Relapsing Polychondritis

Posted by mfogs7521 @mfogs7521, Apr 17, 2018

wondering if anyone else had this disease?

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?

Liked by rpwarriorlady

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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.

Liked by rpwarriorlady

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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?

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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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@monikamouse

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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Any diagnosis. I have the same thing.

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@nibor63

Found a medication that helps immensely. Meloxicam. Making a difference in my sight and my ear pain.

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Wow! Meloxicam helps me too! Do you have a diagnosis?

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Yes. I do

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@monikamouse

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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Hello @monikamouse, I see that you have recently joined and would like to welcome you to Connect. You mentioned you have very painful ears. There is another discussion on Connect that you might want to read.

> Groups > Ear, Nose & Throat (ENT) > extreme outer ear pain
https://connect.mayoclinic.org/discussion/extreme-outer-ear-pain/

Has your doctor given you any suggestions or treatments to help with the ear pain?

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@nibor63

How old are you? Mine started at menopause.

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Mine too! Seen this in pregnant women. Seems to be hormone related.

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Hello @mcwilliamssr — Welcome to Connect. I thought I would answer your private message here in the discussion that you mentioned so all you have to when you receive the email notification for this post is click the View & Reply button at the bottom of the email. That will take you to this post you are reading. Then just click the Reply button below and type your question.

The question in your message if I read it correctly is that your wife came down with blue eyes and more recently the whites of eyes have a blue tint. She seems fatigued and at night for no reason, she starts coughing for several minutes then things calm down and she goes on to sleep. Could this be the early onset for relapsing Polychondritis?

I'm not able to answer your question since I have no medical training or background. I'm hoping other members can share their experience and symptoms that may help answer your question. Has your wife discussed her symptoms with her doctor?

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Does anyone have Relapsing Polychondritis?

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@polytina

Does anyone have Relapsing Polychondritis?

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Hi @polytina, welocme to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about polychondritis. I did this so you can connect with @nibor63 @mcwilliamssr @rpwarriorlady @monikamouse @ethellee97 and others talking about RP and sharing their experiences.

Can you share a bit more about yourself and what you're dealing with? What symptoms do you manage? What's the biggest challenge? Are you currently on any medication or have had other treatments that help?

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@nibor63

How old are you? Mine started at menopause.

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I went through men’s pause starting in my 30’s, had some symptoms but not sick enough then. I was diagnosed in 2015 by Mayo Clinic and I got there just in time. I had severe ear pain, nasal pain, severe back pain, scleritis, trouble breathing, etc. ended up having open heart surgery at Mayo. I see my cardiologist and rheumatologist yrly. Before I went, I had been to different ER’s and doctors with no outcome. I was in so much pain that suicide was seriously thought about. I now am on several meds including Remicade and methotrexate which has helped a lot, but still have bad days more than good days.

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