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Hello, I am a 34 year old woman and have been suffering from Cutaneous small-vessel vasculitis (also known as "Cutaneous leukocytoclastic angiitis", "Cutaneous leukocytoclastic vasculitis", "Cutaneous necrotizing venulitis" and "Hypersensitivity angiitis" ) for 2 years but was only diagnosed last year (after biopsy, blood tests...). I have been taking corticoid (Prednisolon) and immunsuppressive (azathioprin) for several months but I do not see any change except that I put on a lot of weight and that I start suffering from side effects of the azathioprin (bad urin analyses). I have had burning red skin rushes on feet, ankles, legs, back, lower belly and arms every second night for the the past 6 months. I try to relieve the pain by cooling my body off with cold wet linens or ice. Alcohol, exercice make it worse. I do not take contraceptive pill.
I am looking for experience sharing, and a positive way out Some reported that Azathioprin was very effective. It is not for me. Are you also resistent to such therapy? What else could be more effective? Would there be any non-conventional therapy that proved to work? For intance, I have been reading a lot on links between gut bacteria and Idiopathic Leukocytoclastic Vaskulitis. Diet could be curing (non-dairy product/gluten free). Have you tried?
Thank you for your answers
PS: I live in Germany and it is difficult to find english speaking groups or information.
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