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Relapsing polychondritis

Autoimmune Diseases | Last Active: Jan 2 8:31pm | Replies (15)

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@mizmaxg

My first episode of RP was costochondritis; I agree that it's extremely painful, but then...the ear attacks are no picnic, either. Like you, I also have RA, so it's hard to know which is causing the joint pain. My general feeling is that I don't care as long as I can control it. My monthly abatacept (Orencia) infusions for RA seemed to reduce the frequency of the RP flares (mostly ear attacks, some costo and nose attacks), but my rheumatologist (central Massachusetts) is only mediocre. I haven't found a good one nearby and don't know a soul in Iowa, so I'm sorry I can't help.

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Replies to "My first episode of RP was costochondritis; I agree that it's extremely painful, but then...the ear..."

You have helped immensely just by responding. Thank you. So nice to hear from fellow sufferers.

@julieblanford @mizmaxg You two are looking for possible rheumatologists in your area. You can check with these two autoimmune organizations which keep lists of doctors who specialize in different AD.
https://rarediseases.info.nih.gov/ Genetic and RareDisease organization
https://rarediseases.org/. National Organization for Rare Diseases
Try these and let me know what you learn!