Tecfidera

[Catherine]

Good morning,

 

I hope you are all okay. I saw my neuro yesterday and he has agreed to change my meds from avonex to Tecfidera. I am a little worried about possible side-effects, does anyone here have experience of this drug? I have been on avonex for 10 years, have had MS for 17 years.

 

Many thanks & best wishes,

Catherine

[Nindancer]

Hi there, I have my 12 month review tomorrow! I'll probably get taken off it but they think I'm PPMS, so another story

Anyway, the only main side effect for me was the flushing and that has only been an occasional thing. Worse at the start but quite rare now. Luckily not from the morning one much, so it'd be after dinner so not as obvious as in daylight. My other weird one is that I do get a drippy nose now, very occasional tho so not a biggy, it was only quite recently I realised it was Tec related as I saw someone comment on a facebook group.

Personal tip is to avoid taking it with hot soup or a hot drink Tec are gastro-resistant pills and it even says so on the packaging so I do my damdest to make it doesn't dissolve too quickly. With that in mind I don't take it with a drink in the morning like directed, I take it with my full-lat yoghurt (the good stuff like Onken or Ykos), obviously chewing any fruity bits first. I just try not to have a drink for hal an hour after.

Anyway, that works for me. I've even been trying out this 'mimic fasting' and have only had a couple if minor flushes in the 2-3 months I've done that. And all cam back to soup days !

Good luck though, I'm sure you'll be fine with it

Sonia x

[Nindancer]

Duh, cog fog!

Flush is throat, face, chest, inside of arms for me, they go red. They also go quite itchy but more so on the jawline, throat, inside of elbows and collar bone. It took me until very recently to realise even my legs go red (stayed up late and was shocked when I went for a pee) but nothing below the chest itches fortunately. Oh, and it'll last about an hour for me, if that.

Sonia x

[Catherine]

Hi Sonia,

 

I’m sorry, I have only just seen your reply. Thank you very much for your message although I am sorry to hear that your MS has progressed – how did you 12 month review go? I hope you are not PPMS.

 

I started taking Tecfidera on Saturday and have been lucky enough to only have a slight rash come up on my arms. I didn’t know about the pills being gastro-resistant but so far I don’t seem to have had any problems in the stomach area. I take it with a tablespoon of peanut butter (which I hate but endure!) and also Probio7 – a probiotic tablet. I hope things stay the same for me when I go on to the higher dose at the weekend.

 

Let me know how you are doing, I am sending positive thoughts.

 

Catherine x