Tecfidera (BG-12) Users: Past and Present

[sllowe]

How exciting is this to add a new med to our DMD user threads!. I always post "past and present' on these  so they stand the test of time when referred to for years to come.

Has anyone started? And, since this is so new..... Anyone waiting on arrival?

Like the Gilenya User thread, you all will have a place to share your beginnings w/this treatment, and also be able to help those who come after you seeking experiences and advice :) You can refer this post to new users so they can add their name and date, etc. like this:

-When dx'd?
-Other treatments prior to Tecfidera (BG-12)?
-How long were you on them?
-How long have you been on Tecfidera?

[JaneK1975]

Bump for newbies and I would love to hear updates on the Tecfidera users.

[Milliepede]

Starting Tec on the 28th. Great pharmacist at CVS signed me up for Biogen $10 month program.

This is first DMD but NP thought it the best one for me.

Am nervous as I've had some MS hugs without DMD but I think that's Copaxone side effect...?

Will let you know how it goes.

Blessings to all. Karen

[sllowe]

Bump for new users

-When dx'd?
-Other treatments prior to Tecfidera (BG-12)?
-How long were you on them?
-How long have you been on Tecfidera?

[mikeysmom1995]

After a month on the new titration recommended by the pharmacist, I am finally able to tolerate the tecfidera. YAY! I have minor side affects ie, some flushing, some itching, minor belly upset (not with every dose). I am so happy it worked out as I didn't want to go back to the shots.
Happy days!
Barb

[Kerriberryyork]

I'd been on Copaxone for 13 years (that's a lot of shots!!) and am super excited to be on this pill. Second week, sunburn like flushing, but no nausea or diarrhea. Life is amazing!!

[mikeysmom1995]

After 18  days on the Tecfidara I was experiencing such stomach pain I had to stop taking it. I was fine on the lower dose but about a week into the higher dose the belly pain was unbearable. I called my Neuro this past Monday and she said it is common that it would pass, so I started the high dose again. More stomach pain. I called the pharmacist at the specialty pharmacy and she said that she has had others with the same issues. She recommended 2 weeks on the low dose, then 2 weeks on low dose in the am and high dose in the pm. Then to the high dose 2 times a day. She called my doc and had a new script done, so waiting for that now. I sure hope it works, don't want to go back to avonex.
At least with avonex was only sick for one day after .
Will keep you posted. Kudos to all not having any trouble. It gives me hope.
Barb