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Polymyositis & Dermatomyositis

Polymyositis is a rare autoimmune disease in which the immune system inflames the muscles closest to the trunk, causing weakness that can make stairs, chairs and combing your hair hard. It belongs to a family of inflammatory muscle diseases that includes dermatomyositis. Trouble swallowing or breathing needs prompt care. There is no cure, but treatment and exercise help many people.

Get help fast for these.

  • Severe trouble breathing — gasping, choking or unable to get words out: call 911 or go to the emergency room (NHS (opens in a new tab)). In myositis, inflamed and weak breathing muscles can make breathing hard (TMA (opens in a new tab)).
  • Chest pain or pressure, or a racing, pounding or skipping heartbeat that does not settle or comes with chest pain, shortness of breath or fainting: call 911 (NHS (opens in a new tab), NHS (opens in a new tab)). Myositis can inflame the heart muscle and cause irregular heartbeats, some of which can be fatal (TMA (opens in a new tab)).
  • New trouble swallowing, or coughing or choking when you eat or drink, or a wet, gurgly voice afterward: ask for an urgent appointment (NHS (opens in a new tab)). Food or fluid that goes “down the wrong pipe” can cause pneumonia (TMA (opens in a new tab)).
  • Severe muscle pain with weakness and dark red or brown (tea-colored) urine, or much less urine: these are classic signs of rhabdomyolysis, a rapid breakdown of muscle that can lead to kidney failure. TMA calls it a medical emergency needing hospital care; it is rare in severe, sudden-onset myositis (TMA (opens in a new tab)).
  • New or worsening shortness of breath or a dry cough: contact your doctor right away. These can signal lung inflammation, which usually progresses slowly but can turn into breathing distress quickly (TMA (opens in a new tab)). On methotrexate, a dry cough, fever or shortness of breath needs a call right away (MedlinePlus (opens in a new tab)).
  • Weakness that is getting worse fast: MBHA suggests being seen the same day, especially if swallowing, breathing or your urine is affected. With too little treatment, myositis can cause significant disability and even death (TMA (opens in a new tab)).
  • Fever, chills, sore throat, cough or other signs of infection while taking immune-suppressing medicine: call your doctor promptly. These medicines weaken the body’s response to infection, so a fever may be weak or delayed (TMA (opens in a new tab)).

What is polymyositis?

Polymyositis (PM) is one of the inflammatory myopathies, a group of rare diseases that cause long-lasting muscle inflammation and weakness, and sometimes pain, in children and adults. Most are autoimmune: the immune system attacks the body’s own muscle fibers and sometimes blood vessels, organs or joints (NINDS (opens in a new tab)). In polymyositis, white blood cells invade the muscle tissue, and the muscles closest to the trunk are hit hardest (Johns Hopkins Myositis Center (opens in a new tab)). The cause is not known; some scientists think people with a genetic tendency develop the disease after an exposure such as an infection, virus, toxin or sunlight (TMA (opens in a new tab)).

The four main long-term types are polymyositis, dermatomyositis, inclusion body myositis and necrotizing autoimmune myopathy (NINDS (opens in a new tab)). The NHS calls polymyositis and dermatomyositis the most common (NHS (opens in a new tab)), and this guide covers both, because their symptoms, tests and treatments overlap. We have a separate Dermatomyositis guide with more on the skin rash, juvenile myositis and calcium lumps.

Why your diagnosis may change over time

The Myositis Association (TMA) says polymyositis has become “controversial” and is now considered uncommon; doctors must first rule out look-alikes such as muscular dystrophies and necrotizing myopathies (TMA (opens in a new tab)). NORD likewise notes that polymyositis is diagnosed less often than it used to be, as more people are classified as having necrotizing myopathy or an overlap with another autoimmune disease (NORD (opens in a new tab)). One UK specialist-clinic review looked again at 37 people labeled with polymyositis: only 9 still fit the diagnosis (3.5% of the clinic’s 255 myositis patients), while the rest were reclassified, including as necrotizing myopathy and as myositis that overlaps with another connective-tissue disease. The authors recommend a complete antibody panel and careful reading of the biopsy (Rheumatology, 2021 (opens in a new tab)). If you were told you have polymyositis, it is reasonable to ask which type you have and which antibodies were tested.

