Relapsing Polychondritis

Posted by mfogs7521 @mfogs7521, Apr 17, 2018

wondering if anyone else had this disease?

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

Husband was diagnosed with relapsing polychondritis. Is currently having radiation for prostate cancer. Was taking methotrexate but quit. Because seems to be in remission, not seeing any symptoms of RP. What is the chance of it returning? Outside the cancer, seems quite well.

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@ethellee97

Husband was diagnosed with relapsing polychondritis. Is currently having radiation for prostate cancer. Was taking methotrexate but quit. Because seems to be in remission, not seeing any symptoms of RP. What is the chance of it returning? Outside the cancer, seems quite well.

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Hello @ethellee97, welcome to Mayo Clinic Connect. I'm tagging our moderator @ethanmcconkey to see if we should move your discussion to the following active discussion where you can meet other members discussing relapsing polychondritis.

> Groups > Autoimmune Diseases > Relapsing Polychondritis
-- https://connect.mayoclinic.org/discussion/relapsing-polychondritis/

You may also be interested in the follow Mayo Clinic patient's story -- “I Feel Like Me Again” | Sharing Mayo Clinic
-- https://sharing.mayoclinic.org/2014/10/06/i-feel-like-me-again/

I'm glad to hear it is remission. Is your husband worried about it returning? Hopefully other members in the above discussion will be able to provide some answers for you.

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Hi @ethellee97 I wanted to join @johnbishop in welcoming you to Connect. As he suggested, I moved your post to this existing discussion on relapsing polychondritis so that you can connect with others who experience this condition. Just click VIEW & REPLY in your email notification to see your post.

As John mentioned, @ethellee97 is your husband worried about it returning?

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No, he’s not worried about it. But sort of in denial. He doesn’t want to talk about it so we don’t. It’s like one day at a time. Worry when there’s something to worry about.

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@kanaazpereira

Hi @mfogs7521,

I wanted to tell you about this other discussion on Connect, where a few members have posted about relapsing polychondritis:
– extreme outer ear pain https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

When were you diagnosed with this condition, @mfogs7521? Did you have specific symptoms that led to the diagnosis?

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Both ears red and swollen. The disease affects the cartilage. Can be throughout the body. Is it possible to only have the one occurrence? He’s been off methotrexate for 3 months and so far good.

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I have RP, I suffered swollen joints randomly ever since I was a kid, I am 49 also as a child I had bronchitis often. The meds never helped.....it would just eventually go away, that should have been a clue that something else was going on. I have eliminated certain things from my diet that have helped with flares, but nothing has “put it in remission” so far. I have joined here to find out what progress others are making in managing this disease.

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Hello @rpwarriorlady, welcome to Connect. I don't have relapsing polychrondritis but the following members have discussed it in a post. @jentallygirl, @marilly, @jennyt, @nibor63, @cherfenn, @ellienewfan can you share any information with @rpwarriorlady ?

The National Institutes of Health has some information here for relapsing polychondritis:
https://rarediseases.info.nih.gov/diseases/7417/relapsing-polychondritis

@kanaazpereira mentioned the following discussion on Connect in an earlier post where a few members have posted about relapsing polychondritis:
– extreme outer ear pain https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

When you diagnosed with RP did you have specific symptoms that led to the diagnosis?

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@rpwarriorlady

I have RP, I suffered swollen joints randomly ever since I was a kid, I am 49 also as a child I had bronchitis often. The meds never helped.....it would just eventually go away, that should have been a clue that something else was going on. I have eliminated certain things from my diet that have helped with flares, but nothing has “put it in remission” so far. I have joined here to find out what progress others are making in managing this disease.

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Husband was diagnosed with RP over a year ago. Given Prednisone for 6 weeks, then Methotrexate. He quit when diagnosed with prostate cancer. Has not had a flare up since. All is good here, so far. Diagnosis came from red swollen ears.

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I'm 47.I have multiple autoimmune disease, immunoglobulin defiency disease, dysautonomia w POTS and EDS. I have this condition. Very painful ears. I used to never be able to bend them, now they fold down. Can't tolerate glasses on my nose.

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@johnbishop

Hello @rpwarriorlady, welcome to Connect. I don't have relapsing polychrondritis but the following members have discussed it in a post. @jentallygirl, @marilly, @jennyt, @nibor63, @cherfenn, @ellienewfan can you share any information with @rpwarriorlady ?

The National Institutes of Health has some information here for relapsing polychondritis:
https://rarediseases.info.nih.gov/diseases/7417/relapsing-polychondritis

@kanaazpereira mentioned the following discussion on Connect in an earlier post where a few members have posted about relapsing polychondritis:
– extreme outer ear pain https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

When you diagnosed with RP did you have specific symptoms that led to the diagnosis?

Jump to this post

The diagnosis was confirmed recently, by 3 different Dermatologists, as well as my primary health care doctor after a biopsy during an inflammation flare up but have had symptoms and relapsing flare ups for 23 years. That I have directly associated with this disease. As a child, I suffered swollen knee joints, hands and elbow tenderness. Specifically over the last 6 years redness, pain swollen lymphatic nodules, oozing sores in and around both ears in the vomiting, fevers unable to walk pain free I was even tested for Malaria. As it was thought to be a reaction to mosquitos, or insect bites. I was afraid I had Zika! But, RP.

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