After a horrendous two weeks on Tecfidera, stopped taking the tabs Monday and only today have I been able to get out of bed.
Reflux and nausea even with big guns prescription medication relentless, Pain so terrible, no sleep and to cap it all Fatigue never had it so bad, couldn’t even stand up to brush my teeth.
Also blister like spots on my body and teeth very sensitive to hot and cold.
How disappointing I was really hopeful to get of the injection regime but compared to this experience will be thankfully to get back to the Rebif just need to see if blood is ok before I can resume.
I am still glad I gave it a go and know it has worked out ok for lots of people I am just not one of them.
All the best to anyone starting new meds whatever they are.
you are no doubt unlikely to try Tecfidera again, but i fear you might have been recommended a course that was essentially ‘too much too soon’.
if you were allowed to ease yourself into the new regime, with just one 120mg pill daily for at least the first week, your adverse reactions might have been less significant and thus you would’ve been able to build a tolerance like most people.
Annabell are you going to be taking any other DMD’s ? I shall be giving myself chance to recover and will do the titration route with Rebif again
Paolo, 120mg x 2 week one then up to 240mg x 2 week two. I asked to start slowly because I know my own body and how sensitive I am to meds but clearly my opinion counts for nothing. Even when the effects kicked in early on on the low dose, it was not an option to stay on that, so as soon as the dose was upped the side effects became steadily wose until I could stand no more. I do not understand the notion of ‘its not a therapeutic dose’ because now I am not taking anything and how therapeutic is that. Grrr
I’m sorry you haven’t been able to get on with Tec.
The dosing you were advised was the same as me, but I am gastrically always quite strong so thought it would be ok, and it has been…think I am now on week 5 or 6…lost count to be honest!
Hope you get well and back on your feet soon and that your MS nurse and neurologist can find something to suit you soon?
Hi Dee hope this finds u a lot better now this m s is the pits its no way to live is it ,mind u when we read the paper and then look around there does always seem to be someone worse off than yourself . In fact I ended up in tears today cause in the local paper there was a picture true of a wee boy(age3)who had been run over by his father at their farm.it was heartbreaker take care and good luck with the trial and error of d m d.
This was my second attempt with tecfidera. I tried it about 14 months ago and came off it because I felt really weird and unwell, unfortunately my husband had an emergency operation at the same time and because I was caring for him I stopped taking it.
As this was my second attempt there is no way I will risk taking it again.
I saw my neurologist this week and have decided not to take anything else, she was in agreement.
I am following "the Overcoming Multiple Sclerosis " programme, details of which can be found online.
Its worth looking at, it is very positive and inspirational written by a medical professor who has ms.