HSP In Adults, Any Advice?

Hi, this is my first post on the Vasculitis site. My husband (52) was very unwell last September with a horrible rash from the waist down and bad abdominal pains. GP didn't seem to know what it was so I searched the internet for a similar rash & came up with HSP. Second GP agreed & he was sent to see a consultant. Many tests later (cameras, scans etc) they haven't found anything really nasty lurking (good) but did find patchy ulcers which could be due to the strong medication given for the pain or could be Crohn's. He's back on Omeprazole for 6 weeks before more tests.

He's much better than he was last September/October but gets the occasional relapse. Most of the info online relates to children are there any other adult HSP sufferers out there?

He did see a consultant who specialises in Vasculitis (& has another appointment with him in a few weeks) he said it would go but could take a while. What causes the flare ups, any ideas? I thought it might be stress but my husband thinks not.

Sorry to ramble on but don't know of anyone else with this. Any help would be appreciated. Thanks.

12 Replies

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  • HSP in Adults is rare, could we ask what blood tests have been done and where is your husband seen Mc89 just a little concerned because some types of Vasculitis can affect the gastro intestinal system...

    Susan

  • Hi, thanks for your quick response.

    Not sure what the blood tests were for but one was an auto-immune test. He has been seeing David Walker (Consultant Gastroenterologist) & Tim Jenkinson (Consultant in Rheumatology, Sports & Exercise Medicine) both at Bath Clinic or Circle Bath. He has only seen Mr Jenkinson once but has another appointment in 2 weeks.

  • if you would like to write to John at Vasculitis UK , he can help you with some questions to ask at the next appointment Mc89 john.mills@vasculitis.org.uk John is my husband and has Vasculitis , diagnosed 14 years ago and is chairman of VUK. He also has a medical background although he is not a doctor.

    We always find that it is a good thing to write a list or diary before you go to appointments, John and I still do this 14 years on.

    BW

    Susan

  • Thank you Susan I will do that.

  • My husband had similar, RA thought Vasculitis but dermatologist ruled this out, but couldn't say what it was. He's now back on methotrexate as only thing that calms it down, his RA is not active. However after seeing neurologist last week this specialist thinks he may have plaques on his brain, caused in part by the methotrexate. He is having some cognitive issues, has high CRP levels and is generally unwell. The rash appears under control. Will send pics and perhaps we can compare. It's been frustrating as no one seems to be able to diagnose what the cause is. Hope your husband soon feels better x

  • Hi, I am 29 and also have HSP and can understand what your husband is going through.

    It took a few specialists to decide what I had over quite a few months.

    That is also the thing I struggle with is what causes it. I think that stress does play a major part, but i do not think it is the sole cause.

    I am going to have an allergy test to see if any foods may cause the flare up.

    I can't help much more as I don't know myself, I have had HSP for 3 years and still trying to find out what brings it on. But I do think stress brings it out as it is an auto-immune disease.

    I hope you get some answers very soon :)

    Philippa

  • Thank you all for your replies much appreciated.

  • Hi - I had HSP last year, diagnosis confirmed by skin biopsy. My consultant was treating two other adults in the area and believes I caught it from a strep infection when I had a sore throat in December 2013; my rash turned into ulcerated legs from the necrosis of the skin and they took from January to July to heal. They are scarred, particularly where I'd had surgery on my foot a decade or so ago as the scar tissue was greatly affected. As well as steroids we used compression and elevation to help them heal and I lived in flight socks for around 3 or 4 months.

    I'd push for a skin biopsy as its the only way my consultant told me to be sure of a diagnosis of HSP - good luck x

  • Nobody has mentioned a skin biopsy yet, I will ask about that one. Thank you.

  • Hi Wendy - I am older - 44 - developed asthma in my twenties which caused a spate of chest infections in my thirties. Hardly need inhalers now, have regularly given blood (save for whilst on steroids of course) and never had any issue highlighted with platelets. Xx

  • Hi I was diagnosed with HSP in April 2013. Have been in and out of hospital and seen a multitude of Consultants. I still have problems, the main of which is chronic sinusitis and peripheral neuropathy in both feet. To be honest I don't see an end to it all. Although I have moved and have a new GP and she is really good. I take it one day at a time now. I was diagnosed at 59 years old. If you use Facebook there is a Closed Group Vasculitis UK. Become a member we are all great friends and help each other with advice and support. Take care xx

  • Thanks Basil 123, my husband has had another flare up this weekend. He doesn't have the rash at the moment main problems are stomach pains & muscle ache (he says not joint pain). He's had to go into work but it is a struggle. Thanks for your kind words.

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