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Relapsing Polychondritis

Posted by dma053 @dma053, Jun 24, 2024

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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nanied | @nanied | 3 days ago
In reply to @sweetkandy76 "@slkanowitz thanks for the heads up on the Voltaren, when my ears turn red they burn..." + (show)
Profile picture for sweetkandy76 @sweetkandy76

@slkanowitz thanks for the heads up on the Voltaren, when my ears turn red they burn and hurt. I was recently diagnosed with Relapsing Polycondritis. I also have Addison’s disease, Lupus SLE, Cushings and Pulmonary Hypertension. I constantly ask why me? Why do I have to bear all this 💩 diseases??
Is this Karma? Was I someone horrible in a previous life, Genghis Khan or Hitler. Sorry I have a dark warped sense of humor! 🤪

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@sweetkandy76 what did you hear about Voltaren? Besides a possibility of relapsing polycondritis (RP) I also have fixed drug eruption (FDE) which triggers from nsaid and I believe is in Voltaren. I was "diagnosed" with RP at the same time I foolishly took Aleve and had a drug eruption. So I'm not convinced the PN diagnosed was correct. I am the only patient these doctors have seen with either condition therefore I'm skeptical. PN and FDE can look similar. I also learned that I should a diet containing nightshade veggies if it's PN. So much to learn. I should add that FDE was confirmed with a biopsy several years ago. Again that doctor admitted she hadn't ever heard of until she saw the test results. 😵‍💫

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aspyres | @aspyres | 2 days ago

I have biopsy confirmed Hypocomplementic Urticarial Vasculitis Syndrome, and am either allergic to NSAIDs or they trigger the HUVs rashes. I also have Relapsing Polychondritis. I have been prescribed the Voltaren, but I have never tried it because I was concerned it would cause me to have a flare.

I would also be interested to know if others have tolerated it.

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nanied | @nanied | 15 hours ago
In reply to @aspyres "I have biopsy confirmed Hypocomplementic Urticarial Vasculitis Syndrome, and am either allergic to NSAIDs or they..." + (show)
Profile picture for aspyres @aspyres

I have biopsy confirmed Hypocomplementic Urticarial Vasculitis Syndrome, and am either allergic to NSAIDs or they trigger the HUVs rashes. I also have Relapsing Polychondritis. I have been prescribed the Voltaren, but I have never tried it because I was concerned it would cause me to have a flare.

I would also be interested to know if others have tolerated it.

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@aspyres I agree with your resistance to using anything orally or topically with NSAID's.

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