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Henoch-Schönlein purpura (IgA vasculitis) treatments that work

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natalie77410
natalie77410

Hi everyone,

Like most of you, my diagnosis of HSP was complicated and drawn out but I have had symptoms for over two years now - rash, joint pain, stomach pain with loose or bloody stools, etc. I have been on prednisone and imuran (azathioprine) for over a year with no improvement. I am actually worse, now I am showing protein in my urine. I created this discussion for treatment options that work. Prednisone has helped me with abdominal symptoms but not for the rash. I don’t think azathioprine did much but my rheumatologist insisted increasing dosage. My GP has found a new drug called Rituximab, which has been approved in Australia for rheumatoid arthritis and non-Hodgkins lymphoma. It works by depleting B cells in the body. A study was recently released with 22 HSP patients treated with Rituximab with good results, I will try and find it to link it here. 

Has anyone tried Rituximab? It isn’t approved here so will be very expensive to try. 

I have heard dapsone has been effective for some people but my doctors don’t think it will help- is this something I should try?

The other thing I have read about is a tonsillectomy- again my doctors aren’t convinced it will help unless I had strep. For those that it has helped, did you have a strep infection?

I have also looked into a plasma dialysis but my doctors think it would be too risky. 

Now that I have kidney involvement I think they are more likely to try riskier treatments. I would love to hear from anyone who has actually cured their HSP because it doesn’t seem likely from what I’ve read but none of the doctors seem to know this!!

0 likes, 9 replies

9 Replies

  • Lindsay831
    Lindsay831 natalie77410

    Posted

    Hi! No one hardly ever posts anything about hsp! So hard to find any info on it. My son is suffering greatly with this, having significant kidney involvement only two weeks post rash. His disease reared its ugly head five weeks post open heart surgery. Yes! He has congenital heart disease and hsp. Try finding any info on that and u might as well be trying to colonize the moon. He's been doing chemo for six months. Just scheduled his next kidney biopsy for later this month so we will see what that shows. His first biopsy only two weeks in showed a loss of 40% kidney function. 

    • Steph1609
      Steph1609 Lindsay831

      Posted

      Hi Lindsay I have heart problems and HSP. I am in 53. There has been very little help/info available in the 20 years I have had it. Seems the info that is out there is not always correct as most info leads you to believe that this illness self limits . I am sure maybe in some cases it does. Mine has sadly just got worse over time. I really hope that won't be the case for your son x

    • natalie77410
      natalie77410 Lindsay831

      Posted

      Hi Linsday,

      I'm sorry to hear about your son. From what I've read I think children have a better prognosis than adult diagnosis if that helps

  • Steph1609
    Steph1609 natalie77410

    Posted

    Hi Natalie I take dapsone prednisolone and methotrexate. I have had it 20 years now. Dapsone is good but I haven't in 20 years found any combination that controls it for Long. Rituximab actually made me really ill. But it may work well for you. I hope you find something that works for you. It's a horrible illness to have x

    • natalie77410
      natalie77410 Steph1609

      Posted

      Hi Steph,

      Thanks for your reply. What happened to you on Rituximab? Now that my kidneys are involved my doctor wants to control it but so far azathioprine and prednisolone haven't helped so not sure what more immunosuppression will do.

  • Steph1609
    Steph1609 natalie77410

    Posted

    Hi Natalie. Sadly the rituximab caused more kidney problems for me but don't mean that will happen to you. The trouble is as it's an infusion once I was given it i couldn't do anything to reverse it. I am recovered now but it was a long road. But I have heard others do amazingly well on it . There is also a treatment called

    cyclophosphomide which I had a few times and that worked well for me too. But over the years I think my body got used to the treatments and they didn't work so well then. Rituximab works for more people than it it fails. My body is quite week from all the years of flare ups I have peripheral nerve damage all over and struggle to get about. If I had the rituximab treatment years ago then maybe it would have been different. I would definitely try it if nothing else is working and before you get too battered by the vasculitis.. nearly everyone I have heard of has had amazing results . Please let me know how you are doing with it x

  • peter838731
    peter838731 natalie77410

    Posted

    Any updates on your condition? I have tried Rituximab with no luck but found an AIP diet has greatly minimized my symptoms. I generally have been drug free as long as I follow the diet strictly. Worth a try along with or without other treatment.
    • veena2918
      veena2918 peter838731

      Posted

      Can you please provide details on the diet. I have been diagnosed with hsp

    • peter838731
      peter838731 veena2918

      Posted

      Search Autoimmune Protocol Paleo diet. Avoid dairy, eggs, etc.

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