In depth
Relapsing polychondritis and exercise
There's no exercise study here we'll put a number on. Your airway counts for more than all of it. That's cartilage too.
What the research found.
Somebody searched for guidelines in relapsing polychondritis. The search turned up 20 citations. None was a guideline. So eleven areas of unmet need were listed. One was surgery and anesthesia, because this disease reaches the windpipe.
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 with this disease. Airway trouble showed up in 70.5 percent of them. The voice box was the commonest spot, at 82.2 percent. A quarter of those people needed a hole made in the windpipe. That was 25.7 percent. The main cause of death was the airway closing.
One study matched 30 patients against 60 healthy people. High blood pressure hit 53.3 percent of patients, against 23.3 percent of controls. The P value was 0.008. Diabetes hit 16.7 percent against 3.3 percent, at 0.039.
Pallo and colleagues, Revista Brasileira de Reumatologia, 2017
Nothing here tests a program
There's no exercise trial in relapsing polychondritis. What's published is a small number of reports covering a few people each. None of them compared a program against anything. That's too little to carry a figure on a page a patient reads.
So you won't find a number here. That's a decision rather than an oversight. A figure from four or seven people reads on a page just like a figure from four thousand. A reader has no way to tell them apart. Leaving it out is more honest than printing it with a warning attached.
What that leaves is real and it's worth having. Two things apply to you here. One comes from what the field says about itself. The other comes from your treatment.
Why the airway comes first
This disease attacks cartilage. Your windpipe is cartilage. So airway involvement here is a known feature rather than an odd complication. And that changes what counts as a warning sign while you exert yourself.
The clearest published sign of how seriously this gets taken comes from an unexpected place. A European network went looking for clinical practice guidelines in this disease. It found none. So it named eleven areas of unmet need instead. One of them was surgery and anesthesia, because this disease reaches the windpipe.
Think about what that means. A group listing what a whole field lacks singled out anesthesia. Two things follow in practice. Tell any anesthetist or surgeon that you have this diagnosis, rather than assuming it's in your notes. And get new breathlessness, a change in your voice, or noisy breathing seen promptly. Don't adjust your training instead.
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 at one.
It's also the only exercise wording with a paper behind it that applies here. Nothing else reaches this bar. That tells you how thin the rest of it is.
Starting from where you are
There's no guidance built for this disease, and no trial. So the sensible route is to start from what you can do now, with somebody who understands that no protocol applies here. That's unsatisfying and it's honest. A frequency, a duration, and an intensity for relapsing polychondritis would be invented rather than sourced.
It's worth measuring where you're starting from. Your own numbers at the outset give you something to compare against later. That's more use to you than a figure lifted from seven strangers. And it's the kind of comparison nobody has published in this disease.
What sets this disease apart from most on this site is what should stop a session. Breathing changes come first, for the reasons above. Ear or nose pain and swelling belong in an appointment too. So do changes in hearing or balance. So do red or painful eyes. This disease reaches cartilage wherever it sits.
Common misconceptions.
Myth. Reduced exercise capacity here is just being out of condition.
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 airway. The specialists who listed unmet needs picked out surgery and anesthesia for that reason. So breathlessness here deserves an assessment. It doesn't deserve a training plan.
Myth. There's exercise research in this disease.
Reality. Not any this site will quote. What exists is a few reports on a few people each. None of them tested a program against anything. Work that small can't separate the disease from being out of condition, or 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. Advice from other rheumatic diseases will do.
Reality. It's what gets used. It also hasn't been tested here. This disease targets 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 endorse borrowing.
Myth. No research means exercise must be risky here.
Reality. That isn't what it means either. No research means nobody has measured it. The steroid guideline still applies to most people with this diagnosis, and it asks for weight-bearing and strength work. What this disease adds is the airway, and that's a reason to watch your breathing rather than to sit still.
Myth. Heart risk isn't part of this disease.
Reality. One study compared 30 patients against 60 matched healthy people. High blood pressure hit 53.3 percent of the patients and 23.3 percent of the controls. The P value was 0.008. Diabetes hit 16.7 percent against 3.3 percent, at 0.039. That's 30 people, so hold it loosely. It's still a reason to get both checked, and a reason to move.
Cautions specific to this condition.
- Get new breathlessness, a change in your voice, or noisy breathing seen promptly. Don't adjust your training instead. Windpipe involvement is what makes this disease different.
- Tell any anesthetist or surgeon that you have this diagnosis. Don't assume it's in your notes. Airway involvement changes how anesthesia gets planned.
- The 2017 steroid guideline asks for weight-bearing and strength work in anyone on a long course. That's its own wording. Your team can say whether it fits you.
- Report ear or nose pain and swelling. Cartilage inflammation there is typical of this disease. It's what the disease is named for.
- Expect no program built for this disease to exist. So start from where you are now, with somebody who knows that.
- Raise any change in hearing, balance, or your eyes. This disease reaches those parts too.
Discuss any change with the rheumatologist who manages your care. Nothing here replaces that conversation.
Questions patients ask.
What does the exercise research say here?
Nothing we'll quote. There's no trial. The published work is a few reports covering a few people each. None of it tested a program. That's too little to carry a number on a page like this. So this page tells you what applies through your treatment instead, and what should stop a session.
Has anybody tested a training program?
No. Nothing published here compares a program against anything. Reports on one or two people can't separate 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.
So should I exercise?
The reasons everybody has still apply. And one 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.
What should stop me?
New breathlessness. A change in your voice. Noisy breathing. Get those seen promptly, not at a routine visit. One study of 295 patients found airway trouble 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. And the main cause of death was the airway closing. Those symptoms are the reason this page reads the way it does.
Is there a heart reason to exercise here?
There's a signal worth knowing. One study matched 30 patients against 60 healthy people. High blood pressure hit 53.3 percent of patients and 23.3 percent of controls, at a P value of 0.008. Diabetes hit 16.7 percent against 3.3 percent, at 0.039. Thirty people is a small study. But both of those respond to moving more, so it's a fair reason to.
Why does anesthesia get mentioned on an exercise page?
Because it's the clearest published sign here. It shows how seriously airway involvement gets taken. A European network searched for guidelines in this disease. It found none. So it named eleven areas of unmet need. One was surgery and anesthesia. That's because this disease reaches the windpipe. So tell any anesthetist or surgeon your diagnosis. Don't assume it's on file.
Is there a program I should follow?
None exists. Building one from another disease means importing assumptions that may not hold here. This disease targets cartilage in the ears, the nose, the joints, and the airway. That's a different spread from any disease whose guidelines get borrowed. So start from where you are now. And do it with somebody who knows there's no protocol. That's the honest route.
Why is there so little research?
The disease is rare. Gathering enough people for a trial is genuinely hard. And the effort that exists goes to diagnosis and treatment. One search turned up 20 citations in the whole literature. None was a clinical practice guideline. What it produced instead was a list of eleven unmet needs. Read that list as the field's own account of what it doesn't know.
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
- Pallo PAO; Levy-Neto M; Pereira RMR et al. Relapsing polychondritis: prevalence of cardiovascular diseases and its risk factors, and general disease features according to gender. Rev Bras Reumatol Engl Ed. 2017;57:338-345. 10.1016/j.rbre.2017.02.003Cross-sectional single-centre study of 30 relapsing polychondritis cases seen between 1990 and 2016
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.