Urticarial Vasculitis

[kazmac45]

Hello. I'm new to this part of the forum, having only been in the Lupus UK part until now.

I've had lots of tests for Lupus and despite my CRP and ESR being sky-high with my first symptoms (joint pain, vasculitis rash etc) 2 years ago, my ANA was negative.

This time my ANA is positive (even after further titres) but my CRP and ESR are normal.

I've had an unexplained again rash since last October and have been attending dermatology since March.

Various creams and antihistamines have had negligible results.

I eventually had a skin biopsy and my rheumatologist did a few more bloods, including Vitamin D.

Then he completely dismissed me and sent me on my way.

I saw my GP today, having chased these results (both only back last week and both consultants are on holiday) - and he told me I have pretty much zero Vitamin D! My level is so low, it's unrecordable.

My skin biopsy result shows Urticarial Vasculitis but my GP didn't want to try to interpret the more 'technical' results in the report.

My dermatologist said that Vasculitis is what she was looking for in relation to all the Lupus tests I've been having.

Can anyone share similar experiences??

I'm at my wits' end and feel like nobody takes me seriously except my GP!

I'll also be asking to see a different rheumatologist if I've to go back because the one I saw was horrible and made me feel stupid and worthless.

I have no idea what to think about all this and 2 years is starting to 'tell' on me a bit 😢

[Hidden]

Hi,

That all sounds awful but unfortunately it's a fairly common story. There are 3 different types of Urticarial Vasculitis, some confined to the skin but others causing systemic symptoms. Here is a link to that page on our website which explains, interstingly the most severe form of Urticarial Vasculitis ( HUVS ) can be strongly associated with Lupus.

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

I hope your GP has started you on high dose Vit D supplements as low Vit D may be causing your joint pain.

You are welcome to phone or e mail the VUK Helpline to talk things over with either John or myself. The most important factor in getting diagnosed is the experience of the Consultant you see, at the very least we can point you in the direction of an appropriately experienced Rheumatologist.

The answer is out there, it's a question of finding the right Consultant.

[Hidden in reply to Hidden]

The helpline details

vasculitis.org.uk/helpline

[kazmac45 in reply to Hidden]

Hi Keyes. Thank you for your reply. I've done some research and I'm also a nurse, so I'm getting my head round this whole thing because it's happening to me, not a patient.

I've been to that page already at work 😊

I'm staggered at how horrible the rheumatologist was and am keen to hear what he has to say now that my Vit D result is back.

Yes, my GP prescribed high dose Vit D today so hopefully things will start to improve.

I'm also keen to hear what the dermatologist says now my biopsy result is back.

I'm just not buying some of the explanations I'm getting and the waffling instead of saying outright "I don't know".

I might try to ring to have a chat with someone at some point.

Thanks again 😊

[kazmac45]

Well, my surgery told me today that THEY have a letter from my rheumatologist, but I don't!

It seems he's leaving dermatology to deal with my "eczema" and has apparently discharged me!

No follow-up to discuss the bloods he requested or to even say he's discharging me 😡

Two bloody months I've waited to get this news today!

I need to get the letter and read it then take it further.

Gutted 😢