Tecfidera side affects

Everyday living
#1

Hi everyone!

I tried tecfidera last year but came off it after 5 weeks. Unfortunately my husband had to have an emergency operation on his back and as I was then his carer could not handle the side effects of the drug as well so I stopped.

Fast forward to this year and as my Husband is now fully recovered I decided to give Tecfidera a second go. All was going relatively well until last night I took the tablet and almost immediately started to feel really strange, my tongue felt burnt and sore and became swollen, my chest felt really tight and I felt like I couldn’t breath. My husband called an ambulance but fortunately when they arrived I was starting to recover. It was quite a frightening experience and I don’t really want to take anymore tablets.

I am only on the third week of taking it and am still on the low dose. I’m waiting to hear from the ms nurse and I haven’t taken today’s dose.

Just wondered if anyone else has experienced this or anything similar?

Annabelle

#2

hi annabelle

i’ve never heard of this before as a side effect of tec.

it sounds like anaphylactic shock.

it will need reporting to the manufacturer and your ms nurse will probably do this.

stay off it until you have heard back.

carole x

#3

It does sound like anaphylactic shock, but is perhaps just a strong attack of what would be categorised as a ‘flushing event’. (Tecfidera usually either sends you into an allergic type tail spin; or will cause havoc on your digestive system; or a bit of both.)

A few tips:

Make sure your stomach is full of food.

Try to take in a bit more food immediately after taking the tecfidera.

Take an aspirin at least 30 minutes before taking tecfidera.

Take an ‘off the shelf’ anti-histamine if the side effects you have described begin to start up and see if this nips them in the bud.

When you say ‘low dose’ do you mean 120mg daily; ie. just one of the white and green capsules?

All the very best.