Who gets it?

Symptoms

Related conditions you may hear about

  • Dermatomyositis (DM) combines muscle weakness with a distinctive rash and carries a higher cancer risk than polymyositis (TMA (opens in a new tab)). See our Dermatomyositis guide.
  • Necrotizing myopathy (IMNM) causes muscle-fiber death with less inflammation on biopsy; many people were once labeled as having polymyositis. Some cases are linked to anti-SRP or anti-HMGCR antibodies, and the latter can follow statin cholesterol medicines (TMA (opens in a new tab)).
  • Antisynthetase syndrome combines myositis with antibodies such as anti-Jo-1 and often with lung disease, arthritis, fever, Raynaud’s and mechanic’s hands; 20–25% of people diagnosed with dermatomyositis or polymyositis have these antibodies (TMA (opens in a new tab)).
  • Inclusion body myositis (IBM) behaves differently and is covered in its own section below.
  • Look-alikes include inherited and thyroid-related weakness (TMA (opens in a new tab)); see our Muscular Dystrophy, Myasthenia Gravis and Thyroid guides. See our Polymyalgia guide.

Complications to know about

  • Lung disease. Apart from inclusion body myositis, interstitial lung disease (inflammation and scarring of lung tissue) is the most common and serious complication; researchers estimate 30–40% of people with myositis have some lung disease. It can appear before the muscle symptoms, and can be severe even when the muscles seem mild (TMA (opens in a new tab)).
  • Swallowing. About 36% of people with myositis can have dysphagia, usually from weak throat muscles; poor intake can lead to dehydration and weight loss (TMA (opens in a new tab)).
  • Heart. Heart-muscle inflammation can lead to cardiomyopathy, irregular heartbeats and heart failure, and TMA advises regular heart checks for everyone with myositis (TMA (opens in a new tab)). NORD describes heart-muscle inflammation as rare in polymyositis, though ECG irregularities have been reported (NORD (opens in a new tab)). See our Heart guide.
  • Infection from the medicines that calm the immune system (TMA (opens in a new tab)).

Cancer screening

Myositis does not cause cancer, but more people with myositis than expected develop it, mostly within a year or two of diagnosis. Polymyositis is associated with cancer about half as often as dermatomyositis; the cancers most linked to it are non-Hodgkin lymphoma, lung and bladder (TMA (opens in a new tab)). A 2023 international guideline says adult-onset myositis is linked with increased cancer risk in the three years before and after it begins; it sorts each person into standard, moderate or high risk and recommends a “basic” or “enhanced” screening panel, with endoscopy or PET-CT scanning for some (IMACS guideline, 2023 (opens in a new tab)). A review of 69 studies found older age, male sex, dermatomyositis, trouble swallowing and anti-TIF1-gamma antibodies increased risk, while polymyositis, lung disease and anti-Jo-1 antibodies were linked to lower risk; CT scans appeared useful, though screening evidence is limited (Rheumatology, 2021 (opens in a new tab)). TMA recommends close follow-up for at least five years, after which cancer rates match the general population (TMA (opens in a new tab)). Ask your doctor which plan fits you, and see our Cancer guide.

How it’s diagnosed

There is usually no single test. Because these diseases are rare and look like other disorders, diagnosis rests on symptoms, exam, tests and ruling out look-alikes (TMA (opens in a new tab)). The average person visits about five doctors over three and a half years before getting an accurate diagnosis (TMA (opens in a new tab)), so seeing a specialist helps (TMA (opens in a new tab)). The NHS says a GP will do a blood test and refer you to a specialist (NHS (opens in a new tab)). Common tests:

