In depth
Relapsing polychondritis: common questions
Somebody searched the whole literature for a guideline in this disease. They turned up 20 citations. Not one of them was a guideline. So they listed eleven things the field needs instead.
What the research found.
Somebody searched for guidelines in relapsing polychondritis. The search turned up 20 citations. None of them was a guideline. So eleven areas of unmet need were listed instead.
One guideline covers every adult going on long steroids. It's the 2017 American College of Rheumatology guideline. It strongly advises getting enough calcium and vitamin D. It advises weight-bearing and strength work. It advises stopping smoking. And it advises limiting alcohol.
One study followed 295 patients. Airway trouble showed up in 70.5 percent. The voice box was the commonest spot, at 82.2 percent. A quarter of those people needed a hole made in the windpipe, at 25.7 percent. The main cause of death was the airway closing.
One hospital looked at its own inpatients with this illness. The heart was involved in 24.1 percent of them. Its authors call regular heart tracings and heart scans necessary in this disease.
No guideline exists, and somebody checked
A European reference network went looking for guidelines in relapsing polychondritis. They searched the literature properly. The search turned up 20 citations in total. Not one of them was a guideline.
What came out of that work instead was a list. It named eleven areas the field needs. It covered how to diagnose the disease and how to treat it. It covered pregnancy, and disease that starts in childhood. It covered how often to follow up and screen. It covered surgery and anesthesia, because this disease reaches the windpipe. And it covered cancer risk and preventing infection.
Read that list as the field's own account of what it doesn't know. That beats borrowed advice dressed up as settled. And that's the only other option. And it's why this page reads the way it does.
Why the airway keeps coming up
Surgery and anesthesia got their own entry on that list for a reason. This disease attacks cartilage. Your windpipe is cartilage. So airway involvement here is a known and serious feature. It isn't an odd complication.
Two things follow from that. Anesthesia and surgery need planning rather than routine handling. So raise it with any surgeon or anesthetist yourself. Don't assume it's in your notes. And breathlessness, a change in your voice, or noisy breathing all need seeing promptly. They don't belong under being unfit.
Nothing else on this page counts as much. The lifestyle research here is too thin to quote from. In a disease like that, the airway is where your attention belongs.
Why there's no exercise figure here
The published exercise work in this disease covers a few people at a time. None of it compared a program against anything. So none of it can tell you whether training changes what you can do.
We've left those numbers off. Printing them with a warning attached would not be better. A figure from seven people reads on a page just like a figure from seven thousand. A reader has no way to tell them apart. So it's better to know the research isn't there yet. That beats a number that can't carry weight.
That isn't a reason to sit still. The steroid guideline below still applies to most people here. It asks for weight-bearing and strength work. What this disease adds on top is the airway.
What applies through the treatment
Most people with this diagnosis take steroids. That brings the one firm recommendation available here. The 2017 American College of Rheumatology guideline covers every adult going on long steroids, at any age. Get enough calcium and vitamin D. Do weight-bearing and strength work. Stop smoking. And limit alcohol.
That reaches you through the drug rather than the disease. And it applies whatever put you on steroids. Carry those two words with you: weight-bearing and strength. They tell you a kind of work rather than leaving you to guess.
No trial of any diet exists in this disease. So consider what a diet sold for relapsing polychondritis is competing with. It's competing with a literature of 20 citations and no guideline. That's a low bar rather than a recommendation.
Living without a map
With no guideline, more rests on your individual clinician than in a commoner disease. More rests on what you report, too. So there's a case for staying with the same team. There's a case for asking what a recommendation is based on. And there's a case for describing changes in detail rather than in general terms.
The symptoms worth reporting follow the disease. It targets cartilage wherever it sits. So report ear or nose pain and swelling. Report changes in hearing or balance. Report red or painful eyes. Report joint pain. And above all, report any change in breathing or voice.
None of this is satisfying if you came here for a plan. What this page offers instead is an honest account of what's known. The specialists who looked hardest concluded the field needs eleven things it doesn't have. Knowing that is better than being handed confident advice with nothing behind it.
Common misconceptions.
Myth. There must be a guideline for this somewhere.
Reality. Somebody searched the whole literature. It turned up 20 citations. Not one was a clinical practice guideline. What came out of that work was a list of eleven things the field needs. Those cover how to diagnose it and how to treat it. They cover pregnancy, and disease that starts in childhood. They cover how often to follow up and screen. They cover surgery and anesthesia. And they cover cancer risk and preventing infection.
Myth. Exercise research exists for this condition.
Reality. Not any this site will quote. What's published covers a few people at a time. None of it tested a program against anything. Work that small can't tell the disease apart from being out of condition. Nor from the steroids. So we give you no figure from it. A weak number reads as firm once it's on a page, and that's the harm.
Myth. Reduced exercise capacity here is just being unfit.
Reality. It may be. It may not. That's why it's worth assessing rather than assuming. This disease attacks cartilage, and that includes your windpipe. Windpipe trouble is serious here. The unmet-needs list gives surgery and anesthesia their own entry. So breathlessness here deserves an assessment. It doesn't deserve a training plan.
Myth. Advice for other rheumatic diseases applies to me.
