Mayo Clinic Connect
wondering if anyone else had this disease?
Hello @mfogs7521 — welcome to Mayo Connect. It's a great place to ask questions and learn what others are doing for treatments for similar health problems. I don't have relapsing polychrondritis but I did a search and found members who have discussed it in a post. @marilly, @jennyt, @nibor63, @cherfenn, @ellienewfan can you share any information with @mfogs7521 ?
The National Institutes of Health has some information here for relapsing polychondritis:
@mfogs7521 do you have any questions you want to ask or information you are looking for?
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?
Hello, I have RP, and actually am searching for more expert help now… I’ve just entered a new crisis phase I think, my ears are insanely complicated.
There is a wonderful group on FB for RP…. I highly recommend it!
With RA my eyes are getting worse. My hearing is already damaged.
Jump to this post
Found a medication that helps immensely. Meloxicam. Making a difference in my sight and my ear pain.
Have you been diagnosed?
Have not been diagnosed! One doctor suspects an auto-immune disease or several, but unwilling to diagnose. There are only two things that I have been able to come up with based on my research. One is relapsing poly chondritis, the other is a form of cancer. Doc put me on Meloxicam and it is working to keep my ear pain at bay. I also have foot pain and that is much better on the medication as well. Have serious bowel issues, also. Much better.
Liked by Kanaaz Pereira, Connect Moderator
I was diagnosed a year ago this past Jan, it started with a hole in my spetum and my nose detaching on the sides, I have lost most of my spetum now, I will have have to have my nose reconstructed at some point but that can't be done until they can get the RP under some kind of control or get in to remission, lots of pain in joints, bad back problems and sciatica from everything being so inflamed, hip issues too, been going to the University of Michigan for the past year and feel like we haven't gotten anywhere, hopefully I will have a new rheumatologist this week
How old are you? Mine started at menopause.
NIH (National Institute of Health) has a study there going on I am in for Vasculitis and RP is included. You can call them to get on their list of applicants. It comes in under the RARE disease program. They are taking people who are most serious in first so do nto be surprise if someone gets in before you. I have systemic involvement including heart and lungs so went up on the list but it took some months They evaluate you test you and send recommendations to your physician to implement. Mine Implemented this week start Enbrel. I go back in 4 months. They do nto pay travel. The evaluation is free. They will try to house you if in the Lodge on campus but no guarantee's that all of us can get rooms Low income gets priority for free housing. But the other thing you can do is that NIH welcomes physician inquiries to assist with suggestions and nailing the diagnosis. I have intermittent ear flares very infrequently. All joints affect. Sacroiliitis adn retinal vasculitis.
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.
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
You may also be interested in the follow Mayo Clinic patient's story — “I Feel Like Me Again” | Sharing Mayo Clinic
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.
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?
Liked by John, Volunteer Mentor
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.
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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