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?

[jen673]

Going on 3 weeks with Tecfidera and still good. I've had a little nausea one day.  Right now some of my  MSsymptoms are acting up but minor. You are on to something about the caffeine and coffee.  After having my AM cup I feel a little burning/flushing but mild.  I'm pleased so far :)

Jeny

[SarahL2491]

neuro says BABY aspirin, twice a day, enteric, not the reular kind, which will result in it disolving in intestine not stomach.......also hearing yogurt and oatmeal alone with pill in morning helps............

[twopack]

Had an appointment today with my MS neuro.  He mentioned they have had patients calling in left and right because Tecfidera is eating up their stomachs.  Glad to see it hasn't been a problem for those who have started it here.

Hmurra, headache wouldn't be a big surprise if flushing is a common side effect because blood vessel dilation in the brain causes headaches.  Nitro glycerine tabs will do the same thing when they're given to relieve heart pain.  It might be good to note that caffeine may cause vessels to dilate out in the body but it causes the heart to work harder and constricts blood vessels in the brain (thus, it's a common migraine remedy).

Donner, people are relieving nausea with aspirin?  Maybe THAT'S what's tearing up their stomachs!!

[donner13]

Well its my fourth week of meds and I am having low stomach cramping and nausea..not every time. Definitely eating with the meds helps. It seems to go away after less than a hour. Hit me for the first time last sat. I was shopping and actually came home!  I talked to my nueuro and he said to eat and that people were having good results with the nausea by taking an aspirin an hour prior to taking meds. He said it shuts down the response to nausea, not the ecotro aspirin, but the real deal. Will see how it goes, he said it usually lessons and to hang in there, I'm not going to change or anything..I must admit I feel a bit like a  guinea pig..love to hear from others?

[hmurra1]

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. My Neuro was very excited about this new drug and so was I !  I was sold when she told me that Tecfidera was shown to prevent "back holes" in the brain--spots where the brain tissue dies, which can cause dementia-like symptoms in progressive MS.

I am currently finishing week 1 on Tecfidera. Tomorrow morning is my first full dose (I am so excited to get on that full dose). The first evening I took the pill, I was paranoid about "missing" my shot. But, I am one week without the Copaxone now, 1 week with the Tecfidera.

I had only one bout of flushing after the first dose--I was an interesting shade of tomato red on my face for about 6 hours. Remember, Tecfidera acts like Niacin does in your system. Once the body adjusts to the levels, the flushing stops. Since that one time, no more flushing--not even with the second dose. Best advice i can give you about the flushing--don't take your morning pill with coffee or any drink that has caffeine, which can open up your capillaries causing you to flush more. I also avoid taking my b complex vitamin (b3=niacin) at the same time. I take it a few hours later.

I HAVE HAD NO GI PROBLEMS!!!!

The only side-effect I am currently having is headache. Not migraine level by any means, but a stubborn headache nonetheless. No pill seems to help it go away. But, it is honestly a small problem to have. I was actually relieved to see that headache was a common side effect so I won't stress that it is something bigger.

Hoping that this RX will work wonders for us all! Best of luck!  

[SarahL2491]

Oh golly, I'm still chicken...........waiting on insurance information but...........next Tysabri infusion is Thursday............