I have been diagnosed with radiologically isolated syndrome (tons of lesions on MRIs and positive lumbar puncture, but no obvious symptoms or anything that my neurologist would consider an MS attack).He wants to get me started on Tecfidera in sept and i’m really anxious about it, i saw on reddit that some people had terrible side effects. Anyone here on it who could share their experience/give me some advice?
I am sorry that you are having a worrying time. A dx is hard enough to get one’s head around when assailed by crippling symptoms: facing the prospect of heavy duty meds to deal with a condition that must feel wholly abstract must be really tough.
Perhaps the way to think of it is to tell yourself that you have been very lucky: the areas of brain damage have so far been in places they have not trashed your mobility or your vision or your bladder control, so getting on a decent DMD now gives you the best possible chance of keeping it that way. That’s how the situation you have described reads to me, and I am glad to hear you have a pro-active neurologist who wants to stay one step ahead and protect you from harm. The thing about MS is that staying ahead of the game is the only show in town: preventing future damage is key because once damage is done, it’s done and there no use trying to play catch-up. I do speak from sad experience here.
Good luck with your treatment, and I hope it allows you to get on with your life and stay well and strong.
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Hi, I took Tecfidera for 18 months and other than some hot flushes during the first few weeks I had no issues with it at all. The flushes were at the same time every time, I felt them coming and they only lasted a couple of minutes so if I was in company and wanted to hide them I’d just nip to the loo. I’ve had a couple of injectable ones, avonex and plegridy but out of the 3 Tecfidera was the best by far.
Down side was it reduced my lymphocyte count that far that I had to stop it and my count hasn’t came back up yet (14 months) so I’m still waiting to start something else.
Hope you continue to be lucky and stay as symptom free as you are. Good luck with it all and welcome to the club none of us wanted to be in.
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HI, I’ve been on Tecfidera around 4.5 years. Aside from some hot flushes when i just started its been a great DMT for me. I take one tablet twice a day with food (breakfast & dinner), bloods every 12 weeks or so to measure Lympho count. A very stress free medication to take in my experience. Best of all ive been relapse free and all clear on annual MRI’s since starting it. I’d absolutely recommend it.
Some folks report an upset stomach when taking it, so Omeprazole on standby might be useful if that’s you. Good luck. Retro.
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Hi. I’ve been using Tecfidera for over three years with no side effects at all. I’d been on an injectable DMD for years before so this is much easier.
I take it after breakfast and dinner so it’s on top of a meal each time so no stomach problems. They do blood tests every three months and the Tecfidera is delivered to my home. Couldn’t be easier! Oh, and no sign of a relapse either.
Good luck with it and I hope it works for you.
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Thank you so much everyone! your replies are giving me lots of hope. I know everyone has a different reaction to DMTs so i won’t know till i try but it’s good to hear of some positive experiences with Tecfidera rather than all the horror stories i read about on reddit! I met someone at an MS Society event the other day who was diagnosed at the same time as me and in a similar situation but he was doing Ocrevus infusions instead and made it sound so good, i started to have all sorts of doubts. Really grateful for this forum and to you all taking the time to reply 
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You don’t get many people spontaneously posting on Reddit (or elsewhere) to announce that such and such a drug has given them no side-effects and they just wanted to share the news with the world. So There is a certain amount of built-in bad-news bias there!
Good luck with your treatment
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I’ve been on it about 3 years now. Still get the flushing some days but it’s nothing I can’t handle. Lasts 30 minutes tops and is usually mild. My hair definitely breaks more than it used to, which makes me sad but my friends and family assure me it’s hardly noticeable (hopefully they’re being honest!) 
No detectable disease activity since starting it which is obviously the name of the game. So overall I’ve been very pleased. I think a few side effects are to be expected with any drug at this level really but can honestly say it’s only the above I have and I think that’s a pretty good trade off!
Also worth remembering if you don’t get on with it you can just stop. It doesn’t have a rebound risk like some of the stronger drugs, so there’s really nothing to lose by giving it a try.
Good luck 
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Started on Techfidera in August 2020 had severe blushing and itching side effects that were mentoned by MS nurse and biogen drug manufacturer . This has never stopped not as frquent as use to be daily but now can go 2 or 3 days with no itching and blushing . Still there though and is now thought to be an effect of the MS. The itching and blushing can last for a couple of hours Ivejust learnt to live with it.