  • Blood tests. Creatine kinase (CK) and aldolase leak from damaged muscle and are often raised; CK can be very high, but normal levels do not completely rule out muscle inflammation, and levels may not track how you feel. A positive ANA shows autoimmunity but not which disease; a negative one does not rule out myositis (TMA (opens in a new tab)).
  • Myositis antibodies. A special panel can help define the subtype and predict complications; for example, anti-Jo-1 points to antisynthetase syndrome and lung disease, and anti-SRP and anti-HMGCR to necrotizing myopathy (TMA (opens in a new tab)).
  • EMG and MRI. A thin needle records the muscle’s electrical activity to tell muscle disease from nerve disease, and MRI shows inflammation and helps pick the best muscle to biopsy (TMA (opens in a new tab)).
  • Muscle biopsy is one of the best ways to confirm myositis and tell it apart from other muscle diseases. It is usually done under local anesthetic, and you may be sore for up to a week (TMA (opens in a new tab)).
  • Organ checks. Chest X-ray, CT and breathing tests for the lungs (TMA (opens in a new tab)); an electrocardiogram (ECG) and echocardiogram for the heart (TMA (opens in a new tab)); swallowing studies where needed (TMA (opens in a new tab)); and cancer screening, as above.

Tell your doctor about all your medicines, because muscle injury from medications is one of the other causes of weakness (TMA (opens in a new tab)). Exercise can also raise CK, so mention a regular exercise program before blood work (TMA (opens in a new tab)).

What to expect over time

There is no cure (NHS (opens in a new tab), TMA (opens in a new tab)). The NHS says myositis slowly worsens over time, but that medicines and exercise can help (NHS (opens in a new tab)). NORD says polymyositis generally responds well to treatment; muscle enzymes return to normal in most people within 4 to 8 weeks, followed by better strength, though about 30% are left with some weakness and many need long-term treatment (NORD (opens in a new tab)). TMA reports that more than 95% of people with dermatomyositis, polymyositis or necrotizing myopathy are alive more than five years after diagnosis; many have just one period of acute illness, and others struggle with symptoms for years. Of those who die early in the disease, the most frequent cause is infection from immune-suppressing treatment rather than myositis itself (TMA (opens in a new tab)). That is why infection prevention and lung, heart and swallowing checks matter so much.

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

Polymyositis & Dermatomyositis: six approaches compared
ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) Care led by a rheumatologist or neuromuscular neurologist (with lung, heart, skin and swallowing specialists as needed). Corticosteroids first; steroid-sparing immunosuppressants; IVIG or biologics such as rituximab for harder cases; physical, occupational and speech therapy; bone protection; cancer, lung and heart screening. Drug prices and specialist visits: cost estimate being researched. Medicare drug coverage caps out-of-pocket costs at $2,100 in 2026. Physical therapy: cost estimate being researched; Medicare Part B covers medically necessary outpatient therapy. No cure, but in most people muscle tests and strength improve within weeks to months and many need long-term treatment. Steroid side effects, infections and the lung, heart and cancer checks need ongoing attention.
Chiropractic No role in treating polymyositis, an autoimmune muscle disease. Not applicable — not a treatment. For other problems, about $55–$100 a follow-up visit and $90–$200 a first visit. Long-term steroids can thin the bones, so tell any chiropractor about your diagnosis and medicines; avoid forceful neck or spine manipulation unless your rheumatologist agrees.
Acupuncture Fine needles at specific points. We found little research on acupuncture for polymyositis or other myositis. About $90–$185 a private follow-up visit, up to about $230 for a first visit; community acupuncture about $50–$90. Unproven for myositis. Complications are uncommon with sterile needles, but immune-suppressing medicines raise infection risk, so tell your doctor first.
Herbal medicine No herb or supplement is proven to treat polymyositis. Calcium, vitamin D or folic acid may be advised by your doctor alongside certain medicines. Not applicable — not a recommended treatment. “Immune-boosting” herbs such as echinacea or cat’s claw may work against treatment, and red yeast rice contains a statin-like compound. Check with your doctor or pharmacist first.
Massage therapy Gentle massage for relaxation and stress relief only; it does not treat the inflammation. At one national chain, memberships run about $70–$90 a month for one 60-minute session; nonmember prices for 60 minutes were about $125–$160 at the locations checked. No myositis-specific research. Generally low-risk, but use light pressure if steroids have thinned your bones, and ask your doctor first.
MBHA Wellness Coach Following your physical therapist’s exercise plan, pacing fatigue, safer swallowing, steroid-friendly eating, infection and falls prevention, sleep and stress care, and support groups. Cost estimate being researched. TMA support groups are free to join. Supports — never replaces — your rheumatology team. Good habits help you get the most from treatment and spot problems early.

