Experiences with

Vasculitis

Vasculitis can be severe, even fatal if not diagnosed early and treated correctly. #vasculitis #raredisease #RareDiseaseDay

#vasculitis #vasculitisawareness #RareDiseaseDay2025 #RareDiseaseDay #raredisease #equity

- Has anyone experienced eye symptoms as the first manifestation of vasculitis? - What sort of tests do I need to request to rule out or confirm vasculitis? - Do other people’s symptoms usually come and go (or did they, pre-diagnosis)? Thanks very much for reading :)

I was diagnosed with Vasculitis GPA last month. I've never had any hospital treatment before so a little nervous. I'm curious about other people's experiences during their first Rituximab infusion?

But, I'm not sure he will know anything about vasculitis (the test was done as part of a full autoimmune panel, and a different opthalmologist was the one who suggested vasculitis).

Hello, 6 months ago my daughter was finally diagnosed with IgA Vasculitis after a couple of years' of debilitating stomach pain and an outbreak of purpura in February of this year. At the time, she tested negative for ANCA.

Cant find any reference to high blood pressure rising rapidly with VASCULITIS, in fact the whole list of VASCULITIS symptoms on the net or anywhere I search, seem airy fairy, with no real pattern involved

The GP couldn't discuss any further "I know nothing about vasculitis and have referred you to Rheumatology", but she doesn't have an appointment yet and is on a 7-month waiting list. So, I tried googling myself to see what this means.

hi everyone, I feel the need to share some important information. I was diagnosed 5 years ago with this rare disease and spent 4 years on a rollercoaster ride with all the prescribed medication and their side effects. Everything from depression, anxiety , exhaustion, depths I never want to sink to again

I would take all the usual precautions of drinking plenty of water, regularly getting up and moving around and wearing compression socks but don’t know how I would normally get affected by going on such a long flight even without the complication of Vasculitis and steroids.

Hi, just wanted to know if anyone out there with vasculitis GPA, is experiencing erosive arthritis in their hands? I have over the last year experienced a lot of pain in my hands and have a growth on one of my fingers, which is apparently a soft tissue swelling.

I live a quite busy life but am always tired as vasculitis gives me chronic fatigue and bad pains in joints. Now apparently a lot of the pain is I'm told arthritis. What I am asking is, does vasculitis cause arthritis ? Just wondered if anyone else has found anca to be so painful?

he has had GPA vasculitis for 7 years now and received usual medication ie cyclophosphamide, RTX and AZA before being on MMF. He has remained stable on this regime and his blood works have all have been good.

I was helping another cerebral/CNS vasculitis patient tonight about incontinence. Which can be a common symptom of brain vasculitis, whether a primary CNS/cerebral vasculitis, or secondary brain involvement from a systemic vasculitis like GPA.

May - Day 28 Vasculitis Awareness Month HUV is a more severe type of vasculitis and almost always affects females. Vasculitis is a challenging illness to live with: ''Living with vasculitis is a hard task with a lot of ups and downs, and the future feels quite frightening.

CG as its referred to is a form of multi vessel vasculitis so symptons end up pretty broad. Why so few cases is a lot of researchers believe there a lot of undiagnosed cases out there.

Hello everyone, after nearly 3 years of struggling with severe fatigue, inner ear issues, vertigo, headaches and inflamed arteries in various areas, specialist and GP are testing for ANCA vasculitis. How conclusive is a positive ANCA blood test ?

(I have read all of the vasculitis UK website, studied recent papers written in The Lancet, been on the Internet, but I just don’t feel I’m getting properly educated, & am still feeling very out of my depth).[/i] [i]4) Should I understand and ask for the results of my blood tests?

I have renal limited ANCA vasculitis. Thanks for any input//

May - Day 30 Vasculitis Awareness Month - Large Vessel Vasculitis is rare, can be complex and can be difficult to diagnose as symptoms may confuse the clinicians. Take a moment to read Maxine's story!