Annoying red, dry patches ...

[CHARLIE49]

Hiya,

I have Rheumatoid Vasculitis, diagnosed two years ago.  I have had dry, red patches on my legs for years and assumed it was a form of psoriasis.   When I was eventually diagnosed, it was confirmed that they were part of the Vasculitis.  I was put on a high dose of steroids, which I am now weaning off of (6mg daily reducing by 1mg per month), plus lots of other medications.  The dry patches cleared up but since I have been reducing the steroids, they are coming back.  I am due to see my consultant in May (hopefully).

I would be grateful for any advice. 

Thank you

[PMRpro]

It sounds as if you have reached a pred dose at which it isn't enough to manage the vascular inflammation that causes the red patches. Did you notice at what dose it reappeared? Keep notes - and take some pictures if possible.

If it were me I would contact your rheumy's secretary - or do you have a specialist rheumy nurse? -  and ask if it is possible for the May appointment to be brought forward, and certainly to be sure it will happen when it is meant to and not be postponed for months. If you have been well managed it would be a shame to let a flare get away and have to start over again.

[CHARLIE49 in reply to PMRpro]

Thanks PMRpro.  I have taken your advice and am waiting for a call back from my Rheumy nurse.  Am still learning about this pesky disease!!!  I was just concerned about being on steroids for too long. 

I've tried to bring May appointment forward but due to the doctors strikes they are running well behind. 

Will let you know how I get on

[PMRpro in reply to CHARLIE49]

I've been on pred for nearly 7 years - you need what you need!

[Suzym2u Moderator Vasculitis UK]

I agree with PMRpro Charlie49 

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I have rheumatoid vasculitis, I also had a hard, lumpy and very itchy rash called  nodular prurigo, which my rheumy said was part of my vasculitis. I was started on 40mg pred, with 5 1,000mg methyl pred infusions. Gradually reducing the tablets down to 10mg, which I am still on 19 months later. I'm still on this dose. I also had 120mg methotrexate injections with 10mg Leflunomide. I had to stop the methotrexate due to a high liver function blood test, with my Leflunomide up to 20mg. This is what I'm on at the moment, and my rash is stable. I've been put on hold for the time being due to acquiring Osteoporosis. Now on Alendronic Acid. Hope your consultant increases your steroids to a dose that gets your rash settled.

[CHARLIE49]

Hi guys.  Thank you so much for your replies.  I spoke to the nurse yesterday and she told me to increase the pred.   

Have had a really bad week, but it's my birthday tomorrow and am determined to go out with my wife to celebrate!

Thanks again.