Approach 1 of 6

Conventional medicine (AMA)

Treatment aims to calm the inflammation, restore strength and protect the lungs, heart and swallowing, and some trial and error is often needed (TMA (opens in a new tab)). Most medicines are approved for other conditions and used “off label” in myositis (TMA (opens in a new tab)). We don’t list doses; your doctors will tailor any medicine to you.

Your care team

Care often involves a rheumatologist or neurologist who knows myositis (TMA (opens in a new tab)). If your lungs are affected, a lung specialist (pulmonologist) joins in, and if your heart is, a cardiologist, with the rheumatologist coordinating (Johns Hopkins (opens in a new tab), TMA (opens in a new tab), TMA (opens in a new tab)). Physiotherapy and speech and language therapy for swallowing or communication are often offered (NHS (opens in a new tab)), and NORD adds a dietitian if chewing and swallowing become difficult (NORD (opens in a new tab)). TMA offers tips for choosing a physical therapist and links to search tools (TMA (opens in a new tab)).

Medicines, by class

  • Corticosteroids (such as prednisone) are the usual first treatment. They work fairly quickly to control inflammation, ease pain and increase strength; the dose is lowered slowly over months, since tapering too fast can cause a flare, and some people need a low dose long term. Never stop or cut steroids on your own (TMA (opens in a new tab), MedlinePlus (opens in a new tab)).
  • Steroid-sparing immunosuppressants — methotrexate, azathioprine, mycophenolate, tacrolimus, cyclosporine and others — are used when steroids alone are not enough or to allow the steroid dose to come down. The choice depends on your symptoms; methotrexate is probably best avoided in people with interstitial lung disease, while cyclophosphamide and tacrolimus are used more often when the lungs are involved. All of them raise infection risk (TMA (opens in a new tab), NORD (opens in a new tab)). Azathioprine can also lower blood-cell counts and may raise the risk of certain cancers, especially skin cancer and lymphoma (MedlinePlus (opens in a new tab)), and methotrexate can cause serious lung damage (MedlinePlus (opens in a new tab)).
  • Intravenous immune globulin (IVIG), made from donated blood plasma and given by infusion, is usually kept for disease that has not responded to other treatment because it is very expensive (TMA (opens in a new tab)). NORD notes it has been particularly effective in necrotizing myopathy (NORD (opens in a new tab)).
  • Biologics and targeted medicines, such as rituximab, abatacept and tocilizumab, are considered for people who have not responded to standard treatment; rituximab and abatacept are not FDA-approved specifically for myositis (TMA (opens in a new tab)).
  • Acthar (a form of the hormone ACTH) is the only drug other than corticosteroids approved by the FDA for polymyositis and dermatomyositis (TMA (opens in a new tab)), though NORD says data on its effectiveness are limited (NORD (opens in a new tab)).

What the research says

High-quality trials are scarce. A 2025 Cochrane review of 16 trials (789 people) found that IVIG probably improves disability and strength in refractory disease, shown mainly in dermatomyositis (for polymyositis the authors called the data unreliable); for the other agents, including azathioprine and methotrexate, the trials were too few to say whether they help (Cochrane review, 2025 (opens in a new tab)). A companion 2025 review of 16 trials (830 people) found the evidence for rituximab, abatacept and complement inhibitors largely uncertain (Cochrane review, 2025 (opens in a new tab)). In a trial that included 76 adults with polymyositis, early and late rituximab did not differ in time to improvement, yet 83% of all participants met the improvement definition (Oddis et al., 2013 (opens in a new tab)). This does not mean the medicines fail; it means treatment is guided mostly by clinical experience, so an experienced specialist matters.