Reality. It's what gets used, because there's nothing else. It also hasn't been tested here. This disease attacks cartilage in the ears, the nose, the joints, and the airway. That's a different spread from any disease whose guidelines get borrowed. And note what the reference network did about the absence. It listed what needs studying. It didn't recommend borrowing.
Questions patients ask.
Are there guidelines for relapsing polychondritis?
No. A search turned up 20 citations in the whole literature. None of them was a clinical practice guideline. In their place, eleven areas of unmet need were listed. Those cover how to diagnose it and how to treat it. They cover pregnancy, and disease starting in childhood. They cover how often to follow up and screen. They cover surgery and anesthesia, because this disease reaches the windpipe. And they cover cancer risk and preventing infection.
Why does surgery get its own entry on that list?
Because this disease attacks cartilage. And your windpipe is cartilage. One study of 295 patients found airway trouble in 70.5 percent of them. So anesthesia and surgery are a specific problem here rather than a general one. It's why a group listing unmet needs picked it out. Tell any anesthetist or surgeon that you have this diagnosis. Don't assume it's already in your notes.
How likely is my airway to be involved?
More likely than most people expect. One study followed 295 patients. Airway trouble showed up in 70.5 percent. The voice box was the commonest spot, at 82.2 percent. A quarter of the people with voice box involvement needed a hole made in the windpipe. That was 25.7 percent. Two things raised that risk. Being younger when it started, and having breathing symptoms first.
Should my heart be checked?
There's a case for it. One hospital looked at its own inpatients with this illness. The heart was involved in 24.1 percent of them. Its authors call regular heart tracings and heart scans necessary here. That's one hospital, and those were admitted patients. So hold the figure loosely. It's still a fair thing to raise at a visit.
What's known about exercise capacity here?
Less than you'd want. There's no trial. The published work covers a few people at a time. It wasn't built to test anything. So this page gives you no figure for it. What applies to you comes through your treatment instead. That part does have a guideline behind it.
Has anyone tested an exercise program?
No. Nothing published here compares a program against anything. Reports on one or two people can't do that. They can't tell a training effect from the disease settling down on its own. So there's no before and after figure to give you, and inventing a plausible one is the thing this site won't do.
Should I be exercising?
The reasons everybody has still apply. And one firm recommendation covers most people with this diagnosis. Anyone on long steroids falls under the 2017 American College of Rheumatology guideline. It strongly advises weight-bearing and strength work. It advises calcium and vitamin D alongside that. It advises stopping smoking. And it advises limiting alcohol. That reaches you through your treatment, not your disease.
Is there a diet for this condition?
No trial of any diet exists here. What applies is the steroid guideline above, for the same reason it applies to exercise. So think about what a diet sold for relapsing polychondritis is competing with. It's competing with a literature of 20 citations and no guideline. That's a low bar. It isn't a recommendation.
Why is there so little research?
The disease is rare. Gathering enough people for a trial is genuinely hard. And the research effort that exists goes to diagnosis and treatment. The network exercise that produced the unmet-needs list exists because somebody recognized the absence. What it produced was a list of what needs doing. It wasn't a set of answers.
What counts most in managing this?
Getting your airway watched. That's what the specialists flagged. Windpipe involvement is why surgery and anesthesia appear on the unmet-needs list. It's the feature that sets this disease apart from most rheumatic disease. So new breathlessness counts. So does a change in your voice. So does noisy breathing. Those need seeing promptly. They don't wait for a routine appointment.
What should I take to my next appointment?
Any change in breathing or voice comes first, for the reasons above. Beyond that, several things count. Ear or nose pain and swelling. Changes in hearing or balance. Red or painful eyes. And joint pain. This disease targets cartilage wherever it sits. There's no guideline here. So what you report does more work than it would elsewhere.
References.
- Rednic S; Damian L; Talarico R et al. Relapsing polychondritis: state of the art on clinical practice guidelines. RMD Open. 2018;4:e000788. 10.1136/rmdopen-2018-000788Systematic literature review for clinical practice guidelines in relapsing polychondritis
- Buckley L; Guyatt G; Fink H et al. 2017 American College of Rheumatology Guideline for the Prevention and Treatment of Glucocorticoid‐Induced Osteoporosis. Arthritis & Rheumatology. 2017;69:1521-1537. 10.1002/art.40137GRADE-based clinical practice guideline
- Chen N; Zheng Y. Characteristics and Clinical Outcomes of 295 Patients With Relapsing Polychondritis. J Rheumatol. 2021;48:1876-1882. 10.3899/jrheum.210062Retrospective cohort of 295 patients with relapsing polychondritis at Beijing Tongren Hospital
- Yin R; Zhao M; Xu D et al. Relapsing polychondritis: focus on cardiac involvement. Front Immunol. 2023;14:1218475. 10.3389/fimmu.2023.1218475Screening of patients with relapsing polychondritis hospitalised between December 2005 and December 2021 at Peking Union Medical College Hospital
This page gathers the published research on this subject into one place. The studies behind it were published between 1989 and 2026, and every figure links to the paper it came from. Those studies were peer reviewed. This summary of them was not. Dr. Sarah Luebker is reviewing these pages one at a time and has not reached this one yet, so it carries no medical review date and nothing here is her opinion or her advice to you. Each page gets updated as she reaches it. It is here in the meantime because the science is worth having in one organized place that is easy to find and easy to read. Talk to your own clinician before acting on any of it.