Hi everyone I have recently started taking Tecfidera for my RRMS which I was diagnosed with over 11 years ago.
I absolutely hate this treatment at the moment the side effects are horrendous for me. I was ok on the initial lower dose but since going onto the higher dose it’s been unmanageable I have been given permission to work from home as my commute to London isn’t possible. Has anyone else gone through this with this treatment & come out the other side? Before I was on Rebif briefly then copaxon but had an allergic reaction to that. Then I was off treatment for 6 years & perfectly healthy. The way I feel right now I may just come off this treatment.
Char x
Hi Char, sorry to hear this. I’ve been on Tecfidera for over 4.5 years and have to say, in my experience, its been a first class DMT. I had some flushing when i just started but it disappeared after a few weeks and has never been back. Best of all I’ve been relapse free and MRI clear since i started it.
I assume you are taking it with food, as there are a variety of foods that other users swear by to make consumption and lessen side effects. I’m sure some suggestions will follow from other readers.
Perhaps your local Pharmacy or GP can give you something to help. Good luck.
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That’s good to hear that the treatment actually works. I have had pretty much all the common side effects & they have been quite severe as well. Yes I am being really careful how & what/when I eat with it had to incorporate a lot of full fat foods & have been prescribed other medications so that I can take this one I feel like I am rattling. I will preserve with it now I have heard how successful it’s been for you so thank you for your response Char x
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The stomach protector omeprazole helped me initially but I got progressively sicker, perhaps a coincidence, (chronic sore throat, acid reflux, extreme fatigue) so I switched to a similar drug called Vumerity, which supposedly is easier on the stomach. However, once I increased the dose, I got a bad, hot, itchy rash around my torso.
I read about users taking aspirin 30 minutes before the pills and so far, that has stopped all side effects for me, so will try to reduce the aspirin in time then see if I’m OK without the omeprazole.
Aspirin so far has been a game changer for me but it’s very early days on this drug. I’m taking 250 mg twice a day, but plan to reduce.
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I suffered with Gastro for a good 3 months before it just became a mild discomfort. However the hot flushes never stopped and sometimes came with thumping headaches… I stuck with it for 18 months, but guess it just isnt going to jive with me, so transitioning to Vumerity next week. Hopefully that behaves a bit better with me.
Hi CharW,
Hummmm I had a love/hate relationship with Tec for about 6 years. “Love” in that it seriously put the kibosh on my MS. Like it literally shut it down. No activity, hardly any symptoms, no new lesions. Nothing.
However, “Hate” due to the side effects which never really went away and for some reason ramped up about two years ago. My main grip was the flushing. It would start with a pounding in my ears so loud I couldn’t hear the telly, then I’d get the hot itchy rash all over my face and torso. Sometimes if I was lucky, drinking a pint of cold water would cut down the reaction time and it would fade away in 10 mins or so, but other times I could be an hour. No fun.
However, I stuck with it as it was clearly working to keep MS asleep. Then I started to get the stomach pains, and omg the …well…you know. Let’s just say staying close to home was my only option at times…
About a year ago My MS Nurse and Nuero suggested I go down to half dose which helped enormously. I stuck with that while we waited for an MRI. Unfortunately, I had a massive relapse in March and scans have shown MS is back but as also decided to try messing with my spine this time. So 1/2 dose tech was quite probably not working for me, but full dose was just not sustainable either.
Do try the suggestions listed in previous posts - they have all worked for other folks so may work for you. I found taking a tablespoon of Peanut Butter worked for me for a while but even that lost it’s power in the end.
I suggest reverting back to your Nurse/MS Team if the side effects keep going and are a real impediment to your daily life. There are so many great DMTs out there now that there really isn’t any reason to stick to one that’s not agreeing with you. 
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Thank you everyone for your kind response to my post. I have since decided that this treatment isn’t for me & have stopped taking it. The side effects were so horrendous that it was affecting my day to day living.
I am lucky in that so far I have managed to live quite well with my MS but I also know this can quickly change so I will continue to look at alternative treatments with my nurse & consultant