Newly diagnosed

Hello - I have just been diagnosed with vasculitis after having lower leg sores since May this year. A recent biopsy did not confirm which type it is. I have been off work since mid-Sept but I'm climbing the walls now and am going back next week. The sores are much better now though I still have a few that have not completely healed. Any advice would be gratefully received. I'm so glad to have found this website.

4 Replies

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  • Hello Loobyloo

    Are you on any medication?

    There are a number of the vasculitic diseases where the skin is involved. Have you looked at the Trust's website? The individual diseases can be found at: vasculitis.org.uk/about-vas... There are some photographs which patients have provided and these may show something similar to what you have experienced.

    The main ones where there is skin involvement seem to be: Takayasu, Polyarteritis Nodosa, Kawasaki (but that tends to affect children), Churg Strauss, Microscopic Polyangiitis, Wegener's, Henoch Schonlein and Behcets.

    PatriciaAnn

  • Dear Loobyloo,

    I can't add much else, to what's been said above, only please DO look at the website and feel free toask any further questions, you may have (MAY have!!!), to this forum. A word of warning; by all means 'look up' things on-line but please DON'T assume that everything you read applies to yourself. Every one is different and what is true for one person is not necessarily true for another.(Sorry to 'harp on' a bit here)

    I hope now that you are properly diagnosed even if it is 'uncatagorised vasculitis', as is mine, your condition can now be properly controlled.

    Good luck anyway, please stay 'in touch'

    AndrewT

  • Thanks Andrew - I'm waiting to be seen by a dermatologist as an urgent case but that's been nearly two months now!

    PatriciaAnn - I'm currently on a reducing dose of steroids as well as other stuff to protect the stomach and bones. I can apparently stop this medication when I finish the steroids. I also have high blood pressure (medicated) & was diagnosed Type 2 diabetes in Jan which is diet controlled. I'm really fed up because until this time last year I never took so much as an aspirin so can't understand where all this has come from.

  • Hi, it is most important that the diagnosis is made clearer. I presume the diagnosis was on the basis of a skin biopsy. Do you, or did you, have any other symptoms at all before taking the prednisolone? Prednisolone, especially in high doses, can suppress symptoms and mask important indicators in laboratory tests. It is most important to stress that steroids on their own are not an effective treatment for most types of vasculitis. Treatment for different types of vasculitis are very different. Are the doctors sure the ulcers are not diabetic leg ulcers - a common complication in diabetes. In my experience, dermatologists are not good at looking at the whole person, they focus too closely on the skin problem rather than looking for the underlying cause.

    Best wishes

    John

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