Exercise and therapy are part of treatment

It is natural to worry that exercise will harm weak, sore muscles, but TMA says all exercise studies in myositis confirm its safety, and exercise can reduce inflammation and fatigue and improve stamina and strength (TMA (opens in a new tab)). A 2022 review of 19 studies in dermatomyositis and polymyositis (298 patients) found exercise probably safe at all ages and stages, with moderate gains in strength and aerobic capacity and no flares reported (da Silva et al., 2022 (opens in a new tab)). NORD notes that regular exercise is often recommended even while the disease is active, and that heat therapy, passive range-of-motion exercises and splints can help prevent contractures (stiff, bent joints) (NORD (opens in a new tab)). Get your doctor’s clearance and work with a physical therapist who understands myositis; TMA also mentions occupational therapists (TMA (opens in a new tab)).

Protecting bones and the rest of your body on steroids

Long-term steroids can cause brittle bones, cataracts and glaucoma, stomach upset, weight gain, mood swings and diabetes. Doctors may check blood sugar, blood pressure, eye pressure and bone density and usually recommend vitamin D and calcium (TMA (opens in a new tab)). Before immune-suppressing treatment starts, testing for tuberculosis and for myositis antibodies is recommended, and live vaccines should be avoided (TMA (opens in a new tab)).

What it costs

  • IVIG is very expensive (TMA (opens in a new tab)). Other drugs and specialist visits: cost estimate being researched.
  • Help paying: with Medicare drug coverage, out-of-pocket costs for covered Part D drugs are capped at $2,100 in 2026 and $2,400 in 2027, and Extra Help is available for people with limited income (Medicare.gov (opens in a new tab)).
  • Physical therapy: cost estimate being researched. Medicare Part B covers medically necessary outpatient therapy, with no yearly limit on what Medicare pays; you generally pay 20% of the Medicare-approved amount after the Part B deductible (Medicare.gov (opens in a new tab)).
  • Scans, biopsies and screening tests: cost estimate being researched.

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic care has no role in treating polymyositis. The weakness comes from immune inflammation in the muscle (Johns Hopkins (opens in a new tab)), which is treated with medicines that calm the immune system (NHS (opens in a new tab)). TMA lists chiropractic and osteopathic manipulation among mind and body practices but says it is unaware of scientific studies of these practices in myositis (TMA (opens in a new tab)).

Safety if you see a chiropractor for something else

  • Long-term steroids can cause brittle bones (TMA (opens in a new tab)). Serious side effects of spinal manipulation are very rare, but the likelihood may be greater in people with underlying health problems, so tell the practitioner about your diagnosis and medicines (NCCIH (opens in a new tab)).
  • MBHA suggests avoiding high-velocity adjustments, especially of the neck, if you have osteoporosis or take long-term steroids, and getting your rheumatologist’s advice first.
  • For strength and movement, a physical therapist who understands myositis is the right guide (TMA (opens in a new tab)).

What it costs

For problems it is suited to, self-pay chiropractic visits run about $55–$100 for a follow-up and $90–$200 for a first appointment (The Pricer (opens in a new tab)).

Find a chiropractor in our directory

Approach 3 of 6

Acupuncture

We searched PubMed for studies of acupuncture in polymyositis, dermatomyositis and other myositis and found little research. TMA, which lists acupuncture among mind and body practices, also says it is unaware of scientific studies of these practices in myositis specifically and does not endorse them (TMA (opens in a new tab)). The NCCIH says acupuncture is most commonly used for pain and that research suggests it may help some pain conditions, such as back or neck pain (NCCIH (opens in a new tab)). That does not show it helps myositis, and it does not treat the immune inflammation behind it.

Safety

  • Relatively few complications have been reported, but nonsterile needles and improper technique have caused infections and other serious harm; the FDA requires needles to be sterile and single-use (NCCIH (opens in a new tab)).
  • Immune-suppressing medicines make infections more likely and harder to spot (TMA (opens in a new tab)). MBHA suggests telling your rheumatologist before you try acupuncture, choosing a licensed practitioner, and reporting any redness, swelling, warmth or fever at a needle site right away.
  • Never skip or reduce prescribed medicines because of acupuncture (TMA (opens in a new tab)).

