Myositis Information for Health Professionals

Your role is critical

With the current average time to diagnosis of five years, GPs and other health professionals play a critical role in diagnosing this rare and progressive muscle disease.
The earlier a patient is diagnosed, the better their potential health outcomes will be.

May is Myositis Month

Understanding Myositis. Thank you to Civic Solutions Inc and students from Griffith Film School for helping to create this video.

About Myositis

Treating muscle weakness? Some things are not just part of getting older. It could be Myositis – a group of rare autoimmune conditions where healthy muscle tissue is destroyed instead of building new muscle tissue.

Myositis is sometimes misdiagnosed as motor neurone disease (MND). While it shares many of the severe impacts of MND, it has a relatively low public profile. That’s why we are dedicated to raising awareness about Myositis to help people get diagnosed earlier, which could significantly improve their quality of life.

Physician’s Guide to Inflammatory Myopathies

Detailed information for diagnosing and treating Myositis is available in this Physician’s Guide to Inflammatory Myopathies. The Myositis Association (USA) has authorised the publication of the guide.

Myositis Specific Autoantibodies (MSAs)

Medical Practitioners are encouraged to order a MYOSITIS PANEL BLOOD TEST. Researchers continue to identify particular autoantibodies as biomarkers for Myositis diseases. These autoantibodies are rarely found in other diseases, so their presence in the patient’s blood can confirm the diagnosis of:

  • Dermatomyositis
  • Polymyositis
  • Immune-Mediated Necrotizing Myopathies
  • Inclusion Body Myositis.

MSAs and clinical features associated with them

taken from The Myositis Association (USA):

AutoantibodiesClinical features
Anti-ARS (antisynthetase)AS syndrome with moderate-to-serve muscle weakness with high muscle enzyme levels, RP, mechanic’s hands, fever, arthritis, and ILD
Anti-Jo-1Chronic continuous disease course, with clinical symptoms for >two years after diagnosis; mean five-year survival rate = 65%, usually due to ILD; AS syndrome features
Anti-PL-7AS syndrome with higher frequency of ILD
Anti-PL-12AS syndrome with higher frequency of ILD
Anti-EJDermatomyositis and ILD
Anti-OJMyositis and ILD
Anti-KSILD with less myositis
Anti-ZoMyositis and ILD
Anti-SRPAcute onset NM with severe weakness, high CK, cardiac involvement; refractory to treatment
Anti-Mi-2Adult DM and JDM with hallmark cutaneous disease, milder myositis with good response to treatment
Anti-TIF1-y (anti-p155/140)CAM in adult DM; severe cutaneous disease in adult DM and JDM
Anti-SAEAdult DM; may present with CADM first
Anti-MDA5 (anti-CADM140)CADM; rapidly progressive ILD
Anti-NXP-2Predominantly JDM with subcutaneous edema, calcinosis, and servere muscle disease with contractures; increased risk of cancer in some adult DM studies
Anti-HMGCRNM; associated with statin use in adults; severe proximal muscle weakness; partially responsive to immunosuppressive medications; better response to IVIg
Anti-cN-1A (Mup44, NT5c1A)IBM; higher mortality risk

ARS=aminoacyl-tRNA synthetase; AS syndrome=antisynthetase syndrome; RP=Raynaud’s phenomenon; ILD=interstital lung disease; SRP=signal recognition particle; T1F1-y=transcriptional intermediary factory 1-gamma; NXP-2=nuclear matrix protein-2; SAE=small-ubiquitin-like modifier activating enzyme; MDA5=melanoma-differentiation associated gene 5; CAM=cancer-associated myositis; CADM-clinically amyopathic DM; NA-not applicable/no data.

Diagnostic Criteria

The EULAR/ACR classification criteria for idiopathic inflammatory myopathies (IIM) were developed in 2017.

As part of this international collaboration, a web-based calculator was developed to estimate the probability of myositis diagnosis and subtype. 

Myositis Exercise Safety Information for Nurses and Allied Health Professionals

When working with a Myositis patient, it is important to:

  • listen to your patient
  • never leave patients unattended
  • never assume patients can squat, kneel, climb, step up or support their weight
  • use appropriate mobility support equipment to avoid falls.

Please be aware that Myositis patients recovering from a fall, fracture or surgery are especially weak and at risk of a serious fall.

What to expect when treating a Myositis patient

All myositis patients have:

  • muscle weakness
  • impaired balance
  • fatigue
  • lack of endurance
  • plus individual symptoms related to the Myositis subtype that they have.

Advanced Inclusion Body Myositis (IBM) <Link to page membership page> patients are at serious risk of injury if not supported at all times. They tend to have very limited muscles in:

  • forearms
  • fingers
  • shoulders
  • thighs
  • glutes.

Many IBM patients need powered chairs with lift, tilt and recline functions and have specific bedroom and bathroom needs such as very high over chairs, hoists, lift seats, bidets, electronic commodes, specialised transfer devices, hospital beds.

Exercise Prescriptions

Recent studies suggest that exercise is bene­ficial provided it is adapted to the patient’s individual:

  • disease activity
  • level of pain
  • degree of fatigue
  • drug dose

Exercises should be prescribed for each patient and commenced slowly:

  • at a very low level
  • without any resistance
  • with few repetitions
  • for short periods
  • adapted for patient’s balance and strength
  • under close supervision of a trained therapist.

Focus on functional exercises for basic daily living needs:

  • shoulder mobility e.g. for reaching
  • triceps e.g. for getting off the toilet and out of chairs
  • quads/knee extensors e.g. for stability and walking
  • gluteal/hip fl­exor and extensors e.g. for standing up, walking, rolling over in bed
  • neck ­flexors and trunk e.g. for raising the head off a pillow
  • grip strength e.g. for holding cutlery and mobility aids, dressing.

Patients with myositis may find hydrotherapy beneficial. Not having to worry about falling over often leads to greater peace of mind and confidence resulting in more effective exercise.

This exercise safety information is also available as a pdf version: Myositis Exercise Safety Information for Physios, OTs and Nurses.

More information about exercise and Myositis is available in the Resource Hub

Patient Support

We are a registered charity who are here to support and advocate for your patients, whether they are living with Myositis or they are a carer, family member or friend.

Find out more about the support services we offer. This information is also available in a pdf flyer. Download here.

Please encourage your patients to visit or more information about our work and support services or contact us on 0421 314 138 or



Raising myositis awareness PDF

We have a panel of medical and allied health professionals who have experience in advising people living with Myositis. If you are interested in learning more, please contact us