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HSP Possible Diagnosis

Posted , 7 users are following.

patch64
patch64

Hello everyone. My name is Patrick - 50 year old male. I will start by saying I have not been official diagnosed with HSP although from everything I have read, which is not that much as there doesn’t seem to be a lot of information out there, I am almost sure it is what I have.

Towards the end of last year I had a bout of diarrhoea/loose stools that lasted for over 4 weeks and so I visited the doctor. He referred me for bowel cancer screen and so I had a sigmoidoscopy and a Barium Enema X-ray. All came back as ok. The specialist that did the X-ray did put in his notes ‘possible colitis’.

Around New Year I got a bad cough and cold and developed a very sore throat infection that lasted about a week. The day after the sore throat passed I noticed these small red spots on my right ankle. Within days they has spread up both legs. They were non-itchy and turned purplish before they started to fade. I had severe pain in both my knees as well.

I visited my GP who suggest 2 possibilities. Guttate Psoriasis or a purpura (I don’t recall the full name for the 2nd but I don’t think it was HSP). Anyway he gave me some anti-biotics to clear up my persistent cough and some steroid cream (Dovobet) for the rash and told me to return in a week. When I went back the rash had all but faded and he was happy that was it. The day after they returned but not as widespread as before.

I then had quite a social weekend that involved a lot of alcohol. I woke up on a Sunday morning to find the rash had returned worse than ever. This time covering both legs, buttocks, waist and arms. I returned to the doctors but saw a different GP than my usual. He was reading my notes as I entered and before I sat down he said so you’ve had some Guttate psoriasis. I said that I don’t think it was that and mentioned HSP. He almost guffawed saying it was unlikely as in 30 years of practice he had only come across it twice and those were in children. Anyway he did examine me and stated they did not look like Psoriasis and were more vascular in appearance. He took bloods and I provided a urine sample. I await the results of those.

Over the last few days I have had some abdominal pain which seems to emanate above both hips towards the front. It’s not constant but seems to spasm when I get up or bend over. The joint pain seems to have eased somewhat.

I’ve no doubt the chest/throat infection was the trigger and that coming right on top of the digestive/bowel problems meant my immune system was suppressed and weakened.

I just wanted to ask if it was normal for the rash to come in waves. Appearing, fading and then resurfacing? What questions should I be asking the doctor the next time I visit? I guess it depends on the blood/urine results.

Sorry to waffle on but this condition is very worrying. With all the worrying and relief over the cancer screening it seems a cruel twist of fate to be dealing with this so soon after.

1 like, 12 replies

12 Replies

  • patch64
    patch64

    Posted

    I meat to add (not sure if relevant) that I have noticed a slight tingling sensation on my face, just above my jawline on right side. Only lasts a second or two before going. This has been happening for a week or so a couple of times an hour.
  • janechloe
    janechloe patch64

    Posted

    Hi Patrick... From what your describing it does sound all very familiar with hsp. Have your joints been swollen.? And yes it tends to follow a throat /chest infection....Are you in the UK. My daughter has had episodes of hsp since 15, she is now 19 and currently suffering a chronic bout of symptoms following tonsillitis in December.. I have had to direct most drs as they are not often confronted with the condition. So it can be very frustrating at times.. Typically symptoms are missed diagnosed until the purpura rash and swelling appears, this is what makes drs jump and then investigate further. Other symptoms are blood and protien in urine, you can check this yourself or gp can by a simple dip stick check, high blood pressure, bloody stool samples..

    If you are in the UK there is an immunologist at addenbrooke's hospital. Dr David jayne....

    I hope this helps. Please get back to me if you're needing any guidance or support.

    • janechloe
      janechloe

      Posted

      Sorry,,,, yes the rash can come and go. It lulls you into thinking it's over and your body is returning to normal then appears within hrs.

      Tingling in the face I'm not familiar with.

    • patch64
      patch64 janechloe

      Posted

      Hi thanks for the response. Yes I am in the UK, Manchester. My joints, especially knees, have been swollen but are ok at the moment. Most of the rash had gone until I woke up this morning and it had returned. The again it's been only 4 weeks since the first appearance and from what I have read on here can last much longer than the 4-6 weeks most of the medical sites suggest. Guess I will know more when the blood/urine results are back.

      Are the home urine kits fairly accurate in your opinion?

      hope your daughter feels better soon.

    • janechloe
      janechloe patch64

      Posted

      Hi.. Yes I'd say that they are, dip sticks give a scale reading but some gp's also have a more technical machine that is gives precise levels.. You could always pop and ask to get your gp's nurse to check it for you. I would say you could monitor it yourself but collect a first morning sample. I am also going to say that my daughters reads different from day to day... Some days it's negative other day positive. I would definitely push for further investigation into confirming hsp, as if they are overlooking the condition you may not be getting the correct follow up checks. If joints are extremely swollen, in my daughters case steroids short term have really helped her manage the symptoms symptoms.

