Anybody any experience with HSP?

LegacyUser

I'm not looking for medical advice, my son has already been diagnosed with henoch-schönlein purpura.
Just wondering does anybody have any experience with this?

Dake123

Hi there
I have been diagnosed with HSP last summer and still have it. It started with a rash and seemed to trigger in hot weather, cold weather, playing sport and drinking alcohol. I'm 35 and getting very frustrated with having it a year on, it just came up out of the blue. Since February I've been in hospital with two different stomach infections and although the consultants say it's nothing to do with HSP my own research sees various HSP websites saying that stomach pains and vomiting is related. I've no idea how to get to the bottom of it and a lot of forums online are years old so I'm struggling to see how common this disease is. The rash cleared when I was in hospital as I was resting up for a whole week each time but you can't spend time resting up when the spots occur. Steroids also clear it but you can't use them all the time too. I try only use them if I'm going on holiday. My next plan is to try Chinese medicine as I've no other avenue to explore. My wardrobe consists of maxi dresses and trousers, I can't have bare legs anymore as there is always spots showing. Some people are saying coeliac disease too but I can't find any proof online, maybe Chinese medicine will identify the cure. The only consolation I can give is that I think with kids it tends to clear up after a few months to a year but that's just from my own research and there could well be cases out there that contradict. Let me know if you find anything that gets rid of it or keeps it at bay.

val2015 wrote: »

I'm not looking for medical advice, my son has already been diagnosed with henoch-schönlein purpura.
Just wondering does anybody have any experience with this?

Gee_G

Dake123 wrote: »

Hi there
I have been diagnosed with HSP last summer and still have it. It started with a rash and seemed to trigger in hot weather, cold weather, playing sport and drinking alcohol. I'm 35 and getting very frustrated with having it a year on, it just came up out of the blue. Since February I've been in hospital with two different stomach infections and although the consultants say it's nothing to do with HSP my own research sees various HSP websites saying that stomach pains and vomiting is related. I've no idea how to get to the bottom of it and a lot of forums online are years old so I'm struggling to see how common this disease is. The rash cleared when I was in hospital as I was resting up for a whole week each time but you can't spend time resting up when the spots occur. Steroids also clear it but you can't use them all the time too. I try only use them if I'm going on holiday. My next plan is to try Chinese medicine as I've no other avenue to explore. My wardrobe consists of maxi dresses and trousers, I can't have bare legs anymore as there is always spots showing. Some people are saying coeliac disease too but I can't find any proof online, maybe Chinese medicine will identify the cure. The only consolation I can give is that I think with kids it tends to clear up after a few months to a year but that's just from my own research and there could well be cases out there that contradict. Let me know if you find anything that gets rid of it or keeps it at bay.

Thank you for your reply, I have sent you a pm

mvl

might be a bit late - not too many posts inquiring about purpura on boards.

do wonder what specialist could be diagnosing a case of purpura - is it dermatologist or must be hematologist ?
thanks.

Dravokivich

You might be better speaking with a GP.

mvl

I have been sent to dermato for my daughter - but it takes so long, we would be seen next year.
Looks like a progressive thing, I am taking pictures as we wait.

But we're worried, so I am desperate to hear a valid consultant opinion, if the consultant can be hematologist and can see us sooner, I would want to hear about it.

Gee_G

mvl wrote: »

I have been sent to dermato for my daughter - but it takes so long, we would be seen next year.
Looks like a progressive thing, I am taking pictures as we wait.

But we're worried, so I am desperate to hear a valid consultant opinion, if the consultant can be hematologist and can see us sooner, I would want to hear about it.

My son was diagnosed by a paediatric team in the hospital. There was no dermatologist involved