Strokes Again!! Update on mine and cerebral vasculitis.
I thought it was time I should give a wee update on how I have managed since my stroke at the end of October and it felt the right time as Ka...
Coping Strategies for Waiting to be Seen
Those of you who were not in hospital when you were treated by rheumatology for vasculitis, how long did you wait and how did you cope in the...
Getting a diagnosis
After getting in touch with Vasculitis Uk I went to my GP and then had blood tests for ANCA....
Question about nausea and Vasculitis
so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. my question is, does this type of...
Recommendations for ANCA vasculitis specialists near London?
Would anyone have any recommendations for vasculitis specialists in Churg Strauss Syndrome / EPGA or GPA in or near London?...
How many years have you got vasculitis?
My son is 12 years old, has MPA and is doing quite well excluding diarrhea, fatigue and a glomerunephritis from the disease....
Study suggests Azathioprine may increase risk of relapse in some AAV patients.
Since going on Retuximab 2 years ago, I have gone from ANCA positive to ANCA negative and haven't relapsed since ( fingers crossed )....
Coping with a vasculitis relapse
I wanted to write a bit about coping with a vasculitis disease relapse. Fell ill in 1994 aged 22, diagnosed with cerebral vasculitis in 1997....
Diagnosed with GPA over 2 yrs ago.
Hi, I am 63 and have been on the usual cyclophosphamide and prednisolone to treat Wegners granulomatosis. Changed to azathioprine after 8 mon...
Trying another tiny steroid drop soon
That is not normal for vasculitis patients, but my cerebral vasculitis disease fights back badly at each drop....
GPA sufferer seeking financial advice
Hi, I am 49 years old and have been battling with GPA for 2 and a half years now and despite all the steroids, 16 pulses cyclophosphamide, 8 ...
Very anxious about having IV Cyclophosphamide. need to hear of your experience with this drug.
currently my lupus is not under controlled and my lung capacity is diminishing. The docs hope the infusion will kick my lupus into remission,...
Hi All, I saw my vasculitis consultant today who discovered that the tops of my hands and feet don't seem to be quite as sensitive as they pe...
Does anybody have vasculitis affecting the brain causing neurological stmptoms ie pins and needles and leg cramps...
Vasculitis in legs
Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!!...
Waiting on a diagnosis... Looking for advice please
I'm currently waiting on a diagnosis and vasculitis was the only thing my doctor suggested I may have, although she did test my bloodwork for...
My story ... journey to a diagnosis
Having been transferred to a specialist kidney unit, I was diagnosed with ANCA related Vasculitis....
What do you think are the unmet needs in Vasculitis?
Vasculitis UK are part of UKIVAS which is the UK and Ireland Vasculitis registry. The proposal is that a clinician does a presentation from t...
Aortitis, now might have to start cyclophosphamide
My consultant wants me to think about possibly starting cyclophosphamide, as my inflammatory markers have stuck for some time now at around 1...
1st dose of Rituximab
Had my 1st dose of Rituximab yesterday and it all went as well as it could've. I probably could've went back to work today but feel a little ...
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