Posted , 7 users are following.
I'm 20 years old and I've had HSP for four months (after initially been told it lasts 4-6 weeks) since my diagonosis life has been a nightmare. I was hospitalised with the most severe abdominal pain I have ever felt; morphine couldn't even settle it. I lost 10kg and was altogether a shell of my former self. Now I'm still taking steroids which I have been on for since January, they're awful and have made me gain so much weight primarily on my face and abdomen which is terrible since prior to this disease I was obsessed with fitness and have had to watch my body and appearance be destroyed in front of my eyes, it's made especially difficult with the vasculitis which never dissapears. I am sick of looking like a freak and having to avoid doing things I enjoy like drinking with my friends, this disease has even caused me to quit university. It seems like a cruel cosmic joke to live normally for twenty years and then have everything taken away. I'm curious of any adults who have maybe got completely rid of this disease and if so how long did it take? Also what medication or treatments are effective especially for getting rid of the rash which is an insistent burden; I have looked into rituximab and want to see a specialist about it but currently the frankly useless unsympathetic doctors want to try me on azathioprine. Any info would be much appreciated.
0 likes, 17 replies