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...
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 ...
Azathioprine for PACNS?
Last month I was diagnosed with PACNS, or Primary CNS Vasculitis. I've been taking daily prednisone and the plan was for monthly infusions of...
Glacially slow tapering continuing
But my cerebral vasculitis isn't playing nicely, even though high dose Cyclophosphamide infusions in hospital in summer 2012 did give it a fi...
Lost in the world of Vasculitis
I’m a newbie on here and to be honest to the whole world of Vasculitis. My dad has diagnosed with Vasculitis back in October when he was admi...
Anyone have any thoughts on this rash? It's on my arm, but also on my side and my thigh, although a bit less severe....
Leg lesion biopsy result
Evening/morning all Letter from dermatologist 8th June Received today Dear Laura, This is to confirm your biopsy showed very little, although...
Anca vasculitis and diet
Hi everyone, my husband has anca vasculitis and I've been trying out Holistic approaches with him....
Wegener's Granulomatosis with polyanginitis
Hi all, I have had this disease since 1990. I'm doing ok, but have suffered a lot of destruction to my sinus cavity, my nose and my eyes have...
Early retirement because of Cerebral Vasculitis
Hi, my husband's suffers from Cerebral Vasculitis and is under cyclo infusion....
Hello, With reference to John Mills's article in the AGM magazine regarding how poor Wales NHS actually were in treating Vasculitis patients ...
Could toxic medication cause positive ANCA??
A newbie here—just joined. Could you please explain to me if it is possible for me to have tested positive for p-3 c-ANCA six months ago but ...
Advice re azathioprine and alcohol please
Hi Looking for experiences and research/advice on alcohol and azathioprine please. Partner just completed 6 cycles of cyclophosphamide having...
Mononuritus multiplix enquiries
Hi every one; Im new here . I was diagnosed with " immune-mediated neuropathy " and some doctors mononuritus multiplix ....
Ear / Hearing complications?
Hello Friends, I am looking for information from anyone who is having ear problems with wegeners granulomatosis?...
Lupus, factor 5 lieden, raynauds, multifocal long bone avascular necrosis
They keep telling me i am only person in country to present with lupus avn this way and qm having difficulty getting my head around it....
Skin & blood results
) My skin biopsy has also come back showing Urticarial Vasculitis - the dermatologist said that's what they were looking for in relation to t...
EGPA/Churg-Strauss? New Member, recent Diagnosis
Hi All- I'm new to the community. is there anyone else here diagnosed with Eosinophilic Granulomatosis Polyangiitis ( EGPA)/Churg-Strauss?...
I have been suffering a number of flares which have in the past been treated by an increase in steroids however last weekend I suffered a bad...
Hi all UK vasculitis sufferers/ Rituximab
If you are on Rituximab could you tell me how many doses/infusions you have and at what intervals, please? I had two doses/infusions spaced a...
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