What it costs

Private follow-up visits run about $90–$185 and first visits up to about $230; community acupuncture is about $50–$90 a visit (The Pricer (opens in a new tab)).

Find an acupuncturist in our directory

Approach 4 of 6

Herbal medicine

We found no herb or supplement proven to treat polymyositis. A 2026 systematic review of nutrition studies in muscle diseases found the evidence limited, especially for inflammatory myopathies; in polymyositis and dermatomyositis, creatine combined with exercise improved high-intensity physical performance over six months (Rheumatology, 2026 (opens in a new tab)). NORD lists coenzyme Q10, creatine and fish oil as supplements some patients find useful, but none is approved for polymyositis (NORD (opens in a new tab)). Talk with your doctor before trying any of them.

Supplements your doctor may recommend

Some supplements support treatment rather than treat the disease: calcium and vitamin D for people on steroids, and folic acid for people taking methotrexate, since methotrexate interferes with folate. TMA also encourages an anti-inflammatory, Mediterranean-style diet with more omega-3 fats (TMA (opens in a new tab)).

Herbal medicine research

A Taiwanese registry study found lower death rates among people with polymyositis or dermatomyositis who received herbal medicine along with standard drugs. It was retrospective, so it could not show the herbs caused the difference, and the authors called for more research (Journal of Ethnopharmacology, 2019 (opens in a new tab)). It is not a reason to start an herbal product on your own.

Be careful

  • “Immune boosters.” Echinacea might interact with immunosuppressants (NCCIH (opens in a new tab)). Cat’s claw might make the immune system more active and worsen autoimmune disease, and Asian ginseng may worsen autoimmune disorders (NCCIH (opens in a new tab)).
  • Red yeast rice. It can contain a compound identical to the statin lovastatin, in amounts that vary widely between products (NCCIH (opens in a new tab)). TMA notes that statins, and dietary sources such as red yeast rice, can lead to anti-HMGCR antibodies, which are linked to necrotizing myopathy (TMA (opens in a new tab)). If you have unexplained muscle weakness, tell your doctor about every cholesterol medicine and supplement you take.
  • What is on a supplement label may not be what is in the bottle; the FDA has found hidden prescription drugs in some products (NCCIH (opens in a new tab)).

Before you take any supplement, show it to your rheumatologist or pharmacist — supplements can interact with medicines (NCCIH (opens in a new tab)). Always take prescribed medicines as directed and never stop or change them without your doctor (TMA (opens in a new tab)). We don’t list doses here.

Approach 5 of 6

Massage therapy

We found no research on massage for polymyositis, and it does not treat the inflammation. TMA lists massage among approaches that may ease stress, which matters because stress and poor sleep can trigger flares, while noting it knows of no myositis-specific studies (TMA (opens in a new tab)).

The risk of harm from massage appears low, but rare serious problems, including blood clots, nerve injury and bone fractures, have been reported, sometimes with vigorous or deep-tissue work or in people at higher risk of injury (NCCIH (opens in a new tab)). As a precaution, MBHA suggests:

  • Ask your doctor first, especially during a flare or if steroids have weakened your bones (TMA (opens in a new tab)).
  • Choose light, gentle pressure and avoid deep-tissue work, and skip any areas of rash or broken skin.

What it costs

Prices vary by therapist and area. At one national chain, memberships run about $70–$90 a month and include one 60-minute session; nonmember prices for a 60-minute massage were about $125–$160 at the locations checked (The Pricer (opens in a new tab)).

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

An MBHA Wellness Coach can help you turn your care team’s advice into daily habits — alongside, never instead of, your medical care. TMA notes that many people find healthy habits such as eating well, exercising, reducing stress and sleeping enough help their disease (TMA (opens in a new tab)).

