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I do have Relapsing Polychondritis. I was just diagnosed with it in Nov 2025. Of course, I’ve had issues for years, they just didn’t have a name. I also have been diagnosed with Hypocomplementic Urticarial Vasculitis Syndrome, back in 2024, and without that diagnosis I probably still would not know about the RP.
I understand the feeling of isolation, and the struggle to find more information about it. I just feel like everything I find is just the basics, and I need to know more in depth.
I am currently treated with Remicade(infliximab) infusions (started in May), and oral colchicine and low dose prednisone, as well as low dose naltrexone.
I’ll be happy to share any info I learn with you, and hopefully learn from your knowledge and experience as well.
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@aspyres
I get weird rashes on my hands,my skin peals off and it looks like I have burns around my fingers,doctors are still working on that one,have a steroid ointment to use but the rash always comes back.
Right now I have hydroxychloroquine,prednisone,naproxen(been taking it for over a year now).
They started me on the prednisone over a year ago when they started thinking I might have RP,can't stand it though put on a bunch of weight and made me dehydrated all the time.