I first noticed numerous red marks on my legs together with painful joints and generally not feeling well in December of last year.
I went to see my GP who thought it could be vasculitus and put me on prendisilone,and made an appointment for me to see a dermatologist. I had a skin biopsy in March and was
diagnosed with Leukocytoclastic Vasculitus. I continued to have breakouts of purpura weekly,and my GP kept upping the prendisilone to 40 mgs per day.
I was hospitalised on the 1st May suffering from extremely bad side effects of prendisilone,which caused very painful swollen ankles and legs and a weight gain of 3 stone of which majority was fluid collecting in my legs and ankles, my heart and even around my voice box,which affected the tone of my voice.The dermatology doctor came to see me and I was told to reduce the prendisilone slowly to zero which I achieved by 23rd May at the same time I was put on Dapsone with weekly blood tests.
I am still suffering extreme pain in my legs, which are swollen and red,pins and needles in my feet and legs, knee, ankle and hip joints very painful making it very difficult for me to walk. having been a very active person I feel I have no quality of life.I.am now on 100mgs and 50 mgs of Dapsone on alternate days and still no better,although Ihave had no further outbreaks of purpura.
I was wondering if anyone knows of a vasculitus specialist in or near my area of North Wales, or North West England as there are none at my local hospital Bangor.
Hope someone can help.