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I was put on Tecfidera (just recently diagnosed with MS in September) and I am wondering what side effects anyone taking it has had? Also how long before your side effects subsided? I'm beginning my 4th week and last Tuesday I started with daily headaches, nausea, vomiting, and now extreme abdominal pain, and each dose I take, the worse it gets!

November 22, 2015 (edited)
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A MyMSTeam Member

@A MyMSTeam Member I am on Tecfidera been on it I THINK a little over a year. Occasions I still get the flushing and itching. Even at the worst of it is nothing (for me) compared to Rebif. for 2 1/2 years every shot night I would cry (basically) 1. it hurt 2. flu like symptoms and fever of 102 3. next day felt like road kill with a Mac-Truck sitting on me...Rebif made my depression worse I just didn't know how bad it was till I got off of it. EVERY shot night when I'd see an 18 wheeler I would think just crash into the back of truck that way only one person would get hurt/killed - would be me...Sorry about that back to Tecfidera ...I normally would get a table/tea spoon peanut butter or whatever is classified as protein before I take that oral medication. As far as the stomach issues (I've heard some people has major issue with this) mine was already messed up so I couldn't tell if it was Tecfidera or normal issues so I just chunk it up to normal issues and got a bit better at preparing for those issues.

November 24, 2015
A MyMSTeam Member

I was diagnosed in December last year and started Tecfidera in February. My neuro has changed how quickly her patients get onto the full dose... I started 1 pill for 2 weeks, 2 pills for 2 weeks, 3 for two weeks and then full dose. Some people found that helped with the side effects, but I'm not sure it did for me.
I always take my medication with a full meal. I eat a little bit, take the pill and then finish the meal. That is supposed to help with the stomach issues. I haven't had any stomach issues so far.
I experience flushing regularly. It was daily for several hours when I first started the medication but it has since tapered off. Now it would be once or twice a week for a half hour or so. It supposed to be just upper body, but I have had full-body flushes as well. I will get a dry mouth and then an hour or so later I start to salivate, my nose runs, my eyes water.... the salivating/nose running/watery eyes isn't actually a documented side effect of Tecfidera (according to Biogen) but it started when I started the full dose so I think it is related. I also experienced dysesthia, which only happens to about 2% of people. My entire right arm became so sensitive to touch that when my hair brushed my arm it felt like a knife slicing me and my nerves would send wrong signals all the time (i.e. I would feel itchy so then I would scratch and then seeing/feeling the pressure at the same time would sort things out and then the itch would move.) That was the worst one but it only lasted about a month and I haven't had anything like it since.

November 22, 2015
A MyMSTeam Member

My neurologist ran a large portion of the clinical trial and currently has between 200 and 300 patients on Tecfidera. I followed his instructions and have never had a single side effect. Here are the instructions: for breakfast, eat Greek yogurt with fruit and nuts, wheat toast with natural peanut butter and a banana, or oatmeal with fruit and nuts. Eat evening pill with dinner. If you are not eating with the pill, take it with a protein shake or bar. Side effects are minimized with protein intake

For flushing: take two adult aspirin and treat like a fever.
For itching: take a Claritin in the am and a Benadryl at bedtime.
For reflux: Zantac 150 mg twice per day.

I also took the lower 120 mg dose for the first four weeks instead of the jest week. They told me on week five if I had any issues to call and they would titrate up slower.

My neurologist really likes texfidera and says that it is well tolerated. It seems that not all neurologists have this information. It's unfortunate. Let me know how you make out.

November 23, 2015
A MyMSTeam Member

Yeah rebif was the worst sometimes I wouldn't even take it cause it hurt smh I then we nt to gilyena to Aubagio

November 26, 2015
A MyMSTeam Member

If you eat something that is high in fat before taking the pill, it may help. I was on it for 2 years and found when I ate healthy food (fruit/veggie), I experienced more flushing and itching. I only had diarrhea for like the first week and then it tapered off. No nausea. I do know that my doc said it is a very harsh medication and very rough on a person. He said I did the best of any of his patients, but I, too, had to stop it last month as it began literally robbing me of any and all appetite. Waiting insurance approval to start Copaxone

November 23, 2015

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