Went to see my rheumatologist today. Unfortuantley she didn't have my latest neuro results from last week, which showed growing paralysis in my left leg and the failure of my left sural nerve (to add to my right sural, left radial and ulnar and right ulnar nerves already damaged by vasculitis).
Growing tiredness, occasional night sweats, and a bit of joint ache creeping in tell me my PAN is starting to regress. It's not evident in CRP and ESR, which are all still in the acceptable range.
So my rheumy is going to have a conference with my neuro to discuss if they bring out the big guns again; cyclophosphamide. I was told biological treatments such as rituximab are not so good for PAN, so it might mean a longer treatment of chemotherapy pulses possible followed by oral cyclophophamide.
It's all a bit disappointing really, but I ain't going to let this thing beat me
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Wellsie
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Really sorry to read of your set back, Wellsie. You have an amazingly positive spirit, I do admire that. Let's hope the next blog we read of yours brings better news. Keep smiling, we are all wishing you well, and let us know what the medics decide to do!
What a brave person you are! All I can do is add my good wishes, to those already expressed above. I don't have to tell you to keep positive, because you already are, I'll only say that I'll pray for you- I don't know about your religious beliefs but surely It can't do any harm (and it may do some good).
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Strange symptoms coming off Pred
Do my symptoms suggest vasculitis
A flare or just 'symptoms'?
Steroid tapering. Can anyone identify with these symptoms?
Strange symptoms
