New to vasculitis

[cartwheels]

Hi

I recently got DX with vasculitis after suffering a terrible skin rash after my 6th covid jab ,I'm still not sure that's the cause but that's what dermatology are telling me .

Anyway 4 months on still got outbreaks mainly face ,chest back spots and dark patches around my groin area. I have lost wieght probably through stress and worry as this is probably the most stressful thing I have encountered and I have blood cancer which is still in remission thankfully so not that but in comparison the stress of vasculitis is worse for me . I have always had good skin never had acne etc so this is new to me . I have been on oral steroids and strong antihistamines which worked and cleared almost all. The dermatologist is happy and told me I'm healthy and my skin is good. But I still have these spots on my face , scalp chest back etc but he says it's normal,well not normal for me that's for sure . So I'm joining this group to learn and find out more . My vasculitis is skin only x-ray have shown internal is clear. So any help would be appreciated I have a few pictures of my current spots etc which I'm told to treat with antihistamines only .

Many thanks

Jason

[Mooka]

Hi and welcome. I’m sorry you find yourself here when you’ve been through so much already. I can’t help you I’m afraid as I have a different type of vasculitis. Have you visited the vasculitis U.K. website? They also have a helpline and maybe able to help you or point you in the right direction. Does your specialist know much about vasculitis? It is usually diagnosed via a biopsy and as far as I’m aware any internal organs affected wouldn’t show on a x Ray. Good luck and let us know how you get on and if we can help you.

[cartwheels in reply to Mooka]

ThanksYes he is experienced in dermatology 30 plus years,no biopsy just attended clinic after referral from doctor and chest x-ray. I'm just looking for advice as although he is happy that most of the rash went from a ten days course of steroids and has told me to manage it with antihistamines as and when which at present is daily and I still have face bumps and few spots on chest etc. I'm on a step learning curve which I find the best way to deal with problems if I understand it then I can deal with it.

Thanks

[Mooka in reply to cartwheels]

I totally agree with you. Knowledge is best but be careful of the dodgy sites. Have you seen this

vasculitis.org.uk/about-vas...

Hopefully someone else with skin vasculitis will be able to help you.

[Suzi70 Administrator Vasculitis UK]

this page on the website might help with some information vasculitis.org.uk/about-vas...

[cartwheels in reply to Suzi70]

Thanks I have already looked and been on this page very helpful, my problem is I don't believe my DX I appreciate my dermatologist but looking at all the pictures of various small cell vasculitis mine doesn't quite add up . I think I have vasculitis and maybe a bacterial infection . And I believe the vasculitis to have started from me being ill in November and getting prescribed antibiotics and steroids cream for the rash that I had , which worked to nearly clear it , but after a few weeks it was bad again and then more antibiotics etc ,then again and then I got to see a dermatologist who put my vasculitis down to my 6th covid jab which I had prior to the rash starting. But I believe the rash was more bacterial at first and then all the antibiotics thrown at me but not in a long enough course to completely clear the rash had lead to vasculitis not the COVID vaccine imo . Currently back on another 10 Day course of steroids my second lot in two months and really fed up . I have always had good skin and to have this is really upsetting. I'm trying to get another appointment at dermatology as I want to get to the cause and a proper DX as so far all he had put my DX down is visual. I have had no skin bio or urine sample etc hence my doubts on my DX .

Many thanks