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Does any body have experience with Henoch-Schonlein Purpura (HSP)?

Posted , 3 users are following.

sarahxemily
sarahxemily

Hi,

I was diagnosed with HSP six months ago after being quite unwell. It started with a pin-prick like rash and I was treated with Prednisolone for around three months (and now I'm three stone heavier!) but it all came back once the course was stopped.

Now I'm on Methotrexate which is very good at keeping the symptoms at bay but it makes me vomit a lot.

I have had kidney problems but it seems like it's all getting better and it's all being monitored by blood tests.

The main problem for me now is the ulcers that have been left on my legs. I have one large ulcer on each ankle, and they both get infected regularly (once a fortnight) it's like they just get infected as soon as the Flucloxicillin (antibiotic) course ends. None of the doctors seem to know what to do about it; which dressings to use, creams etc....the nurses I see do their best but this is such a rare illness I'm pretty sure they haven't seen this before.

If anybody has any advice I would be so very grateful! 

Thanks for reading xx

0 likes, 3 replies

3 Replies

  • marc19
    marc19 sarahxemily

    Posted

    are you able to go to an actual "wound clinic"  I'd be surprised if a real "wound clinic" hasn't seen this before, or at least some form of vasculitis.  Most people/places have that specialize in it.  You might want to look at getting a few second oppinions.  

    wish I was more help.  

  • lucynewas
    lucynewas sarahxemily

    Posted

    Which country are you in? If you search for messages with my name you'll find details of all the things we've tried.

  • rocky31676
    rocky31676 sarahxemily

    Posted

    Prednisone causes immunosupression, which means you ill be prone to infection in that duration. Try to not take it for more than 3-4 days, of course, in consultation of your doctor. 

    They say it is self-limiting but rare disorder. 

    But the flres up causes problems depending on the age of the sufferer. 

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