Tecfidera and Flushing

Sunburn? No.
Extra hard work out? No.
Embarrassed? Eh, Kinda

Jackie, why is your face so red? I wish I had a dollar for every time someone asked me that. The answer? Flushing from Tecfidera. I swear the temperature of my skin raises 20 degrees when my skin starts to flush, and not only is it hot but it gets red. We’re talking like I sat in the sun slathered in baby oil for 10 hours red. Not only it is extremely uncomfortable, but its also pretty embarrassing. In the beginning I had to explain to everyone in my life why I was all of a sudden imitating a ripe tomatoe, and I am really fortunate to have some great people in my life who took my explanation and left it alone. Now every once in a while I have a coworker who says, “your medication is acting up again”. Even though I obviously know when its happening because the temperature inside my body skyrockets (how could I not know?!), I still take it as a sign of their understanding and concern. I have some wonderful coworkers who accept all my health issues and weird medication quirks. Most of the time I just slump down at my desk and try to wait it out so I can avoid the strange looks from those who are not on my work team. I try to avoid mirrors so I dont have to see how absurdly red my face/neck/shoulders/arms are. In fact I just got up to head to the bathroom and I passed some people in the office who stared as I passed. I got into the bathroom and audibly said “Oh my god” because my face and chest are fire engine red right now. I can’t blame them for staring…I’d look too.

I was told by my neuro that flushing would stop within a few months of starting Tecfidera. It didn’t. I was told that if I ate 30 minutes before taking the pill that it would help. It didn’t. But you know what? I’ll take this obnoxious flushing for 15-20 minutes over heart complications with Gilenya (which I had), or injection site welts (from Betaseron) and the burning (from Copaxone). For me, so far, Tecidera is the only medication that has had so few side effects. Frankly, I’m pretty happy that this is the biggest of my medical problems right now. After my history, a little flushing seems like a piece of cake.

Also, this might be a stretch but I tend to think that a little bit of flushing is good for my psyche. When my skin is flushing like this, I am wearing my disease (or at least part of it) on the outside. People can see what’s happening to my body. They question, they stare, they inquire. It is a friendly reminder to be thankful that I don’t have to wear my disease on the outside all the time. On the flip side, its also a chance to raise some awareness. Like I said, I have great coworkers and I’m sure that when I started on the team they had no idea that I’d be talking their ears off about living with MS and ulcerative colitis. But when my skin flushes there is really only one course of action. To educate. I explain to them what Tecfidera is, and why I take it. Now I can’t educate everyone who sees my beat red face but each person I reach is just one more who can understand us a little bit more. I try to use every situation I’m in as a chance for awareness, education and advocacy. Sometimes that means dropping off a flyer or mentioning a website, other times it means walking around like a giant red billboard.

Do you take Tecfidera? Does your skin flush the way mine does? What other side effects do you have from your medication?

Only your doctor can prescribe prescription medicines for you. Do not stop taking any medicine without speaking to your doctor. If you experience new or different symptoms or side effects while taking methotrexate, please make sure you discuss them with your doctor immediately.

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Comments

View Comments (24)
  • PLang
    3 months ago

    I also suffer with terrible flushing. My neurologist recommended taking a baby aspirin with the meds, then prescribed Singulair, and now a combination of Zyrtec and Zantac but none of them have helped. I’ve been on the meds for one year, and like you prefer it over the Betaseron. Still searching for a remedy!

  • spencehewitt
    1 year ago

    I know this is a bit of an old post… but thought I’d add this as I had a bit of a revelatory experience. Hope this works every time but it did this time.

