Henoch Schonlein Purpura IGA Vasculitis Adult - Others out there?

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.

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.

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

Hello,

I was diagnosed with IGA vasculitis in March of 2025. It was a process in finally getting the diagnosis at Mayo Clinic in Rochester. I was placed on Azathioprine which after about a month elevated my liver enzymes to 10 times the normal levels. I was taken off Azathioprine but remained on Prednisone starting at 40 mg per day and reducing every fourteen days ( approximately three months of prednisone). I was recently prescribed Cellcept and being labs to monitor tolerance.
I had skin break outs continually for 6 months but those have subsided. There is kidney involvement but not severe at this time and no GI issues other than from the Prednisone.
What I find to be the most difficult is the constant feeling of exhaustion. Does this or has this gotten better for anyone else? I do exercise and push through the days but some days are pretty difficult.
I have been told time and time again the IGA Vasculitis is rare in adults. I also have Hashimoto's so sometimes I am not sure what to attribute the fatigue to.
Appreciate any thoughts or experiences.