Relapsing Polychondritis

Chip, here is an old thread https://connect.mayoclinic.org/discussion/relapsing-polychondritis-3/ Some people will still be active and you can respond to their posts with questions. It is really hard when you have a rare autoimmune disorder. Kind wishes.

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.

@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.

@chip13 I understand about the prednisone, it is definitely a struggle with weight and the dehydration too.
I did try hydroxychloroquine early on, but it caused me to have rashes.
Ibuprofen also triggers my vasculitis rashes, so I can only use Tylenol for my pain, so that is why I asked to try the Low Dose Naltrexone. It has helped a good amount.
Now if I can just taper off the steroids, but every time I get down to 5mg I start having problems again.
Praying they figure out the rashes on your hands/fingers. I am sure those are terribly uncomfortable.

@aspyres
I quit taking everything a couple of weeks ago,nothing was really effective accept the side effects.Dealt with pain for about a decade now so kind of used to it,now I just go about looking like I have cauliflower ear and bandaid on my fingers.

I was diagnosed in 2015 I was 35 the onset for me was my ear it for me felt like overnight I had to ask my neighbor to take me to urgent care he said you need to go to the hospital but can I take a picture first he had never seen it I don’t remember getting to the hospital or the next few days my kidneys had almost completely shut down working less than 5% I spent 19 days in the hospital felt like a medical freak a little all the med students were in there I let them all take pictures it’s rare might as well teach I followed up with the rheumatologist is the flint area he had only seen it once and not as severe was then referred down to the University of Michigan rheumatologist they have been helping since. It’s difficult make sure to put it in your medical information on you mines in my apple phone you may not be able or aware if you are having a large flare up you might not be lucid enough to tell them. I wasn’t