Cutaneous Vasculitis

[lou1972]

Hello

I would like to hear from anyone on here that has Cutaneous Vasculitis and is in the UK

I do not want to come across picky but I have a couple of appointments coming up and I would like to check a couple of things.

Much appreciated

[John_Mills Volunteer]

There is a page on the VUK website discussing Cutaneous Vasculitis but it is under the heading Urticarial Vasculitis - if this is at all helpful vasculitis.org.uk/about-vas...

[lou1972 in reply to John_Mills]

Hello John

I have seen the page before. I have had it myself since February 2015. I was just looking to hear from others who have also been diagnosed and share some experiences along the way

[John_Mills Volunteer in reply to lou1972]

Not sure if you are a member of the vasculitis fb group but there are quite few members in that group who do have Urticaria Vasculitis. But hopefully members in the HU community will share their experiences

[lou1972 in reply to John_Mills]

I am not a fb user. So not able to view any comments.

[Foss in reply to lou1972]

Hi Lou 1972, yes I’ve been told that I have CV , but not as yet had a biopsy as whenever it flares I’ve not been able to get an appointment. Consultant has now given me a bleep no to call, but so far haven’t had a flare.

Glad to answer any queries if I can.

Foss

[lou1972 in reply to Foss]

Hi

Have you not been able to take any photos of when you do have a flare up? I have had mine since 2015 but took 5 months to be diagnosed as had 3 biopsies and bloods. I have had about 11 flare ups since February 2015. Only my lower legs have been affected. I hsbe many scars and new sores. The lack of sleep due to being itchy and feeling hot and painful at times has been awful. I am now with Neurology waiting for a nerve conducting test.

Do you have a good gap between episodes. The longest I seem to have had is 2 months remission then starts again

I hate what this has done to me. I cant remember when I was normal.