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I have had Hsp since the last 9 months, and there seems to be no end of it.

Posted , 10 users are following.

shreesa21736
shreesa21736

I have had Hsp since the last 9 months.The first 3 months were quite painful. I had severe abdominal pain, joint pain. I was giving my AS board examinations then. I had to take steroids to relieve myself from the pain. I was hospitalized due to my gastrointestinal involvement. I was recommented to take 60 mg prednisolone for a a month and to eventually taper off the doses taking about a year to completely stop my medication, however due to high side effects i had to stop after 5 months. 

Since then i have consulted different nephrologist, rheumatologists and have been doing different bloody tests. My hands look bloody due to the injections. There seems to be no end of this. It hurts even now. Whenever i get new rashes, my body feels numb and heavy. I have quite lost the interest to do anything at all.

0 likes, 47 replies

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  • rocky31676
    rocky31676 shreesa21736

    Posted

    Did you stop prednisone without tapering it off ? 
    • shreesa21736
      shreesa21736 rocky31676

      Posted

      Does your leg hurt still after walking for some time? Does your rashes too flare up after normal exercise?
    • rocky31676
      rocky31676 shreesa21736

      Posted

      yes, legs hurt after walking for more than 20 minutes. and Rashes flare up after exercise because the blood vessels inflame. 
    • rocky31676
      rocky31676

      Posted

      Are you still taking prednisone?
    • shreesa21736
      shreesa21736 rocky31676

      Posted

      yeah....

      have you ever thought about pushing yourself? what if you overwork yourself. will the rashes go away then, just cause its tired 😂

    • shreesa21736
      shreesa21736 rocky31676

      Posted

      No, its still the same. I cant walk much and I cant eat just anything. I get abdominal pain most of the times and in the days I walk a bit my muscles hurt bad.
    • rocky31676
      rocky31676 shreesa21736

      Posted

      I too have abdominal pain and rashes on lower body. It hurts when the flares happen (about twice a month now). I have been told I have IBS and require dietary changes, (low FODMAP diet) and an antibiotic rifaximin. The doctors here do not have knowledge about HSP and that HSP is causing all this.
  • AndyMcUSA
    AndyMcUSA shreesa21736

    Posted

    I got HSP in October last year and ended up on Prednisone and Cyclophosphamide until the end of April when I tapered off the Prednisone and stopped the cytoxan. Withdrawal is hard but worthwhile in the long run as you know.

    It sounds to me like you still have the disease. Whenever I went out or exercise I would have flare ups that got worse and worse until I was hospitalized.

    Unfortunately I had kidney involvement and lost some kidney function, so I hope that your docs are on top of making sure that is not happening.

    1 to 2 Das after each flare up I got joint and skin pain along with depression and malaise. It's a tough disease to go through.

    How have you been doing recently?

    • shreesa21736
      shreesa21736 AndyMcUSA

      Posted

      I too get flare ups worse when I exercise a bit, but sometimes they appear even when I have been on bed for days. Well I have had so many tests in the past 1 year, but the cause of these flare ups are yet unknown. I cant get out of my house much
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