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Tecfidera

Any news on how people are faring on this new drug?  I've joined a Tecfidera chat on FB but its starting to scare me as they are describing horrible problems with stomach issues and flushing and headaches and such.  They are still processing my paperwork so not sure whether to proceed or stay on my Tysabri...

haven't heard anyone chime in lately on how it is treating them and certainly trust this site!  You guys are family

off to play in the raindrops on errand day
Best Answer
5112396 tn?1378017983
I think this is the community's current repository for what you're looking for. http://www.medhelp.org/posts/Multiple-Sclerosis/Tecfidera-BG-12-Users-Past-and-Present/show/1941451

I wouldn't get *too* concerned with the Facebook information. Obviously we all look into drugs we might be taking so I get the reason going there, but people tend to be more motivated to mention concerns and complaints and commiseration and let positive experiences ride without mention. For example, I use an IUCD for birth control. Could easily google 100 outlier horror stories, but that doesn't reflect my over ten years of blissful usage, because I've never been bothered to mention it!

It's just a little quirk of human nature. Look at the letters to the editor section in any paper! I'm not saying none of the experiences you've read have merit, but it's hard to get the real context. If you start a new medication and anything at all happens, it's very easy to assume the events were related when they may in fact not be.

Have an honest discussion with your doctors about the potential downsides. No drug is approved without years of people having been on it already and the data form their experiences are out there in some form.
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Avatar universal
The "best RX is a term we can't really use.  What you use depends on how your neuro wants to treat your particular MS.  My Tysabri, despite the JC+ from the start, had been my neuro's choice for my particular problems and speed of lesion formations.  I have friends, who's neuro's feel very comfortable leaving them on Rebif, baed on their MRI and lesion progression.

I was only concerned with the side effects as my particular MS attacks with a "vengence" with nausea/vomiting when its triggered.  My last 3 flares since mid-April have kept me down for a total of 10 days and I am not looking forward to dealing with this for several months if this is what this particular pill does.

I entertained the idea,( and have gotten the "cute" (if you call it that) little green bag and literature from Tecfidera, although still waiting for insurance verification and then the wait with Biogen for financial assistance,) because I do travel and setting up Tysabri infusion sites has been a constant problem, and this seemed like a good idea.  My neuro sanctioned it and yes, have been reading everything I see on it.

I am glad you only had flushing!  Sounds like it is working for you.  

Helpful - 0
Avatar universal
I was on Copaxone with success, but I want to be on the best RX out there to "stop" this disease's progression as best as I can. I am finishing week 1 on Tecfidera. Tomorrow morning is my first full dose. I had only one bout of flushing--I was an interesting shade of tomato red on my face for a few hours. Remember, Tecfidera acts like Niacin does in your system. Once the body adjusts to the levels, the flushing stops. I have had NO GI problems. The only side-effect I am currently having is headache. Not migraine level, but a stubborn headache nonetheless. Hoping that this RX will work wonders for us all! Best of luck!
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