Search Discussions

Main Content

  • MellyK
    Just wondering as I can't see new posts regarding this but I would love to hear how you are doing on Tecfidera
    all of the old posts all seem negative

    Thanks
    Mel
  • schuman319
    I was just prescribed the meds I have not received them yet. I am worried about taking it cause of the risk of getting the pml. I am just wondering if you felt the same way and how is it going for you. I 2as diagnosis 1/2/20 I am still new to understanding the disease and what medication is out there.
     
  • klg-123
    The book "MS for Dummies" was a HUGE help for me in understanding MS. I highly recommend it!
  • klg-123
    I have been on Tecfidera since my diagnosis in 2015 - it was the first and only medicine I have tried. I won't lie, the beginning was a little rough. I had all the side effects in week 3- stomach pain, cramping, nausea, flushing. I called my doctor and he had me stop and re-start and he adjusted the titration up to the full dose to 4 weeks to give me more time to acclimate and it made all the difference. I have not had any side effects after month 2 except the occasional flushing when I don't eat with it - but even that is super infrequent. The best part is that I have not had any new or active lesions since being on it and my bloodwork has remained normal. I get MRIs and bloodwork done every 6 months.
    As for the PML concern, I was assured by my neurologist and my MS specialist that it is only a risk if a person is JCV positive (which I am) AND the lymphocyte count drops to a very low level and it is a very small risk. I am not concerned at all anymore about this since my bloodwork has remained normal.  My doctors also check my liver function and all is well there too.
    Almost 5 years with no progression, no symptoms and no hassle - it has been worth it for me. Feel free to ask any questions. Best of luck to you!