    I’ve been on tecfidera for about 3 years now and was doing a last ditch search as I was just starting to get red – I can’t take any of the normal suggestions to help with the flushing because of other medications I’m on. I find the longer it takes between me starting to feel it come on and me actually turning red, the worse it ends up being. And this one was going to be BAD. So anyway, I did a bunch of reading and some things clicked. On one site someone mentioned they often go red after having coffee (caffeine) which is considered a diuretic (dries you out/increases the excretion of water from your system). I often go red after having dry foods and for whatever reason pasta. This time it was trail mix. So I don’t know exactly the connection, but I decided maybe drinking water would help. I literally chugged a whole liter (32 oz for the American folks). Craziest thing happened – I started to get chills and the redness started to subside. Chills went away, I’m still a little red, but it didn’t build up to the ‘sunburn’ I normally get. So I have no idea why it helped… but worth a try for anyone else feeling it coming on.

  • Erin Rush moderator
    1 year ago

    Thank you for sharing this information, spencehewitt! I am glad you found something that helps you feel better and combats the flushing. Thank you again for sharing and I hope this trick continues to work for you. Best, Erin, MultipleSclerosis.net Team Member.

  • JoshieSings
    3 weeks ago

    I looked up “MS flushing” and found this article. I am currently chugging a ton of water – thanks for the tip!

  • Saucygurl
    3 years ago

    Hi Jackie-
    Found your blog while researching flushing symptoms from Tecfidera. Thank you SO much for your story. I too was diagnosed with ulcerative colitis along with having RRMS. Your story could be about me! I’ve been on Tecfidera for a few months now (switched from daily Copaxone injections) and the flushing, although diminishing slightly, is still a pain in the neck when I flare up at work. I read that taking an antihistamine can diminish the uncomfortable side effects immediately and it actually worked. I’d like to know if it’s safe to do so regularly though, and will be checking with my neurologist.
    Thanks again for sharing! 🙂

  • Linda - loup
    3 years ago

    Thank you SO much for this post. It has helped me a lot. I have been on Tecfidera for a year now and I am still getting flushing. I’ve always been slim but am gaining weight due to trying to eat enough of the right food to prevent the flushing and still today I spent about an hour in the office in agony with half my body bright tomato red and burning up like I was on fire. It helps so much to hear that I’m not the only one, your methods of coping and your thoughts on why we can be thankful. Thank you again, I’ve been searching for this post for a long time, this is the first time I have found some helpful advice that doesn’t claim the side effects will wear off after a couple of months on the drug.
    Linda

  • Melissa
    4 years ago

    Jackie you made my day. It happens to me at work. Some coworkers know its my meds so of course they have to say “you are turning red.” Yeah thanks. I know. Then there are people who don’t know and in the middle of the office shout “OH MY GOD YOU ARE ALL RED?!!!” I get so embarrassed and I hide. It makes me feel better knowing someone goes through this also. I do also itch. I feel completely drained of all my energy afterwards which I don’t know why. I’m just sitting there. I’m not running a mile. In the beginning of Tec I took a baby aspirin with each dose. It cured it. I never had any flushing. Recently I had to stop taking the aspirin and the flushing happens. Sometimes I can go days without an episode. Then I will get one everyday. I have been on Tec for 13 months now.

  • jennifer
    5 years ago

    When I first started taking Tecfidera I had the flushing (and itching-oh the itching!) but was told to take two Benedryl with each dose. As you can imagine, this made me sleepy, but the payoff was worth it as it worked! Eventually I made it down to one Benedryl and an 800 mg. Ibuprofen. This combo seemed to work, and after a couple months I eliminated the Benedryl. Now I am flushing and itching free. It will be my one year anniversary on Tecfidera in April. I am in love with this drug, I was on Avonex for 14 years-until my body stopped responding to it, I then tried Copaxone and Rebif- my symptoms continued to worsen until I began Tecfidera, I swear it’s my miracle drug. Good luck.

  • Katie W
    5 years ago

    I am probably one of the few people on Tecfidera who has never had a single episode of flushing in the seven months I have been taking it. However, the nausea I am still having is unreal. I was up to 12mg of Zofran and 50mg of Phenergan, taken together every 6-8 hours. I tried taking these medications an hour before I ate, then took my Tecfidera about 2/3 of the way through my meal. This went on for several months until my neurologist put me on Marinol and Ranitidine twice daily one hour before I ate, then I take my Tecfidera halfway through my meal. I feel like I have died and gone to heaven. I am now completely nausea free and have no disabling symptoms from my late onset primary progressive MS.