      Gp's should check the following initially.

      Urine.

      Blood pressure. (maybe high)

      Tenderness around the Stomach area.

      ( abdominal check as in pop you on couch and check your stomach)

      Stool sample.

      Blood work should be checked.

      Kidney function/Creatine

      Full blood count.

      Esr level.

      Crp level.

      Then maybe

      Possible further bloods regarding immunology test....

    • wendy92629
      wendy92629 patch64

      Posted

      If your in Manchester there is a doctor at Manchester Royal called Dr Michael Venning. He is taking on cases of hsp and has a special interest although due to retire. Nearby Liverpool also, take on cases and have just started during recent years collecting evidence and having meetings with Vasculitis patients and groups. In the north we are hoping to eventually have a specialist rheumatologist to cover the north as in the past support has been minimal. I live in north wales not far away if ever you fancy getting involved with support networks. Wish you well

       

  • barber883
    barber883 patch64

    Posted

    yup sounds like you joined our club.  I am 48 year old male took plenty of doctors to figure me out. The one that did was a pediatric one and yup HSP  It does come in waves and also alcohol does make a diffrence.  I have have been on steroids for about a year now and helps wih spots and joint pain.  The stomach pain at the start would put me down to the point I couldnt get out of bed. when I was hospitalized it was after a beerfest and woke up next morn went to bathroom and my stool was nothing but blood.    Hope I was some help
    • wendy92629
      wendy92629 barber883

      Posted

      Hello, I noticed your another older candidate for hsp. Can I ask are you from the UK? I'm always interested which areas parts of the country have cases. I'm hoping to collect further information for support for people. Your right in what you say that acohol does not do any good for people with hsp however,lots of problems related to kidneys will make you ill and if you drink quiet alot that might of had something to do with it. Have you stopped drinking now?

       

  • patch64
    patch64

    Posted

    I called the doctors today to see if anything came back from the blood/urine tests. Urine was fine but I needed to make a routine appointment with the doctor regarding the blood tests. Not sure what that means. As I was only talking to a receptionist she couldnt give me any details. I know on my last blood test (before the appearance of the rash) my iron levels were sky high so could be that again. We will see.

    Thanks for everyones comments. So helpful when information seems so scarce.

    • harleycw
      harleycw patch64

      Posted

      I was over 40 when getting this although I can now remember a case where I probably had similar minor events when much younger.   I read a study in which low testosterone had an association with allowing one to be susceptible to HSP.  In my case, if I take Prednisone, the symptoms immediately show improvement, so if that works for you it would be a good indicator it may be HSP.

      I gave up coffee and chocolate, had less reoccurances ( I don't drink much) and when I redid coffee and chocolate, had reoccurances.  Tried each separately and seems like chocolate has a correlation but no necessarily coffee/caffeine.   

      I think it's just a good idea to keep doing as much research on your own as possible and also avoid general doctors and see allergy and immunulogy specialists as the one I eventually took myself to (no thanks to my completely ignorant and awful primary care doctor) did know right away, HSP was likely what I had.   

      Good luck to you !

  • wendy92629
    wendy92629 patch64

    Posted

    Hello, I am sorry to here of your health difficulties. It is difficult to say if or not its HSP. However, your doctor is right in saying it normally starts in early age. However, there has been a number of recorded cases in older people. Another factor to consider is there are at least 18 rare vasculitis diseases. Many conditions will also affect the skin. I think your doing the right think by waiting for the results to come back and if not happy persist on further tests. There is no definate cure for hsp anyway so I'd say rest your legs try not to worry and relax. And alcohol doesn't do it any good. If you have any kidney problems achohol will make it worse because it makes your kidneys filter not as well. Hope this helps
  • linda82350
    linda82350 patch64

    Posted

    It sure sounds like HSP, I was just diagnosied with HSP, your symptoms sound so similar to mine. I have had the rash, or petechia for the past 6 weeks, some days very mild and then for no reason boom all over.  I've been taking pictures of the rash and keeping notes for my Doctor.  I've been sick, with such odd symptoms and had my first round of blood and urine test I'm mid October, then again in early January, then again 2/19, and 2/29/2016. Surprised by my numbers. So now I'm on a 21 day step down prescription of prednisone, prior to this one I did a 7 day doze of it, that showed some minor improvements from the 2/19 to the 2/29 blood /urine tests.  Very slight. I'm on a NSAIDs and pain meds. If your doctor doesn't become more aggressive, you have to be careful of Rena failure. In kids this  disorder isn't as serious, but in adults it can be very disabling.  You can have flare ups for months! I've suffered with stomach issues, severe arthritis , swollen in of all major joints, exhustion, 
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