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My experience off and on Tecfidera

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    My experience off and on Tecfidera

    I started Tecfidera right after it was approved by the FDA. I had major flushing and burning and itching the first day for about an hour. That was before Dr's realized taking low dose asprin helped eliminate that. I didn't really have GI (gastro intestinal) issues. No GI pain. (I actually also have Crohn's disease.) I always get a dry cough 3-4 hours after taking my dose. I also get a drippy nose most days for about an hour around the same time. I take my morning pill right after breakfast. I don't eat anything special. I take my evening pill right before going to bed (with my sleeping pill). I don't eat anything with my evening pill (thus sleeping pill won't work).

    The lowest Lymphocyte count I've had to date was 0.7. Highest I can remember was 1.5

    I went off Tecfidera prior to having a scheduled surgery for about 2 months (per Dr's request). Upon restarting I took low dose aspirin with each dose. No flushing issues, no GI issues.

    Also worth noting I was on Tecfidera when I had an emergency surgery and did not stop taking it and had no issues with infection or lymphocyte counts.

    I went off Tecfidera June 2016 because I felt it caused/contributed to a reactivation of epstein barr virus. I had extreme unexplained fatigue for months before a Doctor discovered the high reactivation. To date I have not found evidence it caused it, but since it is known to cause reactivation of shingles and the JC virus I deduced it caused my epstein barr reactivation.

    I recently re-started Tecfidera after switching to Copaxone quickly lead to a relapse after being relapse free for years and I realized being on Tecfidera actually seemed to help my Crohn's symptoms. This time my side effects were MUCH different. Again I took a low dose aspirin so I didn't get flushing or burning but the GI pain was awful at times. I did my usual pill at breakfast and pill at night. No meal changes. I can say now 1 month after the re-start my GI pain is little to none. I stuck it out knowing it would go away with time.

    I am still worried it may cause a reactivation of epstein barr but at least this time I know what that feels like and won't go through months of testing and dr appointments without an answer. On the bright side I have confirmed it does seems to help my Chron's disease symptoms. I also learned the shot is so much of a mental disturbance vs just popping a pill. I forgot how mentally challenging taking a shot is vs just a pill. So I am once again satisfied with Tecfidera and think it's the best option for me right now.
    Carrie

    #2
    Thanks for sharing your experience. Sounds like you have really been through a lot. I too am committed to hang in there and get past the side effects because the thought of going back to needles send me into a panic. There's so much to think about with Tech though - my husband is constantly worrying about damage to liver or kidneys.

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