Dr. Latika Gupta, Consultant Rheumatologist and Senior Lecturer at the Royal Wolverhampton Hospitals NHS Trust and University of Manchester in UK addresses questions on Myositis or Idiopathic Inflammatory Myopathy, an often-underdiagnosed autoimmune condition.
What is Idiopathic Inflammatory Myopathy (IIM) or myositis?
Myositis is a group of rare conditions where the immune system, which normally protects us from infections, mistakenly attacks healthy muscle tissue. This causes inflammation in the muscles, leading to weakness and other symptoms. The word "idiopathic" means we don't always know exactly what triggers the condition, while "inflammatory" refers to the body's immune response that causes the muscle damage.
What is the incidence of IIM in India?
While myositis can affect people worldwide, we don't have exact numbers for India. It's considered a rare condition, affecting roughly 2-8 people per 100,000. However, it may be underdiagnosed, especially in areas with limited access to specialist care.
What causes this group of rare conditions?
The exact cause isn't fully understood, but we believe it's a combination of factors:
- Genetic factors that may make some people more susceptible
- Environmental triggers like certain infections, medications, or UV exposure
- Changes in the immune system
Remember, having myositis isn't anyone's fault - it's not caused by anything you did or didn't do.
What are the symptoms and signs? How do they manifest and over what duration of time?
Common symptoms of myositis include:
- Gradually developing muscle weakness, typically in the shoulders, hips, and thighs
- Difficulty with everyday tasks like climbing stairs, getting up from a chair, or lifting arms above the head
- Muscle pain or tenderness
- Fatigue
- Some people may develop skin rashes (especially in dermatomyositis)
- Difficulty swallowing in some cases
Symptoms usually develop gradually over weeks to months, though the pattern can vary from person to person.
When should I see a doctor? Do the symptoms occur together?
You should see a doctor if you notice:
- Progressive muscle weakness, especially in your legs or arms
- Difficulty with daily activities that you could previously do easily
- Unexplained falling
- Trouble swallowing
- Persistent muscle pain
- Unusual rashes
Not everyone experiences all symptoms at once, and they may appear gradually. It's better to seek medical attention early rather than waiting for multiple symptoms to appear.
Can myositis occur at any age?
Yes, myositis can affect people of any age. While some types are more common in certain age groups (for example, juvenile myositis in children, or inclusion body myositis in older adults), it can develop at any time in life.
Is it a genetic condition? Will I pass it on to my children?
While myositis isn't directly inherited like some genetic conditions, there may be a genetic component that makes some people more susceptible. However, having myositis doesn't mean your children will develop it. If you're planning a family, feel free to discuss any concerns with your doctor.
Since Myositis is a group of conditions, what are the different types?
The main types include:
- Dermatomyositis (affects muscles and skin)
- Polymyositis (primarily affects muscles)
- Inclusion Body Myositis (usually affects older adults)
- Immune-mediated Necrotizing Myopathy (can be severe but treatable)
- Anti-synthetase Syndrome (may affect muscles, lungs, and joints)
Each type has its own characteristics and treatment approach.
Which muscles tend to be more affected?
Myositis typically affects:
- Proximal muscles (those closest to the body's center)
- Shoulders and upper arms
- Hips and thighs
- Neck muscles
- This pattern of weakness can make certain activities, like reaching up or standing from a seated position, particularly challenging.
How is myositis diagnosed? What tests are done?
Diagnosis usually involves several steps:
- Physical examination
- Blood tests to check for muscle enzymes and specific antibodies
- MRI scans to look at muscle inflammation
- EMG (electromyography) to test muscle electrical activity
- Sometimes, a muscle biopsy
- Don't worry - your doctor will guide you through which tests are needed in your case.
Do I need to see a specialist for diagnosis/care? What kind?
Yes, myositis is best managed by a team of specialists, typically led by a rheumatologist (an expert in autoimmune conditions). Depending on your symptoms, you might also see:
- Neurologists
- Dermatologists (for skin symptoms)
- Physiotherapists
- Occupational therapists This team approach ensures you receive comprehensive care for all aspects of your condition.
What does treatment entail?
