In depth
Relapsing polychondritis and exercise
There's no exercise study in relapsing polychondritis that this page will put a number on. Your airway counts for more than any of it, because the cartilage this disease inflames includes your windpipe. So what follows is the guidance that reaches you through your treatment, and the symptoms that should send you to your team rather than into a session.
What the research found.
A European reference network searched the literature for clinical practice guidelines in relapsing polychondritis and turned up 20 citations. Not one of those 20 was a guideline, so rather than writing one the group set down eleven areas of unmet need for the field to work through. One of the eleven was surgery and anesthesia, and the reason given was that this disease reaches the windpipe.
One guideline covers every adult going onto a long course of corticosteroids, which is the 2017 American College of Rheumatology guideline. It strongly advises getting enough calcium and vitamin D, and it asks for weight-bearing and strength work alongside them rather than leaving the kind of exercise open. It also advises stopping smoking and limiting alcohol, at any age and whatever put the person on the drug.
One study followed 295 patients with this disease and found airway trouble in 70.5 percent of them. The voice box was the most common spot at 82.2 percent, and 25.7 percent of the patients whose voice box was involved needed a hole made in the windpipe. The main cause of death in that cohort was the airway closing, which is why the airway is at the top of this page.
One study matched 30 patients with this disease against 60 healthy people. High blood pressure appeared in 53.3 percent of the patients against 23.3 percent of the controls, at a P value of 0.008. Diabetes appeared in 16.7 percent against 3.3 percent, at a P value of 0.039, and 30 patients is a small group to read either figure from.
Pallo and colleagues, Revista Brasileira de Reumatologia, 2017
Nothing here tests a program
There's no exercise trial in relapsing polychondritis, and what's published instead is a small number of reports covering a few people each. Not one of them compared a program against anything, so not one can tell you what training does in this disease. That's too little to put a figure on a page a patient reads and trusts.
So you won't find a number here, and that's a decision rather than an oversight on somebody's part. A figure drawn from four or seven people appears on a page looking just like a figure drawn from four thousand, and a reader has no way to tell the two apart. Leaving it out is more honest than printing it with a warning attached, because the warning never survives the number once somebody repeats it.
What that leaves is real and it's worth having, even though it isn't what you came looking for. Two things apply to you here, and one comes from what the field says it still lacks. The other reaches you through your treatment rather than through the disease itself, which turns out to be where the firmest wording on this whole page happens to live.
Why the airway comes first
This disease inflames cartilage, and your windpipe is cartilage, which is the whole reason this page reads differently from every other exercise page on the site. Airway involvement here is a known feature of the illness rather than an odd complication somebody stumbled onto. That changes what counts as a warning sign while you're exerting yourself.
The clearest published sign of how seriously this gets taken comes from a search for clinical practice guidelines. A European reference network went looking for them in this disease, turned up 20 citations in the whole literature, and found that not one of them was a guideline. So it named eleven areas of unmet need instead, and one of those eleven was surgery and anesthesia, because this disease reaches the windpipe.
Think about what that means, because a group listing everything a whole field lacks singled out anesthesia among eleven items. Two things follow from it in practice, and the first is to tell any anesthetist or surgeon that you have this diagnosis rather than assuming it appears in your notes. The second is to get new breathlessness, a change in your voice, or noisy breathing seen promptly rather than adjusting your training around it.
What applies through the treatment
Most people with this diagnosis take corticosteroids, and that brings with it the one firm recommendation available here. The 2017 American College of Rheumatology guideline covers every adult going onto a long course of them, at any age. It strongly advises getting enough calcium and vitamin D, doing weight-bearing and strength work, stopping smoking, and limiting alcohol, and those are its own four items rather than a summary of them.
That reaches you through the drug rather than through the disease, and it applies whatever put you on a long course in the first place. Two words in it are worth keeping in mind, which are weight-bearing and strength. They name a kind of work rather than leaving you to guess at one, and that alone puts the guideline ahead of most of what gets said about exercise in rare disease.
It's also the only exercise wording on this page with a paper behind it that applies to you. Nothing else in the relapsing polychondritis literature comes anywhere near that bar, and the distance between the guideline and everything else is not a small one. That fact tells you more about the state of the research here than any figure a small study could have offered.
Starting from where you are
There's no guidance built for this disease and no trial to build it from. So the sensible route is to start from what you can do now, and to do it with somebody who understands that no protocol applies here. A frequency, a duration, and an intensity written for relapsing polychondritis would be invented rather than sourced, and that's the thing this site refuses to do.
