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Tecfidera

Hi first post here, long time lurking. I started taking tecfidera at the begining of Dec 2018, It was ok just a bit of itching and burning. I had a blood test at the end of December and i’m having another end of march. I’ve been fine on tecfidera until this week then last night, I started having halucinations and having spasms so bad my husband thought i was having a fit. So today It being friday I can,t get hold of any MS nurses or my GP, I want to stop taking these tablets and wonder if anyone else has had this problem?

Hello (welcome to the forum)

You could a) phone your neurologists secretary and see if an urgent message could be sent to him/her (unlikely I know), b) phone your local chemist and ask for the pharmacists advice, c) phone 111 and ask them (they’ll probably be useless, but may be worth trying), d) go to A&E - that way at least you’d get a neurologist to take a view.

Or just stop taking them? I don’t think Tecfidera is a drug you have to taper off. (I had reduced lymphocytes and when the decision was made that I should stop, I just didn’t take another pill.) Or maybe just don’t take any for the weekend, just in case.

Are you still having the symptoms you had last night? If so, maybe go straight to the hospital.

And did you take your dose this morning? Did it have any untoward effects if so? If so, I’d definitely stop taking anymore, and get some advice ASAP.

Take it seriously. Whether it’s a side effect from the Tecfidera or not, it sounds frightening.

Sue

Thanks for the reply, I’ve rung the Neurology secretary and awaiting their reply, their phone is on answerphone as is my doctors and MS nurse, as it’s friday it will probaly be Monday. I’m fine today but will definaly go to A&E if it happens again.

Penny

Hi Penny

That doesn’t sound fun at all! Another person you could call is the on-call pharmacist at your local hospital or the neurological inpatient ward. A few months ago I accidentally took a double dose in the evening. I was concerned about how big a deal it was. So as it was out of hours, I called my hospital and got put through to the neurological ward and spoke to a nurse. She in turn spoke to the on-call pharmacist to get advice for what to do, as they’ll know more about it than a normal pharmacist.

So if you didn’t want to wait till Monday, you could try that route for some expert advice.

Dan