It all started when i was 6. I started having spots apear all over my body and i was bleeding internally aswell as external with ulcers abd lesions. This was diagnosed with vasculitis henochshonline purpura. I took dapsone for a long time and was in remission through all of my teen years.
Then i came to adulthood. At the age of 23 i started having spots flare up and disappear again right up till 2 years ago.
This leads me to present day almost.
2 years ago i had the spots come back so badly that i had 8 holes on each leg sone the size of oranges and just as deep. I was treated with prednilone which seemed to work for a week. The spots disappeared but the holes remained. Every few months the spots come back and i have to go on prednilone again i still have one hole in my leg but now its gotten to a point that whenever i drop my dose of steroids tge spots start to reapear again.. Drs font understand why it keeps coming back and are confused as biopsy shows normal in the lesions. And yet i have these vasculitis looking holes. Spots and blisters that haunt me ever day.
Soon as i become stressed (which the spots make me anyway) or active (cleaning tge house or taking the children to school) or even if i get ill with a cold it seems to make the situation much worse.
Has anyone else had this problem?? And how was it dealt with? If its been delt with. I feel very alone with this condition and a little afraid as it seems no one anywhere can relate its an ongoing nightmare that doesn't seem to have an end
I have given a pic of what it looks like when it starts up. Does anyone have a rash like this and know what it is??