1. < Autoimmune Diseases

Relapsing Polychondritis

Posted by dma053 @dma053, Jun 24 4:34pm

Anyone have relapsing polychronditis? How were you diagnosed? And what treatment are you doing? My rheumatologist recommended Plaquenil but I have concerns about the side effects.
Thanks!

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katie360 | @katie360 | Jun 25 9:05am

I do... I only take meds when in an attack stage... and then it is prednisone... starting quite high... and slowly tapering....

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dma053 | @dma053 | Jun 25 11:10am

Thanks katie360. I think I’d prefer that than meds constantly.

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1 reply
slkanowitz | @slkanowitz | Jun 26 3:57am
In reply to @dma053 "Thanks katie360. I think I’d prefer that than meds constantly." + (show)
@dma053

Thanks katie360. I think I’d prefer that than meds constantly.

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I have relapsing polychondritis, RA, systemic lupus, and CIDP. My RP is the least of my problems. as my symptoms are mild and infrequent. I was diagnosed because my rheumatologist recognized my nose as a “saddle nose “, where the bridge of nose is somewhat collapsed. We looked at old pictures of me and saw the nasal bridge changes. The only symptom I get is painful, tender external ear cartilage. I have also had costochondritis a few times Both are infrequent and don’t last long, so I am lucky. If you get flares with normal periods in between, the prednisone or a good NSAID seems like a good way to treat it to avoid being on a med all the time. I find diclofenac (Voltaren) gel helps my ears when they hurt. It’s OTC, an anti inflammatory topical. I hope your symptoms are not severe and respond well to treatment!

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1 reply
dma053 | @dma053 | Jun 28 12:56pm
In reply to @slkanowitz "I have relapsing polychondritis, RA, systemic lupus, and CIDP. My RP is the least of my..." + (show)
@slkanowitz

I have relapsing polychondritis, RA, systemic lupus, and CIDP. My RP is the least of my problems. as my symptoms are mild and infrequent. I was diagnosed because my rheumatologist recognized my nose as a “saddle nose “, where the bridge of nose is somewhat collapsed. We looked at old pictures of me and saw the nasal bridge changes. The only symptom I get is painful, tender external ear cartilage. I have also had costochondritis a few times Both are infrequent and don’t last long, so I am lucky. If you get flares with normal periods in between, the prednisone or a good NSAID seems like a good way to treat it to avoid being on a med all the time. I find diclofenac (Voltaren) gel helps my ears when they hurt. It’s OTC, an anti inflammatory topical. I hope your symptoms are not severe and respond well to treatment!

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Thank you! You have a lot to handle - I hope you are doing well!

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