Experiences with

Vasculitis

Shanali Perera says: “I am a contemporary artist, educator, retired Rheumatologist, and a person living with vasculitis, based in Manchester, UK. I am doing a walking challenge to fundraise for Vasculitis UK, to support my Vasculitis community.

My wife Susan has written my vasculitis story for the VUK website for those who have an interest. https://www.vasculitis.org.uk/john-mills-story

This guidance is meant to advise NHS health boards on the way they design services for people with these diseases, including lupus, scleroderma, vasculitis and Sjögren’s syndrome. Learn more and access the survey at - https://www.lupusuk.org.uk/rairda-wales-survey/

Due to circumstances beyond our control the Vasculitis UK AGM has been postponed, notification of a new date will be posted via the VUK website https://www.vasculitis.org.uk/ https://www.vasculitis.org.uk/news/agm-postponed

She’s testing me for vasculitis Aswell now. My eyes were blood red shot today and the rash was present with slight swelling she has advised me to try some new eye drops and bathe my eyes twice a day for a week or two and if no better then she’s referring me to opthamology.

This guidance is meant to advise and guide NHS health boards on the way they design services for people with these diseases, including RAIRDs like lupus, scleroderma, vasculitis and Sjögren’s syndrome.

Can anyone give me information on Vasculitis, treatment and prognosis.Thank you

Do we know if this is in fact the case for Vasculitis patients? I have received both my vaccinations and am due for a further rituximab treatment in three weeks. This was not suggested to me and I have not been tested for antibodies.

I’m am just interested to see if anyone was diagnosed with idiopathic chronic urticaria but it turned out to be urticaria vasculitis? I was diagnosed with urticaria at 12, and since then have had 3 flare ups that each last a year or two.

I’ve recently been diagnosed with vasculitis. We’re still unsure of what kind. Or if there’s an underlying co-morbity. My calf’s were hurting really bad at night but now I’m having severe toe pain and locking and then cramping of my toe joints. It’s usually at night although I have during day to.

Tuesday 8th June at 11am BST "Living with GCA" with vasculitis specialist nurse Georgina Ducker (based at Norwich and Norfolk University Hospital).

I have Multiple Autoimmune Syndrome (pernicious anemia, undifferentiated connective tissue disease, chronic inflammatory demyelinating polyneuropothy, sjogrens syndrome autoimmune encephalitis, and vasculitis), and dysautonomia.

Will be talking to the vasculitis people next week for info. Thinking that this forum may enlighten me. Have been off Pred since July 2020 and all Lab reports are good; but still feeling some shoulder tension. All input appreciated.

There is some opinion that my Vasculitis caused this but my bloods have been ok. Does anyone have any experiences to share about coming off meds?

Just to make things more difficult, I was diagnosed with vasculitis ten years ago, have developed Addison’s disease, and also have occasional atrial fibrillation, so I’m anxious to know whether any of these are being taken into account, or whether they think I’m just a fussy minor heart patient who is

https://ard.bmj.com/content/60/11/1058 Nothing dramatically new but interesting.

Hi everyone, I’ve recently been diagnosed with EGPA Vasculitis after suffering different symptoms for a few years and then fighting for my life at Christmas with severe pneumonia.

What fruit is good for vasculitis?

Will run it past my GP but to be honest this place I find excellent for anything vasculitis related. All the best Mike

I’ve got all the symptoms and diagnosis to put me here but my pcp and dermatologist agree even with my vasculitis apparent my blood tests will lose the interest of the rheumatologist once I get back to one. Long delay in getting to see one. Then what?