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just thought I'd post about my current and on going experience with HSP.

I'm a 21 female at university, fairly heathy, good fitness levels. 

About 6 weeks ago, on a monday, I became ill will a regular virus, I had high temperatures and it just went away on it's own; nothing to really worry about/be concerned with. By the friday I was back to normal. Saturday evening I noticed a couple of tiny spots by my ankles, however thought nothing of this, as I wear sports tape for Netball and sometimes when I rip it off it can leave marks like this. The monday morning I went for breakfast with a friend and had the most bizarre stomach pains, couldn't eat anything and left early to go home, before my lecture I had a hot water bottle and ibuprofen and this seemed to help. By the time I was home from my lecture I had developed this rash over the bottom half of my legs, it looked liked stinging nettles almost, it was hot and super itchy. I rang my mum (who used to be a midwife/nurse and now works in management for NHS) and she told me to go and see a pharmacist until I could get a doctors appointment the following day. The pharmacist thought it was just a bad reaction to the virus I had had and gave me chamomile lotion and antihistamine for the itching. Over monday night my legs became super stiff and achy, I was describing it to people as if id been hit by a bus, but at this point still no pain. On Tuesday I woke up and the rash had darkened over the bottom of my legs and new spots had appeared, at this point my mum had spoken with people at work and they were telling her that I needed to be checked for HSP as they were certain it wasn't meningitis . Tuesday evening I went to the doctors where I told them to question HSP, so they took a urine dip which was +1 protein and then they arranged for me to come back in the morning for a blood test (however I never made this appointment). Tuesday the pain began, first as a tingle and then almost like super super bad pins and needles, and i was rating the pain 9/10 (i'd consider myself to have a high pain tolerance as well). My legs continued to get super hot and swollen and the rash was spreading up my thighs and onto my bum. I could only take paracetamol for the pain, as ibuprofen was advised against incase of kidney involvement. By 1am on the wednesday morning I couldn't take the pain any longer and so we rang 111, who called for an ambulance. I was taken to A&E where we waited a long time to see the doctors. They were giving me codine and cocodamol for the pain, but it wasn't really effective. They must've taken about 8/9 blood samples and also urine dips. When we saw the doctor she prescribed an ointment and more cocodamol and arranged for an outpatients appointment with dermatology for two weeks, and I was discharged at about 10am. On making it back to my flat, at this point I could barely walk and was essentially non weight bearing, my mum picked me up and took me home, where she'd be able to look after me. The wednesday night she spoke to more of her colleagues and arranged an appointment for the thursday morning to see my GP. On being seen here they referred me straight to the hospital (at home). Whilst waiting to be seen in GPAU they took more blood and more urine, still +1. When I was seen by the doctors, they did a whole bunch of checks and then another doctor from dermatology came into the exam who had seen me waiting in the corridor and wanted to come and have a look for herself. She was pretty certain on HSP also and wanted to get me onto Prednisolone 40mg asap. She also prescribed paraffin cream, and dermovate ointment and a body wash lotion, as well as some gastro tablets to protect my stomach from the steroids. The rash at this point was very dark red purple and was beginning to form blisters. The saturday came and I was beginning to get a common cold, but also I began to have small nose bleeds after blowing my nose (which I have never had before). 

4 weeks later.... have been in and out of hospital and doctors appointments. Have had new creams prescribed, Fusibet (has an antibiotic in, as some of the blisters were becoming infected). Have had skin biopsy and chest X-ray. Biopsy came back showing a resolving vasculitis but it wasn't 100% clear for HSP, however as the doctor explained, its clinically showing symptoms of HSP and the treatment I am on while resolve this anyway and so this is what they'll continue to treat it as. I had urine sent off for a protein count which finally came back as an intraceable amount of protein, so basically its clear. I have been seen by ENT doctors who have explained that I have a small amount of the vasculitis in my nose and have been prescribed a cream for this too. 

I am now able to walk and weight bare around the house, and have been managing shorter distances. However I still find it necessary for the wheelchair for anything too much because my legs become super tired and feel weak, and this also isn't helped by the side effects of the prednisolone. 

Other side effects I've had include, a HUGE appetite, lack of concentration, awful memory, feeling super spaced out, I have a lot of trouble sleeping and weirdly wake up at 8:30 everyday without fail, no matter what time i go to sleep. 

