Henoch-Schonlein Purpura, what should I do?

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I'm 16, 17 soon (female) and was diagnosed in February this year with HSP (Henoch-Schonlein Purpura). My doctor told me that it's abnormal because its most common in boys and children. She told me if the rash comes back more than two or three times to go back as it could be a sign of something wrong with my kidneys. Since February the rash has come back atleast 8 times. I don't know whether to go back since I don't have it right now and feel as if I'm wasting doctor's time, however have noticed I've been needing to pee almost every 45 minutes since I first had it. What should I do?

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7 Replies

  • Posted

    I have had this for 20 years and the rash has come and gone many times. Mine started at 30 I am 53 now
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  • Posted

    Hi Kayleigh my daughter has had this since jan and was only diagnosed in July . She was having weekly urine dipped and blood pressure to check and the went to monthly etc , so far her kidneys have been fine, thank goddess. Since joining this forum it does seem to can be common in adults , my daughter is only 10 and has been left with scars to her feet , I am now using bio oil on them . X 
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  • Posted

    Hi,

    you should definitely get your kidneys checked!

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  • Posted

    Hi Kayleigh,

    If 'my doctor' means your GP then you need to get a referral to a specialist straight away. That is not necessarily because of something serious so don't start panicking but this condition is not something to be treated in the first instance by your local GP. My advice would be to go to a GP that will refer you into a teaching hospital and ask for a rheumatology specialist. If your practice won't refer (ours were very good with our daughter who is 16 also ) then personally I would just pop into A&E and talk with them. 

    You may already have the referral of course.

    Bye and take care,

    Lizzie

     

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  • Posted

    Go back right away!!!! My son is in kidney failure from the disease!!! Just cuz the rash is not present does not mean you do not have active hsp!!! Go today!!!!!
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  • Posted

    Hi kayleigh

    you do need to go back  to see the doctor as this can affect your kidneys, your doctor should do a dip test of your urine.

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  • Posted

    Please go see your doctor. HSP can cause you to spill protein into your urine from your bloodstream, and it's very important that you have that monitored. 

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