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Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?

Posted by junetooth @junetooth, Sep 6, 2022

Interested in connecting with adults with this diagnosis. Specifically, those with kidney involvement, skin lesions and/or gi folding interseption (sp). Thank you.

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kak1601 | @kak1601 | Aug 22, 2023

I was diagnosed in May with IGA Vasculitis. Female, 68 yo. Presented with red dots all over legs, moved up to torso and arms. Tests showed blood and protein in urine. Had skin and kidney biopsy. Showed IGA vasculitis and IGA Nephropathy NOT related. Which was a good thing and they were surprised by the biopsy bc they felt the Vasculitis caused the kidney issue. Nephrologist put me on Losartin 25 mg to control kidney issue. Protein went from 970 down to 280 in short period of time. She said it will continue to go down as Losartin takes effect.
My Rheumatologist had me on 20 mg Prednisone for Vasculitis. As I was weaning off of it, spots came back. Upped me to 60mg. Weaning off, had 3 days left of pills, spots came back. While weaning off I was put on 50mg Aziothiaprine. Was upped to 10 mg Prednisone and trying to wean off again. I have been reading Naltrexone has been used for vasculitis and been able to get it in remission. My Rheumatologist won’t prescribe it. I’m looking for a second opinion on its use.
I’m hoping everyone with this condition gets a kidney biopsy. The course of treatment for me would have been different if they were related.
REPLY
1 reply
queenie2030 | @queenie2030 | Aug 23, 2023
In reply to @kak1601 "I was diagnosed in May with IGA Vasculitis. Female, 68 yo. Presented with red dots all..." + (show)
@kak1601

I was diagnosed in May with IGA Vasculitis. Female, 68 yo. Presented with red dots all over legs, moved up to torso and arms. Tests showed blood and protein in urine. Had skin and kidney biopsy. Showed IGA vasculitis and IGA Nephropathy NOT related. Which was a good thing and they were surprised by the biopsy bc they felt the Vasculitis caused the kidney issue. Nephrologist put me on Losartin 25 mg to control kidney issue. Protein went from 970 down to 280 in short period of time. She said it will continue to go down as Losartin takes effect.
My Rheumatologist had me on 20 mg Prednisone for Vasculitis. As I was weaning off of it, spots came back. Upped me to 60mg. Weaning off, had 3 days left of pills, spots came back. While weaning off I was put on 50mg Aziothiaprine. Was upped to 10 mg Prednisone and trying to wean off again. I have been reading Naltrexone has been used for vasculitis and been able to get it in remission. My Rheumatologist won’t prescribe it. I’m looking for a second opinion on its use.
I’m hoping everyone with this condition gets a kidney biopsy. The course of treatment for me would have been different if they were related.

Jump to this post

I too developed these red spots after 2 and 1/2 years on prednisone for PMR. A vascular surgeon just told me all my skin color changes were from prednisone. My nephrologist has not mentioned kidney involvement. My best wishes to you.

REPLY
1 reply
kak1601 | @kak1601 | Aug 23, 2023
In reply to @queenie2030 "I too developed these red spots after 2 and 1/2 years on prednisone for PMR. A..." + (show)
@queenie2030

I too developed these red spots after 2 and 1/2 years on prednisone for PMR. A vascular surgeon just told me all my skin color changes were from prednisone. My nephrologist has not mentioned kidney involvement. My best wishes to you.

Jump to this post

My spots were before I started on prednisone. Had biopsy & confirmed IGA Vasculitis

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