    I was officially diagnosed at the age of 56, but the neurologist thinks I have been having symptoms for at least 15-17 years, but they were very mild (vertigo and hearing loss only). He told me that of the 17 patients he has on this medication, I am the only one with ongoing nausea, and the rest of them are still complaining of the continued flushing, even after being on this medication for almost a year.
    Who is it that has decided that the side effects go away after a month? The company itself? I ask because very person with whom I have spoken has had a continued problem with side effects, specifically the flushing. They seem to agree that taking daily Zyrtec or Claritin does help, but only if taken in the morning at least an hour or so before taking the first dose. And they say it helps with the itching that comes along with it.

    If anyone has any good tips for the nausea, I would love to hear them because it is embarrassing to buy Marinol at my local pharmacy when I am one of six health care providers in the county. And it makes one REALLY HUNGRY…..something I cannot afford when I am trying to eat better and exercise more. One other question….which is the best medication for the fatigue? My neurologist has offered Nuvigil, Concerta, and amantadine. Which works best with the least side effects? This is way outside of my specialty, so help me out with your opinions, please!! The fatigue is overwhelming sometimes and it takes everything I have to get up and walk the 50 feet down the hall to see a patient. I can hardly wait to sit down in the room. What is everyone else doing about it?

  • lsdearey
    5 years ago

    I started Tecfidera exactly one year ago (3/13), after six years on Avonex, two years of no DMD’s, and two months of Copaxone. At first I had the upset stomach and MILD flushing side effects, but the flushing went completely away and though I continue to have the upset stomach, it’s mild enough that it’s not too bad most of the time. And when it does get bad, my neuro has prescribed meds (Lomotil and Phenergan) for those times.

    Just recently, however, I have had recurrent flushing, along with the dang itching. It usually occurs in the morning before I take my a.m. dose. My husband gets up at 0400 so he checks my face to see if it’s red, and if it is he’ll wake me up to take some Benadryl and then I can usually sleep it off…I can’t take aspirin or any NSAID’s due to allergies. A few times it has happened during the day and since Benadryl does make me sleepy (as does Claritin, Zyrtec and any other antihistamine I’ve tried), I just suffer through it. I see my neuro in a couple weeks, and see what he has to say, but I do want to stay on the Tecfidera.

  • karen
    5 years ago

    After trying three different shots since 2007 I start on tecfidera soon. Thanks for the aspirin and claritin advice. I get flushing easy from different antidepressants and it’s been embarrassing, but I like this articles doin on it, and using it for awareness.

  • R. Makeda Adams
    5 years ago

    I’ve been going through this for about a month. I can deal with this by using a cold compress on my neck, but does anyone else have SEVERE ITCHING? I try to scratch my skin off because it feels like I’m itching from the inside…. Neck, arms and back(which I CAN’T reach). Sometimes I really miss my Copaxone, I would rather itch on the injection site then ALL OVER!

  • That's Glassic
    5 years ago

    Claritin!!!!!

  • That's Glassic
    5 years ago

    I had the same experience with my first dose. With my doctors advice, I now take 1 Claritin per day and a baby aspirin with each dose. No more flushing.

  • cw
    5 years ago

    Started Tecfidera last fall. Had to drop back down to the 120 mg/BID as it really upset my stomach. Yes I still get flushing. Cannot take the aspirin with it due to allergies. Have also tried 4 other DMD’s.

