broudie

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  • broudie
    July 27, 2019 at 4:02 pm

    Everyone, it’s great to have even a small community to discuss this as there are so few of us.

    I saw my neuro a month early and confirmed that I am getting weaker. Numbness reaching my ankles now. We’re going back to ivig while retaing 40mg of Prednisone. If I continue to get worse we will try Rituximab in October.

    Regarding steroid side effects, I take my BP meds at night, plus melatonin 10mg plus cbd drops and I sleep like a baby. Recent blood test say I’m close to diabetic but dropped 15lbs to compensate. Nothing to do with the moon face and swelling feet though. And eyes always teary.

    broudie
    July 10, 2019 at 1:08 am

    I should have typed a bit more, but the hand numbness is slowing me down big time. I started out with IVIG, no response. Then moved to oral prednisone 60mg. Then supplemented that with infused prednisone to get me “over the hump”. Tapered to 40mg of steriods, but it looks like I tapered too soon. The doctor wants to see me in 3 months (well 1.5 months at this point).

    I’m gaining some strength back by spending time at the gym, but numbness in my feet is starting to crawl up. Chicago, any side effects with that immunosuppresant yet?