I was diagnosed 5-6 weeks ago with HSP, the doctor in A&E prescibed some cocodamol and told me to follow up with my GP in a couple of weeks. My GP prescribed me antibiotics and signed me off to rest up. I've had the arthritic joint pain which I still have a mild form in my hands and I've had the GI bleed and all of these symptoms have backed right off so I started back to work from Monday but by the afternoon the rash was every bit as dark as it had been at the start.
Has anyone had experience of this kind of rash and is there a successful treatment to get it to back off? I have two large patches surrounding my ankles about the size of my open hands and they are a very dark red.
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Iain71
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Have you have your kidney function checked and your urine dipsticked for the presence of blood and protein? Did they do a biopsy to confirm that it is HSP and a full auto immune blood panel ( ANCA, ANA, CRP etc )?
HSP can be tricky in adults, children quite often only get one episode but in adults it tends to recur. It's not something that your GP is qualified to manage, you really need a referral to a Consultant who is experienced in managing Vasculitis.
VUK have a helpline, the phone no. Is 0300 365 0075. You can also e mail me at lynn@vasculitis.org.uk or john.mills@vasculitis.org.uk and we can give you some advice and names of Consultants with experience in managing HSP.
Thanks for your reply, I did get blood and urine tests done in A&E; I went in thinking I had a return bout of sepsis (many years ago) and a week and a half later my GP had a second set of blood tests done during my follow up appt. When I called in sick this morning, one of my colleagues suggested I self refer which i'm more inclined to do now after he's told me there isn't anything more he can do. I'm considering asking to see one of the other GP's at my next appt so as to get a second opinion but if he/she determines that the course of treatment so far is correct, which specialty would I want to ask for, with most of the symptoms appearing to be in remission apart from the rash I had thought maybe a referral to dermatology would help to sort out the rash.
While you still have the rash you should be getting your urine dipsticked on a regular basis to check for blood and protein. These are usually symptomless and are early indications of kidney damage before the U&E blood test is affected ( kidney involvement is one of the most serious symptoms of HSP ).
The most important thing is to find a Consultant with experience in Vasculitis. They are usually Rheumatologists or Nephrologists, the vital question to ask is " how many patients do you have with HSP/ other variants of Vasculitis ". In our experience Dermatologists aren't great at managing systemic diseases.
I get the purpura rash, but it is caused by long term steroids for PMR. Mine sometimes breaks open and bleeds, it makes a real mess of the sheets! There is nothing I know to get rid of it, but it does not really cause any other problems apart from sometimes looking like I have been fighting with a wild animal. It does fade after a fashion eventually I find.
My doc was originally talking about referring me to Haematology if my platelet count was still down on the second blood test but all I got back when I called for my results was that they were "satisfactory".
I had a lot of blisters early on and they all burst all over my sheets and the rash was starting to fade after 5 weeks rest but 5-6 hours into my first day back and it was like getting poked by a thousand tiny needles and between that and the stiffness in my joints and then on Tuesday the needling started a couple of hours earlier, my doctor has told me that my weight problem and the oedema is feeding into the problems with the rash which is certainly plausible but I can't help thinking that if the other symptoms have backed off maybe there is something they can do about this one too.
Iain, I think you need a referral to get some answers. HSP is not usually caused by a low platelet count ( thrombocytopenia ).
There are treatments for HSP, but they are usually Consultant led. If you want definitive answers rather than Dr's guessing then you need a specialist referral.
