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A MyMSTeam Member asked a question 💭
Surrey, BC

Has anyone been on Tecfidera long term? If so how is it working for you and any management of side effects that you could give tips on?

October 26, 2015 (edited)
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A MyMSTeam Member

My neurologist's instructions are as follows: side effects are very much tied to your protein intake, eat one of the following for breakfast: Greek yogurt with fruit and nuts, natural peanut butter on whole wheat toast and a banana, or oatmeal with fruit and nuts. Never eat the pill without food. If you are not eating when taking it, you must eat a protein bar or shake with it. Any dinner should be fine. If side effects cannot be managed with protein intake, take two adult aspirin for flushing. For itching, take a Claritin in the morning and a Benadryl at night. For reflux side effects, take 150 mg of Zantac twice a day as needed.

I live by these rules and have not experienced a single side effect in the 8 months I have been on it. It makes me sad that other neurologists do not provide these instructions to patients and they suffer. Good luck. Let me know if you have any questions.

October 28, 2015
A MyMSTeam Member

I take 400mg a.m and 400mg p.m.

December 2, 2015
A MyMSTeam Member

I agree with the fact that flushing can be worse at times, but controllable. I also take 800mg's of Gabapentin (neuron tin) daily which pretty much numbs everything. I have had bowel issues once ore twice, but nothing I can't deal with on a long term.

In the last couple of weeks, I have started noticing the "fog" and have fallen several times at work. I went and visited my neuro today and she has requested more imaging, and then probably more steroids. I guess we'll see. I do trust Tec, just maybe for RRMS, which we are pretty sure that I've passed.

October 28, 2015
A MyMSTeam Member

for glee....its good you investigated...but never make any choices unless they are your own...its great to get feedback and it really is too bad that the spokesperson spoke to you in that manner...remember it is your choice on what to use

October 28, 2015
A MyMSTeam Member

I was on Extavia by needle for 18 months . I am now on Tecfidera and I haven't had the depression. That is a lot for me. I just reached my one year. I still have some flushing, but its not every day. I have lost my balance all together. I use canes now. Try to colour coordinate..haha. I alsleso have a rollator (walker) but only used it once. I almost got creamed at an intersection. I will get back my nerve one day, but until then, it will gather dust. haha. Sorry, I got off track. Tecfidera works as well as it can for me. Pills better than needles.

October 28, 2015

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