  • zane
    5 years ago

    I started taking Tecfidera about 8months ago no flushing here but I do take some aspirin with it plus other meds. that my neuro have me on for other ploblems that have popped up but at least I aint on the shots any more

  • Sandy McIntire
    5 years ago

    Been on Tecfidera since June 2013 and still have flushing. Have tried doing the low dose aspirin – no help. Tried eating light, not eating, eating a full meal, before taking it – no help. And it isn’t even like it happens all the time. I never now when it will occur and I am not really happy when it does, but it is better than some of the side effects I could suffer from with some of the other disease modifying drugs.

  • Jackie Zimmerman author
    5 years ago

    Ok this makes me feel better. I was starting to think I was the only one with this lingering side effect. It makes me feel run down when it happens, and I’m not really a fan of that but I guess I will deal with it. Thanks for commenting.

  • Curious1
    5 years ago

    Yes, I flush beet red too even after being on Tec for 9 mos, but only if I had a light breakfast. If I have food with substance, it’s usually not so bad. But on those days I must flush a little because I feel the burning on my ears! But I’m with you, if this is the worst thing I have to worry about with this DMD, I’ll gladly take it!

  • Pvilla
    5 years ago

    I’ve been on Tecfidera since October. I was just diagnosed with MS after a 2 week bout of Optic Nueritis in June 2012. Tecfidera is the first MS med I’ve been on. I too had a flushing episode when I first started but not since. I have no symptoms of MS (the Optic Nueritis is gone) so I take these 2 little blue pills daily. I hope that I will continue down this path of excellent health and 0 symptoms. 🙂

  • Pvilla
    5 years ago

    I meant June 2013…wow, it feels like way longer! 😉

  • SnowCat
    5 years ago

    Taking a low-dose aspirin prevents flushing from Tecfidera.

    I have been taking Tecfidera since May of 2012, and I have only had the “flushing” twice, and that was when I forgot to take the low-dose aspirin before taking the medicine, as my neurologist’s assistant recommended I do.

    I just passed the 10 yr anniv. of being dx’d with MS.
    In 2012 I had my worst exacerbation ever. It lasted 6+ months, all summer.
    The summers are horrible for me. In winter I look like I’m not even sick most of the time, but in summer, I need a cane and if I try to do anything outside, I use a cool vest with ice packs and a lot of other cooling items. I don’t go outside in the summer often.
    But in winter, I can go for short walks, and my husband and I go watch hockey games, and do pretty much whatever we want, we have more fun in winter.

    I couldn’t wait to get off Tysabri. Knowing the side-effect was just too much for me! Then my neuro had me tested for the JC virus and I tested positive, so she said definitely no more Tysabri.
    I was on a low-dose chemo drug, Mytoxantrone for a short time, while waiting for Tecfidera to be approved and released.
    I love the ease of the oral treatment. The efficacy is something to be seen once I get my MRI next month, but as for my symptoms, I feel pretty good. I attribute most of that to the cool weather, though.

    I still have the spasticity in my left leg, but I am taking Neurontin for that. The zombie-like fatigue was been helped immensely when I was prescribed Concerta.

    I wish you all the best, and good luck.

  • Terri Lira
    5 years ago

    Hi I am on Tecfidera now for about three months and I haven’t had one side effect, I take 240 mg so I don’t know if that has something to do with it. I had just come off a major flare up that lasted three months. After a ten yr diag. never having any flare ups then boom. I was having alot of surgeries at the time, I had just survived breast cancer, and was going through the reconstruction process, and I also had foot surgery so maybe my body just freaked out. But the Tecfidera has done well I guess i haven’t had any symptoms except fatigue, leg weakness so I consider myself lucky. Good luck and take care.

  • Bruce Kujawa
    5 years ago

    I’m starting Tecfidera in two weeks. I have been on Tysabri for 7 1/2 years but with the new blood tests for PLC we found out my number to contract it is higher then we thought. At first I was just positive then they can out with the scale and I’m 1.7. My doctor suggested I try one of the new oral drugs and I chose Tecfidera after reading up on all of them. I already told my family members to be ready for a new Hot looking me. I really hate to stop Tysabri but you have to do whats good for you. I hope this works as good as my Tysabri treatments

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