It's worth measuring where you're starting from, whatever that turns out to be. Your own numbers at the outset give you something real to compare against in six months, and they belong to you rather than to a study population. That's more use than a figure lifted from seven strangers, and it happens to be the comparison that has never been published in this disease.
What sets this disease apart from most on this site is the list of things that should stop a session. Breathing changes come first for the reasons set out above, and ear or nose pain and swelling belong in an appointment too rather than in a plan to train through them. So do changes in hearing or balance, and so do red or painful eyes, because this disease reaches cartilage wherever it happens to be.
Common misconceptions.
Myth. Reduced exercise capacity here is just being out of condition.
Reality. It may be, and it may not be, which is the reason it's worth assessing. This disease inflames cartilage and that includes your airway, which is the reason the specialists listing what the field lacks picked out surgery and anesthesia. So breathlessness here deserves an assessment rather than a training plan built around working through it.
Myth. There's exercise research in this disease.
Reality. Not any this site will quote, because what exists is a handful of reports on a few people each. Not one of them tested a program against anything, and work that small can't separate the disease from being out of condition or from the corticosteroids. So we give you no figure from it, since a weak number reads as firm once it's printed on a page and that's where the harm lies.
Myth. Advice from other rheumatic diseases will do.
Reality. It's what gets used in practice, and it also hasn't been tested here. This disease targets cartilage in the ears, the nose, the joints, and the airway, which is a different spread from any disease whose guidelines get borrowed. Note what the reference network did about the absence, because it listed what needs studying and endorsed no borrowing.
Myth. No research means exercise must be risky here.
Reality. That isn't what it means either, because no research means it has never been measured. The corticosteroid guideline still applies to most people with this diagnosis, and it asks for weight-bearing and strength work rather than rest. What this disease adds on top is the airway, and that's a reason to watch your breathing rather than a reason to sit still.
Myth. Heart risk isn't part of this disease.
Reality. One study compared 30 patients against 60 matched healthy people and found more of both. High blood pressure appeared in 53.3 percent of the patients and 23.3 percent of the controls, at a P value of 0.008, while diabetes appeared in 16.7 percent against 3.3 percent at 0.039. That's 30 people, so hold both figures loosely, and it's still a reason to get the two 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 corticosteroid 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?
There's no trial in relapsing polychondritis, and the published work is a handful of reports covering a few people each. Not one of those studies tested a program against anything. That makes it too little to put a number on a page a patient reads, so this page tells you what reaches you through your treatment instead, along with what should stop a session. The answer is thinner than you wanted, and it's the true one.
Has anybody tested a training program?
No, and nothing published in this disease compares a program against anything at all. Reports on one or two people can't separate a training effect from the disease settling down on its own, which is what makes them unusable here. So there's no before and after figure to give you, and inventing a plausible one is the thing this site won't do. When a real study appears, this answer changes.
So should I exercise?
The reasons everybody has still apply, and one recommendation covers most people with this diagnosis on top of them. Anyone on a long corticosteroid course falls under the 2017 American College of Rheumatology guideline, which strongly advises weight-bearing and strength work. It advises calcium and vitamin D alongside that, plus stopping smoking and limiting alcohol. All of that reaches you through your treatment rather than through the disease, and your team can say how it fits you.
What should stop me?
Three things should stop you, which are new breathlessness, a change in your voice, and noisy breathing. Get any of them seen promptly, because one study of 295 patients found airway trouble in 70.5 percent of them. The voice box was the most common spot at 82.2 percent, 25.7 percent of those patients needed a hole made in the windpipe, and the main cause of death was the airway closing. Those figures are why this page reads as it does.
Is there a heart reason to exercise here?
There's a signal worth knowing about, from a study that matched 30 patients against 60 healthy people. High blood pressure appeared in 53.3 percent of the patients and 23.3 percent of the controls, at a P value of 0.008. Diabetes appeared in 16.7 percent against 3.3 percent, at 0.039. Thirty people is a small study and both figures should be held loosely, but both of those conditions 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 of how seriously airway involvement in this disease gets taken. A European reference network searched for guidelines in relapsing polychondritis, found no guideline among the 20 citations it turned up, and named eleven areas of unmet need instead. One of the eleven was surgery and anesthesia, because this disease reaches the windpipe. So tell any anesthetist or surgeon your diagnosis, because it may not be on file anywhere they can see.
Is there a program I should follow?
There isn't one, and 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, which is 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 to follow. That's the honest route, even though it asks more of you than a printed plan would.
Why is there so little research?
The disease is rare, so gathering enough people for a trial is genuinely hard, and the effort that does exist goes to diagnosis and treatment. One search turned up 20 citations in the whole literature, and not one of them 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 yet 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.