1. < Autoimmune Diseases

Relapsing polychondritis

Posted by beckyrpsiagnosis @beckyrpsiagnosis, Nov 2, 2024

Hello, I am new to this discussion and I was recently diagnosed with relapsing polychondritis. Does anyone else on this group have this Auto immune diagnosis?
If so I would appreciate any information and specialist that are located in Phoenix, Arizona and does anyone know if the Mayo Clinic In Scottsdale, Arizona treats Relapsing polychondritis

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

julieblanford | @julieblanford | Jan 1 11:14am

Hi. I'm brand new to this group but have been diagnosed with RP, RA, Fibromyalgia,COPD, and severe asthma. The RP flares are typically in joints or,(when visible), ears. But I recently had a severe flare with chostochondritis. One of the most severe pains I have ever had. I also just finished a 45 day burst/taper of prednisone, as my pulminologist was concerned that my windpipe was in an inflamed flare. I am looking for a Rhuematologist who is knowlegdable in RP and not finding one in Iowa. Hoping to connect with others on this forum

REPLY
mizmaxg | @mizmaxg | Jan 2 8:07am

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.

REPLY
2 replies
julieblanford | @julieblanford | Jan 2 7:33pm
In reply to @mizmaxg "My first episode of RP was costochondritis; I agree that it's extremely painful, but then...the ear..." + (show)
@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.

Jump to this post

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

REPLY
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 2 8:15pm
In reply to @mizmaxg "My first episode of RP was costochondritis; I agree that it's extremely painful, but then...the ear..." + (show)
@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.

Jump to this post

@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!

REPLY
julieblanford | @julieblanford | Jan 2 8:31pm

Thank you. Will look into it!

REPLY
View MoreView Less
Please sign in or register to post a reply.