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HSP - alternative therapies? and how long to it leaves permanently?

Posted , 36 users are following.

mary55774
mary55774

Hi all. I came online for answers re HSP, but this seems as close as you get to anything! My 13 year old son came home from school in December 2012 with a rash that looked like the meningitis rash on his legs. I took him straight to A&E where they treated him for meningitis as soon as they saw him. A few hours later a doctor came around and said that she believed it wasnt meningitis (thank God), but that it was HSP. (She had had it herself as a child and recognised his symptoms as soon as she looked at him, which led to fantastic care as she knew what to look for). She kept him in hospital for 3 days and the rash died down, and the pain in his knees also subsided. He was sent home with a box of urine sticks which he had to use everytime he went to the loo, with a message to bring him back if his protein was high. It was invariably +++ protein every time. He was in and out of hospital regularly getting bloods checked etc, poor fella said he felt like a pin cushion. Short note version, they were keeping an eye on his creatinine level which should have been below 50, his rose to 220 and then they eventually carried out a kidney biopsy to make sure there was no permanent damage.

The rash still comes back regularly, and always seems to come on if he's feeling at all unwell. Today, for example he has a sore chest, and the rash is back again. It seems his immune system is the problem here. The first time he caught this he was just starting an antibiotic for a throat infection. The second time the rash came back he had a sore throat again. I came online to see if there are any alternative therapies I can try, he's sooo fed up with all this, and in the middle of GCSEs and could do without all this. We're up with the Head of Renal in the Children's Hospital next week again so I'll ask her when I see her. He's never been prescribed a single thing for this since taking it, so if anyone has any suggestions, I'd love to hear them. The doctors are obviously concerned with keeping his kidneys healthy, and rightfully so, but I'd like to try and tackle it from this side to stop it happening. Also, if you or your child has got out the other side of this, I'd love to know. Something positive would be great. Thanks, Mary

1 like, 63 replies

63 Replies

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  • natalie77410
    natalie77410 mary55774

    Posted

    Hi everyone,

    I am a 22 year old female in Australia and have had symptoms for 18 months now. I get the rash and abdominal pain quite severely, with joint pain and swelling too. I have never had renal involvement so been pretty lucky with that. I have been on and off steriods for the past year and currently on a high dose and I have also been put on Imuran. So far it has been helping but I am still weaning off the steriods so hard to tell what's working. The side-effects from the steriods are awful and I can't wait to be done with them but I have to wean REALLY slowly becauase as soon as I reduce my dose by even 1mg my rash and abdo pain is worse. My mum wants me to cut out gluten, dairy and sugar but I just want my life back to normal. I would be interested to hear how acupuncture goes. 

    Thanks everyone for sharing, it's nice to have this forum because it seems like nobody really understands what we are going through.

  • james32319
    james32319 mary55774

    Posted

    Hi my 4year old daughter has just been diagnosed with this in the last few days. Any help would be really appreciated 
    • kacy89887
      kacy89887 james32319

      Posted

      So sorry to hear this first of all? Maybe tell me some of your concerns with this. My daughter is on week 7 and we are seeing some light. We have been through the pain, swelling, abdominal isssues, horrid rash, and kidney involvement. My best advice to you is to seek a rheumatologist and a nephrologist.  Demand it.... but I will answer anything that I can. I know where your coming from and your concerns. 
  • brittany08747
    brittany08747 mary55774

    Posted

    Have you had his thyroid checked? My daughter suffered from HSP and we went to Prompt Care for an ear infection and that doctor just happened to feel her thyroid and suggested we get it checked.  So we did immediately and her tsh levels were extremely high. We now have it under control, but I wonder if that wasn't what allowed her HSP to present itself. Maybe if we would've known about her thyroid problem sooner her immune system would've been stronger. Best of luck to you and I hope your little guy gets some relief!

  • lisa64513
    lisa64513 mary55774

    Posted

    I’ve been diagnosed wiv HSP today. 

    I’m 36 & live in the Uk

    Luckily I have no kidney problem, abdominal pain, vomiting or protein in urine but covered from head to toe in the itchy rash & bad joint pain to the point I can hardly walk.

    The only think I have found to work is having a cool bath. I’ve had 3 today! It Eases it for a couple of hours then it’s back throbbing n itching.  I’ve bin put on 40mg of steroids for the next 5 days. Anybody any ideas on wat I can put on to stop the itching n throbbing 

    X

    • arnie66
      arnie66 lisa64513

      Posted

      Hi Lisa,

                  My daughter had HSP last year. Things that helped her at that time was eating a bland diet (salads & fruits) and taking benadryl (sometimes it helped reduce the rashes). In addition, we found that Accupuncture  helped ease her joint pain significantly (she was scared of the needles initially but became a believer in accupuncture after the first session). My daughter also kept off all diary and gluten food for some time though I'm not sure whether it helped. She also felt that Kefir helped (though she only used it in small amounts as it's diary based).  She also took pain killers for the joint pain (She took Tylenol  as the doctors advise you to stay off NSAIDs if there is a kidney infection). If you don't have kidney infection or abdominal pain, hopefully it should go away soon. Hope you feel better soon (Btw we are in the US and hence I'm not sure if Tylenol & Benadryl have different brand names in UK)

    • sky008
      sky008 lisa64513

      Posted

      The steroid should take care of the itching and throbbing if you have already started that. Aloe Vera can also help to cool the area and possibly help with the itching, but it won't actually treat the issue. 

  • Hanach
    Hanach mary55774

    Posted

    Hello

    How is your son now?

    My son in very similar situation.He is 12 now. Was diagnosed 7month ago. Still protein ++ or +++ ..

    Last  app  with neph - done full blood test, just in case if they will decide to carry kidney biopsy .. 

  • sevda1
    sevda1 mary55774

    Posted

    Hi everyone, when I was 11 years old I diagnosed with hsp and stayed at hospital for 2 weeks, It happened after of usage pills for flue. it recovered with diet and rest. I had that time joint pain rush. 

    After a long time when I am 36 I had second attact and it effected my kidney. I used steroid for 3 months with low dose, The blooed in the urine reduced but didnt finish. 

    And when I am 41 after a flue it attact again after usage of pill and my kidney getiing worse. 

    The piils majezik pain killer,and a kind antibiotic. 

    Now the doctor gave me pills named capril to reduce blood pressure although I have low blood presure.

    It reduced a bit, but the doctor said it has adverse effect to kidney as well. 

    Also The doctor says no salt, eat fish, drink water. 

    If you have any info especially about kidney bleed please you let me know I will be pleased.

    • harleycw
      harleycw sevda1

      Posted

      Perhaps take something like Milk Thistle (google it) and certainly should take fish oils.  Many people on this forum have spoken about it helping them some.  It is very strange they ask you to take medicine to lower your blood pressure when you have low blood pressure.   What antibiotic did you take and why did they put you on that?  Did it help?
    • sevda1
      sevda1

      Posted

      as I know kidney is combined norrow vessels. kidney doctors use these kind of pills (for hypertansion) to reduce pressure in blood and make the kidney healthy. it reduced my microprotein and micealb. from 500 to 390 sth but the doctor says these tablets named capril can damage your kidney as well. as i read description it says the same thing in long term as well. probably when the doctor see it effects me badly he will stop medicine, every 2 week i give 24 hours urine. i am afraid, suspect, but hope may be it helps. i read alot about it and i couldnt see any certain theraphy for it.
    • sevda1
      sevda1

      Posted

      by the way have u every hear about orginal progestron usage for hsp kidney disease. progestron can cause alergie and cause hsp. but if the hsp not allergic and if hsp occurse aganist cold infection, would it help.
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