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Has anybody here taken Tecfidera aka BG-12? Here's a blog post about it and here's the MS Trust's factsheet about it.

As always, I'm a bit put off by cries of 'wonderful' about the latest MS treatment. How well does it work? How nasty are the side effects, for real people under real conditions? Taking a tablet instead of an injection seems trivial to me, after the years I've been almost trouble-free on Copaxone. But I'm open to persuasion.

If and when Tecfidera gains approval for use in Britain, I'll ask my excellent neurologist what she thinks. She didn't give me Gilenya because, she says, people died during the clinical trial. I haven't seen the original science about that.

To this comm's Mod: please can we have a Tecfidera tag?



( 5 comments — Leave a comment )
Mar. 31st, 2013 06:01 pm (UTC)
Clinical trial participant here. I was in both the double-blind study, as well as the open-label, and remained in remission for the duration of both. The first few weeks I had some nausea and flushing but otherwise I didn't have any side effects. I'm happy to answer any questions.
Apr. 1st, 2013 05:29 am (UTC)
That does sound promising. Of course, there needs to be data from many people before a new treatment gets licensed. But I suppose that will have been done.

The part I find a bit scary is the nausea. How bad was it, how long did it last, did you actually throw up, etc.
Apr. 1st, 2013 03:49 pm (UTC)
It lasted for about two weeks, but it wasn't really that bad. I never actually threw up, and only once felt like I actually would. It was mostly just a little bit of an upset stomach a little while after taking my dose. From what my neurologist has told me (he was also the study doctor)- that seems to be the norm.
Apr. 1st, 2013 08:56 pm (UTC)
Thank you. I wonder what NICE will decide and what my neuro will say.
Apr. 2nd, 2013 12:49 am (UTC)
No problem. Best of luck either way, I hope other people have as much luck with it as I did (I quit the study when we decided to start a family). I had the worst luck with injections and the study was my saving grace.
( 5 comments — Leave a comment )


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