Hello, I also have RP, Polyarteris Nodosa combined with large and small vessel vasculitis, CRPS and various heart problems including POTS, AFIB and orthostatic hypotension with low pulse pressure, the vasculitis is also causing issues with my motor and peripheral nerves in my legs and left arm, just to name a few things 😀

My main issue with the RP is right now it seems to constantly attack the exterior cartilage of my ears.

When I have a flare up I end up with gangrene and whatever part is being attacked turns black and sometimes (I apologize, it sounds so gross) but I have actually had small areas of the outer edge of my ear break off. The last flare I had the whole outside cartilage turned black on my right ear and almost ate a hole through it.

It took 3 years of flares for someone to finally diagnose me. That is also when they diagnosed me with the vasculitis.

Does anyone else also have vasculitis and the RP? It's so painful when I have a flare up. This last time I went to the ER hoping they could help me by cleaning my ear and helping me but, they just sent me home with a paper on gangrene and told me I needed to have a surgeon clean my ear. I was heartbroken because I had stupidly thought that they might help me set that up.

I have to find a Rheumatologist that can handle the PAN and RP but because I am told it's rare to have both my current Rheumatologist said I will need a specialist to help me because sadly it's beyond her scope of knowledge.

Does anyone else deal with their ear cartilage turning black? I am starting to feel that familiar pain in both ears sadly, I have started the methal prednisone (sp) hoping to stop it but usually it goes from pain to a black area that spreads quickly. I now have been told once I finish the steroid pack to take 20mg of prednisone 3xs a day to try and catch it before it can blow up. These flares last for months. My last one started in November of last year and lasted until April before we got it under control.

Funny it's flaring again in November this year too.

If you have read my whole reply, thank you.

My family doesn't understand or know how to help me. My ENT is sending me for a cat scan of my ears and surrounding cartilage. Plus, I am having my chest cat scanned too because I am having pain around my rib cage and trouble breathing.

I'm hoping to find a community of people who understand what I am going through and I can talk to because right now I feel a bit alone and hoping that someone might have some ideas on what might help me when I have the flare ups or just be willing to listen to me.

Thank you.