Possible vasculitis

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[oldtimer2]

Interesting! I was also hospitalised with low sodium in August and then developed a vasculitis rash on my legs, gradually worsening until they were swollen red and very painful. It was suggested that the apixaban (anticoagulant I was put on (the low sodium triggered artial fibrillation) might be the casue, but the timing seems all wrong for that - and it hasn't improved since changing to riviroxaban.

The rheumatologist I usually see for my Rheumatoid Disease agreed to meet me in the Day Hospital (to get an emergency consultation) took photos (great excitement at what they looked like) and start on raised dose of steroids. I've had masses of blood tests and am ANCA positive. CAT scan of whole body doesn't reveal anything else like a hidden cancer. I'm waiting for a biopsy with the dermatologist and checking my urine for protein (and having quantitative tests intermittently).

I found that I really had to push hard for anyone to do anything. Everyone said it was really interesting, but then....nothing. I had to look it all up and suggest tests and management. I've tried lowering the steroids, but had a prompt return of the lesions and went back on the previous dose.

I don't know if any of that helps you? Any similarities? But I would advise you to be as pro-active as possible. Rare conditions seem to produce paralysis of thinking as there are no protocols to follow!

[Hidden in reply to oldtimer2]

Hi, thanks for the information. What dose of steroids did you go to? I have upped from 8mg to 20mg but no difference as yet. Will have to wait for results of bloods I expect.

[Suzi70 Administrator Vasculitis UK]

I do think you ought to find a doctor who has understanding, knowledge and experience of vasculitis. Have you contacted the VUK helpline? They maybe able to help with advice and sign posting. vasculitis.org.uk/helpline

[Hidden in reply to Suzi70]

I think I'll have to wait for a definite diagnosis first. Thanks for your input.

[Suzi70 Administrator Vasculitis UK in reply to Hidden]

You can still chat with someone via the helpline , sometimes it helps to chat with someone who understands

[oldtimer2 in reply to Suzi70]

How do I find someone who actually knows about vasculitis?

I've done a search for consultants who consult privately but it looks very expensive possibly £220 for a first consultation and, of course, any tests will be on top of that. And that consultant has NHS faciltities even further away - a two hour journey by car.

[Mooka in reply to oldtimer2]

Call the vasculitis helpline and they can advise you. If you go to someone who specialises in vasculitis they can rule it in or out as a diagnosis- at least that’s the theory. Good luck if you have vasculitis you need some treatment.

[P123sue]

hello I have gpa vasculitis, it manifests as lung and nasal upper respiratory.Im currently anca neg as Iv had my rituxamib plus methotrexate injections weekly on low dose steroids ( sometimes I’ve anca pos if I’m unwell) .i went on for years with these issues local hospital didn’t know what it was .one doc suggested gpa(Wegners) but they admitted they didn’t know enough .I looked it up the symptoms fit I spoke to vasculitis uk who gave me a list of docs near me who specialised unfortunately the waiting list was so great so I paid for private consult (£250 at The Spire) and they diagnosed me amd I got the gp to refer me to that doc at the main hospital trust nearest to me where he also worked and it was a bit of a hairy process as it wasn’t local and the gp weren’t receptive to the idea but they did do it .so Iam now fairly stable and doing ok so I would give vuk a ring and see if they can help .i think the money i paid to see someone who knew what they were on about was worth it to get me on the treatment to minimise further damage to my nose etc . And get me on the road to feeling better

[Hidden in reply to P123sue]

Thanks, my rash and swollen feet have gone with antibiotics and hydrocortisone cream. Still waiting for blood test results! I think it was an infection.