on this for a 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.”
For Multiple Sclerosis: “I have been on Tecfidera for 8 mths 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 worth a shot to see if life improves. Good luck everyone x”
For Multiple Sclerosis: “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.”
- Can you drink alcohol while taking Tecfidera?
- What causes flushing with Tecfidera?
- How long can you take Tecfidera?
- Gilenya vs Tecfidera. How do they compare?
- Does Tecfidera cause weight gain or loss?
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “Dont 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.”
For Multiple Sclerosis: “Its 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 grant's available. Sad that she will now suffer because pharmaceutical companies are greedy.”
For Multiple Sclerosis: “It is my 1 st 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.”
For Multiple Sclerosis: “PML (Progressive multifocal leukoencephalopathy) side affect? 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.”
For Multiple Sclerosis: “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 50yo yet). For 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 neurologist to chew half to 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 (84mg) 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 it keeps working. Especially during this pandemic! No way I’m going in for infusions.”
For Multiple Sclerosis: “I was taking Tecfidera for about 2 years. I regularly had my white blood cells checked. They dropped below 1 and dr took me off and no medication until 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.”
For Multiple Sclerosis: “Been on this medicine for two months and it worst than having a baby and tooth ache, 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.”
For Multiple Sclerosis: “I started taking Tecfidera about 3 weeks ago. I started on the lower dose of 120 mg twice a day for 7 days. I experienced pretty bad flushing the first day, but it didn’t really bother me. I compared it to using tingle tanning lotion. I also had bloating, but again nothing too bad. After 7 days I started taking 240 mg twice a day. I felt okay for the first few days. The bloating got a little worse, and I did have stomach pains 1 night, but I thought maybe I ate something bad. Fast forward to a week later, and I begin having severe stomach pains/ cramping and bloating. It started early Friday morning (woke me up), and is continuing. Nothing helps the pain. Not Kaopectate, GasX, Tums, extra strength Tylenol, nothing. I’ve barely slept at all this weekend because the pain is so bad. I decided to not take any more of the medicine until I speak with my doctor. I read the side effects will subside, and I really tried to tough it out, but I can’t handle the pain anymore.”
For Multiple Sclerosis: “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?”
For Multiple Sclerosis: “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 stand point. 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!”
For Multiple Sclerosis: “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. Over all, 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.”
For Multiple Sclerosis: “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 20min. Also had stomach cramping and nausea. Taking Aspirin 324mg chewed and taking the 1st dose after 9am 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 50,000iu weekly, B-12 500mcg daily, and Align daily. I am a runner and a nurse.”
For Multiple Sclerosis: “Been on T. 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 wash cloth 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!”
For Multiple Sclerosis: “Have had MS for over 15 years. Started with betaseron..which was like having the flu for 8 years straight. Switched to Tysabri, which I loved. I had no side effects, but sadly got JC virus so switched to Tecfidera. Been on it for 3 months and I have to quit. The constant itching and joint pain is bad, but the burning and sharp stomach and intestinal pain is too much on top of the nausea and vomiting. I don't know what I'll be on next but it can't be worse.”
For Multiple Sclerosis: “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.”
For Multiple Sclerosis: “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 MRI's and I have no new or enhancing lesions. The existing ones I did have, have healed. I had the 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”
For Multiple Sclerosis: “I was diagnosed in September 2012, Started on compaxone with relapses and cognative issues. After about 6mths I started Tecfidera. I initially had the flushing which went away after about 6mths. 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.”
For Multiple Sclerosis: “I was diagnosed with MS in June 2014; and was prescribed Tecfidera. I was fine on the initial 120mg dose, but once I had to take the 240mg 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 240mg 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, its a great med as long as I can manage the GI side effects.”
For Multiple Sclerosis: “Been on tecfidera for 6 months now. Had noticeable flushing at the start but nothing unmanageable (tried to think of it as a funny thing). Can take it now without food and have a slight feeling of flushing but not much. Not sure if it's working but easy to take and glad I choose this over avonex (side effects wise). I would recommend this from my experience but everyone seems to react differently.”
For Multiple Sclerosis: “Hands down the worst horrifying medication I have ever took!!! Took for 6 days, trial pack thank god was smart enough to stop taking. 1st day trouble swallowing, lips swelled. 2nd day swollen lips , unbalanced, 3rd day all the above plus excruciating neck, head severe pains and redness right cheek. 4,5,6th day massive pain around right eye, right ear, right cheek. All I was told 5 out of 6 days was "it will get better keep taking it" by neurologist and tecfidera!! Was losing vision in right eye in 3 days, that was May 2019 and now it July 2019 still having eye issues, swelling if right check, redness on right cheek. Have been taking benadryl since May . I have also had 2 steroid shots once in ER , 2nd in Drs office pcp. There is more and I am beyond livid. I want to be compensated from May and into the far future. Considering 1 of side effects is lip swelling to be told to keep taking it shame on you!!!!”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
More about Tecfidera (dimethyl fumarate)
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- Drug class: selective immunosuppressants
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