Multiple Sclerosis (MS) Support Group
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cloudsintheysky
Hi all,
I wondered if you had any thoughts or experiences to share about using Tecfidera.
I started in January and was on 1 pill for 5 weeks after I tried 2 pills briefly and my leg seemed to bother me. I think 5 weeks on 1 pill was helpful because it gave my body more time to acclimatize. For the past 2 weeks I have been on 2 pills. My leg is starting to bother me again. I seem to be ultra sensitive.
Overall, I have high hopes for Tecfidera and I really appreciate that it is an oral medication. Some days, I even thought I was feeling better. The last few days with my leg bothering me has been a bit worrisome, but I am still trying to be positive.
Side effects.
Generally pretty good. Some gasiness and nausea, but ok. Flushing twice. I take an extra stomach acid reducing pill and sometimes an antinauseant. I have been sleeping better since I started, which I like! Though sometimes I sleep a long time.
What have your experiences been like?
Best wishes and healing to all.
I wondered if you had any thoughts or experiences to share about using Tecfidera.
I started in January and was on 1 pill for 5 weeks after I tried 2 pills briefly and my leg seemed to bother me. I think 5 weeks on 1 pill was helpful because it gave my body more time to acclimatize. For the past 2 weeks I have been on 2 pills. My leg is starting to bother me again. I seem to be ultra sensitive.
Overall, I have high hopes for Tecfidera and I really appreciate that it is an oral medication. Some days, I even thought I was feeling better. The last few days with my leg bothering me has been a bit worrisome, but I am still trying to be positive.
Side effects.
Generally pretty good. Some gasiness and nausea, but ok. Flushing twice. I take an extra stomach acid reducing pill and sometimes an antinauseant. I have been sleeping better since I started, which I like! Though sometimes I sleep a long time.
What have your experiences been like?
Best wishes and healing to all.
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These are my problems I get with Tecfedera:
1. Constipation and gas. I get constipation that I swear i get from Tecfedera although my neuro doesn't and the fact sheets don't say that it is a cause. But my problem with constipation is worse now on Tec and when I skip a dose, it gets better. Definitely, think that it can add to my problem. PLUS, I get gas that is a problem in crowds! I have never had problems with diarrhea at all with Tec or stomach cramps.
2. I have problems with my feet getting tingling feelings that I never got before until I got on Tec. Also, my walking is slower and worse. I haven't fallen lately but my walking is worse. I feel my MS is growing in my legs. I get weird feelings in my legs that I got before when I first got MS and it meant my MS was moving around in my body. My MS is progressing with Tecfedera. My disability is more noticeable by other people and they are treating me like I can't open a door, etc., which is far from true. But other people are noticing my progression. Ugh.
3. I don't get the worse days that I had on Rebif and all the problems from the scar tissue from the shots but Rebif seemed to work better. I see my neuro in April and will ask him to put me back on Rebif.
I made it thru and I am glad I stuck with it.
I have had some random itching of the palms of my hands and bottom of my feet but have not had that in last 3 weeks or so. When I do it goes away so quickly I forgot all about until someone ask about side effects.
I have had about 3 or 4 episodes of flushing since week 3 but each have been extremely mild and last about 10 mins.
Some times I have insomnia but I don't know if it is related because I randomly had bouts with it before Tecfidera.
I also have high hopes for the drug. For me I think I was getting needle fatigue and having this oral option is better not taking a DMD at all.
I have my 3 month check up in a few weeks and right now I would say we will continue with Tecfidera.
Please tell your pharmacist that supplies your Tec about what you are experiencing with your legs or any other issue. It might help all of us on Tec in the long run.
Sending everyone good wishes.