Gods, I could walk to my bike after work without dragging my feet. I could get through work without having to force it. Sure my hands still shook and the the muscle weakness was there, but I could do my job!
And now it's going away a little at a time. Again. For someone who has lost so much health, a week and a half of relief has been a GodSend...but I knew it wouldn't last. I miss feeling good already. Dang, I was dreaming of a normal life again. I researched a yoga class, I was imagining dancing again. (yea, that hurts) all the pretty costumes, the sequins, the colorful scarves. I guess it proves that I am really sick and that I'm NOT lazy...when ONE WEEK of feeling good puts my thoughts right on track again with activity and exercise. (Even though I made myself stay within my regular limits knowing that even though I felt good it would easily throw me into a ME/CFS flare if I wasn't careful. Just because symptoms were alleviated, that doesn't mean I can avoid PEM.)
The prednisone dose this time around started at 60 for 4 days, 40 for 4 days, and today was my first day on 20, also for four days, then 10 for four days. Today on 20mg the hives started to come back. Granted they showed up at the end of my work shift at the end of my work week, and they were on my hands...where the most heat and pressure are. We'll see how they appear in the morning.
The hope with the prednisone treatment was to not only alleviate my symptoms after so many months, but to hopefully suppress my immune system enough that it stopped overreacting. This is behaving like an auto-immune disease, and apparently at *least* 40-50% of chronic urticaria (lasting more then 6 weeks each flare-up) are auto-immune in origin with the body reacting to a high affinity IgE receptor (https://en.wikipedia.org/wiki/FcεRI) that modulates allergic responses like histamine. Apparently there are specific auto-antibodies, but they are very difficult to locate and specialized tests are rare. (including one where the serum is separated and injected back into the patient to test for response)
And it does appear already that the the hives are going to flare up again even though I've been diligent about maintaining H1 and H2 treatment during the prednisone course. (antihistamine) which means my immune system hasn't been conquered. Continued treatment TBD. Sigh.
It has been a blessing to feel sort of "normal" again after all this time, even if it was for so short a time. Even though I'm a bit irritable and having a few mild symptoms of tapering the dose I'm grateful for the experience. Thank you.
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