Hi ya, I have HSP, luckily in remission now. I had my first episode in 2003 and the treatment then was full rest for 6 weeks but throughout my urine was tested for blood and protein, plus also blood tests too. I had my 2nd episode last summer, indicators were the rash and blood and protein in my urine. The rash went ulcerated on my legs but also spread all up my legs, bottom, stomach and insides of my arms. I also haf renal involvement eventually. I was initially treated by a derm who I was under for my psoriasis but she discussed my case with renal due to the kidney involvement. I was then treated by renal when the kidney involvement became more prevalent. There are a number of treatments, I was put on steroids (prednisone), but also treated with Iv steroids (methyl pred) and azathiaprin (immuno suppressant). I was going to be put on cyclophosphamide but luckily didn't need to go on that. It depends on how you react to the flare and the drugs they guve you. I also saw a rheumatologist during treatment which was good to get a second opinion but renal retained the lead. Push to be referred, but if not then present yourself at A&E again; you may have to be forceful to ensure you get good treatment by someone experienced in HSP/vasculitis. It is uncommon; my rheumatologist said she sees one adult patient about every 3-4 years. Good luck
I asked to see a different GP and I asked him to refer me to a specialist, I should get referred to rheumatology at my local hospital where the local expert is based. I'm also back at work full time but I find I can't stay seated for too long without painful consequences and I need to take painkillers to help get through the afternoons, maybe my GP is right in that being super obese is exaggerating the symptoms but my last blood test was in the last week of June and my last urine test was when I presented in A&E. I'm just hoping that they can give me a better idea as to what's going on and maybe do something to help if the condition is still active.
I've been on a calorie controlled diet set out by the adult weight management team since August last yr and getting plenty of exercise, especially now that my employers have agreed to let me take extra time during working hours so I can get away from my desk for a walk.
Between the walking and the compression bandages and losing one and a half stone since I was diagnosed, all these factors are helping me to get back to work and stay in work when my GP questioned if I was fit for work but I still need painkillers to help me through the afternoon and I have to rest up in the evenings for a couple of hours to let the fluid build up drain in the evenings.
It's got to a point where on a good day which is probably at the start of the week it almost feels like nothing changed until I take off the compression bandages and see the deep purple rash around my ankles.
My hope is that as I lose weight and the oedema fades away so will the rash and the effects but if there is anything the doctors can do to help i'd like them to try or at least explain the risks so I can make an informed choice rather than make that choice for me.
I am following these posts as my wife has recently been told she has HSP. VUK advice has been invaluable and we await the results of the biopsy. Anything we learn or any developments we will share. My wifes Purpora rash (11 th day) is over her legs, buttocks, hips and now both arms. She has tummy and joint pains. No treatment yet discussed.
My rash spread up both my legs covered my thighs, buttocks and started spotting on my arms within a week, around the same time I had some GI discomfort and joint pain, sometimes extreme which only eased after my GP started me on antibiotics.
It's been nearly two months since the onset and at the end of July I asked to see a specialist as a self referral after my GP told me more or less that there was nothing more he could do. Maybe in my case he's right but since he disputed the original diagnosis and had to dig out a book from above his computer to look it up, I would have to guess he doesn't see many adult patients with this condition.
I've had two blood tests and one urine test all conducted in June and if I had to guess my condition is in remission but since the blood tests were done nearly two months ago and the only explanation they gave me was that my test results were "satisfactory" I don't really have any answers yet.
I believe a biopsy is one of the key tests in identfiying HSP as I've read that other forms of Vasculitis can also present with the rash. If this is HSP then it is supposed to the mildest form affecting small cells rather than medium or large arteries.
Kidney damage is supposed to be the biggest risk and I believe that HSP patients are supposed to be monitored through blood and urine tests looking for blood or protein. I couldn't really check my urine and the doctors didn't seem interested or forgot about a dip test, I only figured out that I'd also had a GI bleed after my symptoms and constipation began to ease and the first stool after the end of the constipation was almost jet black, thankfully that was the only one, if it had been bright red or I'd had another black stool, coupled with my other symptoms I would have gone back to A&E.
I was advised in A&E not to take Ibuprofen and they prescribed me the strongest form of cocodamol instead. At my follow up appointment, my GP asked me if I'd been taking aspirin, I know aspirin is supposed to thin blood and I believe ibuprofen is supposed to have a similar effect, if your wife needs pain relief it would be worth talking to your GP.
I think in the current state of the NHS it's important to be armed with as much information as you can when you see your GP so you can be sure you get the right treatment and since HSP is supposed to be rare in adults, it's likely your GP wont see many cases and in adults once in the clear, the condition may come back so even though my symptoms may be on the decline, I still want my condition managed by someone who has seen patients with Vasculitis before rather than leave it up to my GP.
Finally got to see the Rheumatologist, he rushed through the ANCA test which thankfully came back negative and with the clear chest x-ray I'm guessing I'm in the clear unless this can come back at some indeterminate time in the future. Now I've to see my GP about a case of cellulitis that's giving me some problems.
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