Treatment is personalized for each patient and may include:
- Medications to control inflammation (such as corticosteroids and immunosuppressive drugs)
- Regular monitoring to adjust treatment as needed
- Physical therapy to maintain muscle strength
- Occupational therapy to help with daily activities Remember, treatment goals are to control inflammation, prevent muscle damage, and help you maintain your quality of life.
What is the role of exercise and physiotherapy?
Exercise and physiotherapy are crucial parts of myositis management:
- Helps maintain muscle strength and flexibility
- Prevents muscle wasting
- Improves daily function and independence
- Reduces fatigue
- Your physiotherapist will design a safe exercise program tailored to your needs and abilities. Don't worry about pushing too hard - they'll guide you on what's appropriate.
What lifestyle alterations need to be made to better manage this?
Helpful lifestyle changes include:
- Maintaining regular gentle exercise as advised by your healthcare team
- Getting adequate rest when needed
- Avoiding overexertion
- Using assistive devices when helpful
- Maintaining a healthy diet
- Protecting your skin from sun exposure (especially in dermatomyositis) Remember, small changes can make a big difference in managing your symptoms.
Any tips on diet and food habits?
A balanced, healthy diet is important when living with myositis for several reasons. It helps maintain a healthy weight which reduces strain on your muscles, and good nutrition can also help reduce inflammation in your body and support your immune system. While there haven't been many studies specifically looking at diet in myositis, this is changing. An international research group called COVAD is currently exploring this topic through their diet survey, which you can participate in to help advance our understanding. Here is the link for the survey in English.
Here are some tips on what a healthy diet constitutes:
- Eat a balanced diet rich in nuts, vegetables, and whole grains
- Get adequate protein to support muscle health
- Reduce carbohydrate, sugars and salt intake
- Stay well-hydrated
- Consider calcium and vitamin D supplements (discuss with your doctor)
- Maintain a healthy weight
- Your doctor or a dietitian can provide personalized dietary advice.
If the disease has progressed, what complications are seen? Are these life threatening?
Possible complications can include:
- Difficulty swallowing
- Breathing problems
- Increased risk of falls
- Joint problems
- While these complications can be serious, early recognition and proper management can help prevent or minimize them. Many people with myositis lead full, active lives with proper care.
1 in 4 adults with IIM develop cancer. What is the relation to cancer? Which group of patients must be screened for cancer?
The relationship between myositis and cancer is complex:
- Some forms of inflammatory myositis, particularly dermatomyositis, have a higher association with cancer
- Cancer screening is especially important in the first few years after diagnosis- for some but not all types of myositis
- Regular check-ups and age-appropriate cancer screening are important
- Your doctor will guide you on appropriate cancer screening based on your specific type of myositis and other risk factors.
Early detection is key - please discuss with your doctor which specific screenings are right for you based on your age, gender, and personal risk factors.
Is there a patient support group for Myositis?
Yes! Support groups can be incredibly helpful. They offer:
- Connection with others who understand your experience
- Practical tips for daily living
- Emotional support
- Updated information about research and treatments
You can find support through:
- The Myositis Association (TMA)
- Online support communities such as PatientsEngage. Join the Autoimmune or Care for Rare Community
- Local support groups
- Social media groups dedicated to myositis
Dr Gupta (MD, MRCP, DM) is a Consultant Rheumatologist and Senior Lecturer at the Royal Wolverhampton Hospitals NHS Trust and University of Manchester in UK. Trained in clinical and translational sciences, Dr Gupta has a keen interest in cohort building, working with big datasets, academic writing and mentorship, inflammatory myopathies, equity and digital health.
Dr Gupta leads the EULAR study group for social media in rheumatology, the COVAD study group for holistic healthcare and patient voice, and the CHANGE group for global equity research. Dr Gupta's current work focuses on attaining consensus in biosample processing & harmonised biobanking for rare diseases, EULAR guidelines on vaccination in rheumatic conditions and IMACS-CARRA-SHARE consensus guidelines for the management of juvenile dermatomyositis.
Dr Gupta is an editorial team member for Rheumatology, Journal of Clinical Rheumatology and IJRD. Dr Gupta loves medical teaching and works closely with the next generation of interdisciplinary specialists and patient research partners to foster collaborative academic growth and learning.
