Vasculitis UK
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Symptom Regression

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 :)

8 Replies
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It is difficult. Hope they agree an approach shortly.

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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!

Ayla

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same hear hope all goes well for u

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thanks folks for the nice words

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Sorry to hear about your news. HUVS is truly a roller coaster of emotions. I will keep you and everyone in my thoughts. let us know how you are doing.

Thank you again for sharing. I think you will beet this, just donot give up.

Texas195260

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Dear Wellsie,

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).

My very best wishes to you

AndrewT

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Martyn,

Sorry to hear about this latest news. It is a warning to us all:- always be prepared to expect the unexpected where vasculitis is concerned.

Hope to see you on the big day and that you are feeling better.

Chris

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I love your spirit. NEVER give up. NEVER.

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