Having seen the doctor 2 days ago, she is very happy that it is beginning to show good progress in healing and I won't see her again now for 2 months. They are now reducing my steroid dose every 2 weeks by 5mg, so will be on them for another 14 weeks yet. She's happy for me to resume uni work and normal day to day activities when I see fit, i.e. when i can spend an entire day on my feet comfortably. She's also happy that i've had no kidney involvement. I will be seen by my GP weekly for urine dip and bloop pressure checks until my follow up appointment at hospital. 

As for now, the rash is slowly getting better. above my knees has faded into blotchy faded marks and I assume that this will slowly fade to nothing. Below my knees however, i still have a mixture of darker colour spots, blisters, new skin healing from the blisters (most likely scarring slightly), scabs and one almost ulcer like lesion that was originally the biggest blister. 

I'm fairly happy with how its been recovering and am optimistic for a full recovery within the next month or two.

The doctors have told me that I shouldn't be concerned with it reoccurring as being on the steroids for so long should stop this. However having read online, I am definitely going to be careful not to dive head first straight back into the boozy student lifestyle. I also plan on returning to university after my easter break which is for two weeks, starting in a week. So hopefully will be fit enough to manage full days by then. And eventually I plan on working exercise back into my life, it's huge part of my time table (studying to be a PE teacher) and its a huge part of my life playing netball for the university. So am optimistic that this won't set anything off.


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  • Posted

    I wonder why they don't put people on prednisone (or prednisolone) much earlier.  The problem is that they should get people on it sooner and trail off the dose more quickly.   I had this multiple times but each time tried to play with the dosing with the initial larger doses and trailing down at least every other day as long as progress was made.  The reason I feel this way is based on the research papers.  It shows a correlation to better outcomes with earlier prednisone usage.   However, all that being said, doctors aren't aware and also try to rule out other possible causes first.  This seem like a very severe initial reaction.   Had you taken any cold medications?  One other possibility I have been pondering is during this condition one also develops a hypersensitivity to allergens.   I wonder if you can remember what affect the antihistamine had when you took it.   

    I caution you since it was such a severe reaction, many people to have recurrences.   Try to get enough rest.  Avoid too much sun, alcohol and allergens.  I hope you get better soon and stay better.

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    • Posted

      I'm hopeful that the prednisolone will sort it out as I was put on it so early and the high dosage and extended prescription for it. In terms of cold medications, nope, took nothing. There was nothing previous to the rash starting out of the ordinary other than the virus. 

      The antihistamine did nothing. I had stronger ones prescribed from the hospital which helped somewhat, but in terms of when it was itchy, I just had to deal with it. Thank you 

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  • Posted

    Wow your rash was waaaay worse than mine! 

    I’m a similar story to yours. 21 years old, 2nd year uni student, flu virus. Started with the rash all over my ankles up to my knees and started on my elbow joints. My joints swelled stiff and were extremely painful. What I didn’t know was the damage being done to my kidneys. 

    I didn’t have the stomach involvement like yourself but I saw my GP due to the rash and nose bleeds. She initial suspected leukaemia and ran urgent bloods and dipped my urine which came back as 4+ blood and 2+ protein. 

    Bloods came back fine, but the rash was stubborn and my kidneys were still churning out blood and protein. 

    So I was referred to the nephrology team at the hospital who diagnosed me straight away with HSP. I got a scan on my kidneys and luckily there’s no long term damage. 

    It’s been 3 years now and I still suffer with nosebleeds occasionally but my kidneys are a lot better, they only get monitored once a year. 

    I also haven’t had it return but my doctor said ‘never say never’ so it’s one of those. 

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    • Posted

      I'm sorry to hear this! I think i was super lucky to get on the steroids as soon as i did because it completely stopped the rash from spreading and we saw a noticeable difference within days. I think this probably also suppressed anything that wanted to happen with my kidneys also. It's good that you won't have any long term damage! 

      It's encouraging to hear that you haven't had a reoccurrence, my doctors at dermatology suggested that it isn't very likely but obviously we'll just cross that bridge when and if we have to get to it. 

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    • Posted

      I got a pretty urgent referral but it was just after the rash was ‘active’so was just starting to fade. 

      I wasn’t put on steroids as it was ‘running it’s course’ and they have lots of nasty side effects, it’d be interesting to see long term the difference in steroids and non steroid treatment for HSP

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  • Posted

    You were very lucky to get a diagnosis so quickly. It took me over two years for someone to diagnose it and by then the kidney damage was already done. Prednisolone didn't do much for me but I wonder if that's because it took so long to get onto it. I've still got active HSP eight years on and it hasn't stopped (although the symptoms have been well controlled for the last three years by dapsone). I hope you continue to improve.

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