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.
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