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Relapsing Polychondritis

Autoimmune Diseases | Last Active: Mar 25 12:23pm | Replies (39)

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@lbynum

I am sorry that I failed to answer you a lot sooner.
I do go to Duke University for my eyes as RP has done some damage there. I see a Optomalogist there. I have seen an ENT there as well. A surgeon for a possible CFS leak, my Rheumatologist thought I had, the imaging was poorly done at my local hospital. Thankfully I didn't have one. I believe the doctor that I see is really good, I still suffer with ongoing pain, swelling, I also see other doctors. An orthopedic doctor who helps with the damage in my spine, knees, hips. As well as other doctors. I am just curious as to what other treatments others have had. I have never used steriods except on two short occasions. I have had both knees replaced and can't risk the damage from Steriods. I have osteoporosis. Plus, Sojgrens, Hypothyroidism, Chronic Lymphocytic Thyroiditis, RA, MGD, and so on.

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Replies to "I am sorry that I failed to answer you a lot sooner. I do go to..."

Hi.
I have had a RP diagnosis for 8 years. (Sjogren’s 3 years) My GP and Rheumo doctors both saw me in an ear flare. Additional testing helped with the diagnosis. I’ve controlled it some with diet, Antihistamines, short tapers of prednisone, Meloxicam, but had to stop Meloxicam due to digestive issues.

The last year has been much harder and Gp recommended seeing a specialist( like there lots of RP specialists out there?) Mostly I just fight through the pain. I have been reluctant to start any meds though I know damage may be occurring.

I noticed you said you went to Duke University for treatment. I’m looking for someone at UNC or Duke that may have actually have RP patient experience, though I know we are all so different. Would you mind sharing the rheumatologist you see at Duke?

Best wishes in your journey.