23yr Old HSP (Student at Uni) IT DOES GET BETTER!!

Thanks for giving me hope again am bearly 16 years old and for me being diagnosed with HSP about 2 weeks ago and it made me feel scare and down but now I know that am not alone and that their is going to be a normal day for me again. Reading this made me also see that I need to be stong and hopeful to be my old me again and the feeling of seeing the rash everyday does let you down and the pain of just having to do an effort to walk and not do sports is something that really is scary but now I have hope of getting better Thank you

I’m now 45 and was diagnosed with HSP 15 years ago. I had been getting the rash a lot and then was hospitalized after a few Guinness at a party when the rash spread and the swelling was so bad I couldn’t walk. They tested me for everything and eventually diagnosed HSP.

I still get flare ups after a cold or sore throat, but what I wanted to share was that after trying lots of treatments I found that Minocycline works for me. It is an antibiotic typically used to treat acne. Now when I get the start of a rash I head to the Doc to get this and it stops it spreading. I usually have to take it for a few weeks but it keeps the rash under control and the aches in the knees clear up as well.

Giving up the alcohol and eating unprocessed food seems to help as well, but the minocycline means I still get the odd Guinness or 6.

It does get better. Hang in there.

I got diagnosed with hsp about 5 years ago, I'm now 27. I first saw a rash in a taxi on the way home from a night out and didn't think much of it, then in the morning I discussed it and eventually decided to go to the hospital, they had no idea what it was so sent me home and the rash faded.

At this stage of my life I was drinking desperados, so the next week I was in the pub, had a bottle of desperados and the rash came back again but worse, I had maybe 2 more and my legs were covered, but I'd also been smoking so couldn't decide which one of the 2 it was.

Eventually found out it was the desperados and it got to a point where I couldn't walk and had to go to hospital, I cried to my girlfriend thinking if I would ever be able to properly run again, play football again etc. Hospital did a few tests and I was sent home, slept on it and in the morning I had recovered miraculously to the point I was walking normally, still a little sore but to say the night before I was needing a wheelchair, I was pretty delighted.

Within a few days the rash had cleared up. Doctors mentioned hsp and confirmed it was that and I was in and out of appointments at the hospital for the next few months having tests, then basically told me you have to come to terms that this is a lifetime disease (have read a lot of pages saying it goes away however). I also changed my drink to lager or vodka, this really helped and it didn't flare up nearly as bad as the desperados, but still did sometimes.

So overall from my 5 years of having it I can say from my experience, it started off really bad anytime I drank, but after a few weeks it gets better and it's as if your body does learn to cope with the alcohol better. I drink once or twice a week at weekends. If I don't drink for a few weeks and then have a night of drinking it comes back worse than if I were to drink in consecutive weeks (this could be a coincidence). Sometimes it will come back when I drink a little bit, sometimes really bad to the point I can't carry on drinking and have to go home, it can make my testicles swollen when it gets really bad, which is pretty weird and horrible. Or sometimes it won't come back at all no matter how much I drink. I went through a phase of about the last 2 years with hardly any effects from drinking tbh, but recently it's started coming back again. It seems like it goes through phases. Sometimes I also get purpura on my feet if its hot and I've walked far making my feet sweaty, but nothing serious.

It's really good reading other peoples stories and knowing we aren't all alone, so thought I'd put mine up. Wish this thread was more active so everyone could keep others updated.. A facebook group would be useful

I know this is an old thread. I also had HSP in college and discovered that most alcohol triggered a flare up. But like you, I too discovered that vodka and other clear alcohols were OK. It took about four years for mine to go away. This was over 20+ years ago. I started researching it again because my college age daughter now has lupus and doctors say she was higher risk because I had an autoimmune disease. While I feel

bad i passed on my flawed genes, at least I can really identify with her challenges. Unfortunately lupus doesn't go away.