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Tecfidera and Re-Activation of Epstein Barr Virus

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    Tecfidera and Re-Activation of Epstein Barr Virus

    If you read an earlier post of mine you will see back in Jan-March I was trying to figure out why I was so tired...by tired I mean exhausted and bed ridden. After 2 MRIs and multiple blood draws and 4 dr visits I finally had a diagnosis in March. I had a re-activation of Epstein Barr virus (I had a bad case of mono at 17). I asked my neurologist if Tecfidera could have caused it and if I should go off it. The response was "we cannot rule it out so I should go off it for a month". Well I went off it for 2 months because I didn't want to re-start until I was no longer feeling fatigued. Now it's 4 weeks after my re-start and I feel the fatigue symptoms back again. I wonder if my crappy immuno-modulated immune system can't seem to keep the Virus at bay. After reading the recent publication of Tecfidera causing a re-activation of the virus that causes shingles I am further convinced that Tecfidera has caused my Epstein Barr Virus re-activation.

    For that reason I am seriously considering quitting Tecfidera after being on it for over 3 years. I plan to discuss it with my doctor next week. Before that I thought I would reach out to see if anyone else on Tecfidera has had a re-activation of Epstein Barr Virus.
    Carrie

    #2
    Tecfidera was a great medication for me until it wasn't. I have no known history of Epstein Barr, but I had 3 bouts of shingles while on Tecfidera. I wish I was still on Tecfidera, but the best choice for me was to go off of it.

    I hope you get more definitive answers, but decide what you want and explain to the neuro what you want to happen. I wish you well ...

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      #3
      now I'm concerned

      Carrie,

      I know you posted this 2 years ago but I was browsing the forum because I was going to be restarting Tec in a couple of days. I was on Tec from Dec 2013 - Nov 2015 and went off because of fatigue. I thought it was the Tec but not positive being I have other things going on right now that can cause fatigue (perimenopause) but reading your post makes me wonder about EBV. I guess I'll find out after I restart. I didn't get the fatigue until about a year and 1/2 into it. Hope all goes well. We'll see. I've never been tested for EBV but pretty sure I had mono when I was 19.

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