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Has anyone found Dapsone useful to clear up rash?

Posted , 4 users are following.

helen68675
helen68675

My son has now had HSP for a year, he's 16 and in his last year of high school so GCSE pressure looms. He still has blood & protein in his urine and a kidney biopsy has shown good results & they have no damage. The rash is still bad together with swollen & painful legs.

I have read a drug called Dapsone prescribed by a dermatologist clears up the rash and swelling in the legs. Has anyone any experience with this? He is being referred to a dermatologist & rheumatologist.

0 likes, 6 replies

6 Replies

  • ciara94952
    ciara94952 helen68675

    Posted

    I was diagnosed in December 2014 and am now 21 and still suffering with the rash mainly. My kidneys were involved and my stomach quite badly at the start. The main issue now is the rash which I get regularly and have rarely gone more than a week without the rash. Ive tried mycophenolate, steroids, dapsone and colchicine.

    I am currently on no medication as nothing has worked for me.

    I found that dapsone made an incredible difference for the first 2 weeks but then unfortunately I developed dress syndrome as it would seem I'm allergic to dapsone.

    I have read that a lot of people have had great success with dapsone so it's worth trying. I was just unlucky in the fact I'm allergic.

    I was also on colchicine but I lost half my hair from this and became really anaemic so came off that as well.

    Do you know what triggered the hsp/have you had periods of remission at all

    • helen68675
      helen68675 ciara94952

      Posted

      Oh goodness you've had it 2 years, it's an awful illness for people to cope with. You mention it's the rash you have, do you still get any joint swelling & pain.

      I think it was an insect bite that looked quite angry & swollen. He's unable to walk today due to leg pain. A few months ago he was doing really well, walking to & from school & not missing any lessons even taking part in PE. But after catching a cold it's like he's gone back 6 months.

      It's a shame Dapsone or something else hasn't helped you, I hope something comes up for you to try & works. Yes it's definitely worth a try & a prayer for a miracle.

      Thank you for spending time to reply & I wish you all the best.

  • linda29209
    linda29209 helen68675

    Posted

    Hi, Dapsone does work for some people however when my daughter tried it (she was 19 at the time) it cleared up her rash and swelling almost immediately but within 2 weeks she had developed a rare side affect called 'Dapsone syndrome' and ended up back in hospital for a few weeks (it was almost worse than the HSP). However she was unlucky and it might work fine for your boy. Best of luck. 

    • linda29209
      linda29209

      Posted

      I've just seen the earlier reply from my daughter - so there is not two of us out there who reacted to Dapsone!

    • helen68675
      helen68675 linda29209

      Posted

      Thank you hopefully there's only your daughter who had this kind of reaction. I'm am desperate to find something which will help my son.

      Thank you for your reply.

  • lucynewas
    lucynewas helen68675

    Posted

    We've used over the counter anti histamine with good effect for the rash. In not keen on steroids.

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