Exercise, guided by a physical therapist

Get your doctor’s clearance, then work with a therapist who understands myositis. Walking at your own pace is always safe, and a flare may call for sticking to everyday movement. Start gently and build up slowly; if you feel overly tired or sore the next day, you have done too much. On off days, keep a lighter routine rather than stopping. TMA suggests stopping any exercise if you have severe pain, uncontrolled high blood pressure or an irregular heartbeat and getting care for those symptoms (TMA (opens in a new tab)). A coach can help you stick with the plan.

Safer swallowing

If you cough or choke when eating, or your voice sounds wet after drinking, ask for an evaluation by a speech-language pathologist. Simple strategies include choosing softer food textures, alternating liquids and solids, and tucking the chin when you swallow (TMA (opens in a new tab)). Mention unplanned weight loss or dehydration to your team (NHS (opens in a new tab)).

Eating well on steroids

Prednisone increases appetite and can raise blood pressure and blood sugar. TMA suggests frequent small meals, limiting high-calorie and sugary foods and salt, taking the medicine with food, and eating calcium-rich foods (TMA (opens in a new tab)).

Preventing infections

Wash your hands often, clean cuts promptly, avoid sick people and raw or undercooked eggs and meat, and ask your doctor about vaccines: live vaccines should be avoided on immune-suppressing treatment, but inactivated ones such as the flu shot are fine (TMA (opens in a new tab)).

Falls, skin, sleep and stress

TMA recommends being safety-conscious to prevent falls (TMA (opens in a new tab)). If you have dermatomyositis, sun can trigger flares; TMA members recommend high-SPF sunscreen all year, hats, long sleeves and avoiding midday sun (TMA (opens in a new tab)). Stress and poor sleep can cause flares, so relaxation, gentle yoga or meditation, and good sleep habits are worth building in, though prednisone can make sleep harder (TMA (opens in a new tab)).

Support groups

The Myositis Association offers free support groups for patients and care partners, regional groups and one-on-one peer support (TMA (opens in a new tab)).

Another approach

Inclusion body myositis (IBM) is different

IBM is the most common acquired muscle disease in people over 45, is more common in men, and is rarely seen before age 45 (TMA (opens in a new tab)). Weakness comes on slowly over months or years; falling or tripping is often the first sign, and it can affect only one side. It may start in the wrists and fingers, making pinching, buttoning or gripping hard (NINDS (opens in a new tab)). The thigh muscles and forearms often shrink visibly (TMA (opens in a new tab)), and trouble swallowing occurs in about half of cases (NINDS (opens in a new tab)).

Experts still debate whether IBM is truly an inflammatory disease. Its muscle biopsy shows abnormal protein build-up and tiny empty spaces called vacuoles, which may be why anti-inflammatory drugs do not work well (TMA (opens in a new tab)). NINDS says there is no cure or standard treatment, IBM is generally unresponsive to corticosteroids and immunosuppressive drugs, and physical therapy may help maintain mobility (NINDS (opens in a new tab)). A 2015 Cochrane review of 10 trials found methotrexate and interferon beta-1a had no effect on progression and could not draw conclusions about IVIG (Cochrane review, 2015 (opens in a new tab)), and a 2025 update of drug trials found treatments not effective for most outcomes (RMD Open, 2025 (opens in a new tab)). TMA says exercise is currently the only treatment recommendation for IBM (TMA (opens in a new tab)). Hereditary inclusion body myopathies are genetic and not inflammatory (TMA (opens in a new tab)).

Life expectancy is usually unchanged; the bigger risks are preventable complications such as aspiration pneumonia from poor swallowing and injuries from falls (TMA (opens in a new tab)).

Another approach

Beware of cure claims

No treatment cures myositis (TMA (opens in a new tab)). TMA specifically cautions against commercial “stem cell” clinics that claim to cure it: its Medical Advisory Board says there is very little scientific evidence that these treatments work, that they carry risks, including unknown side effects, possible worsening of inflammation, and promotion of tumor and cancer growth, and that they can cost many thousands of dollars and are not covered by insurance (TMA (opens in a new tab)). Likewise, TMA suggests being wary of any therapist who claims to cure you or brushes off myositis as trivial (TMA (opens in a new tab)).

Another approach

Questions to bring to your appointment

Member stories

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Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

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