Myositis - A Rare Skin Disease and Treatment

What is Myositis?

Myositis is the name for a group of rare conditions that can cause muscles to become weak, tired and painful. The word Myositis simply means inflammation in muscles. If something is inflamed, it may be swollen.

Having myositis can also lead to other parts of the body being affected, such as the skin, lungs or heart. Myositis can affect people of any age, including children, but it is most commonly diagnosed in individuals between the ages of 30 and 60.

Sometimes myositis can affect the muscles that carry out tasks such as breathing and swallowing. The main muscles to be affected are around the shoulders, hips and thighs.

There are several types of Myositis.

There are many type of Myositis, but the two most common types are Polymyositis and Dermatomyositis. ‘Poly’ means many.

Polymyositis, Dermatomyositis, as well as other types of Myositis, are autoimmune conditions. The immune system is the body’s natural self-defence system. When healthy, it protects us from infection, injury and illness.

Polymyositis means that many muscles are affected by inflammation. This type doesn’t often affect other parts of the body much.

Dermatomyositis causes similar symptoms in muscles, but there is also a skin rash. ‘Derma’ means skin.

What is Autoimmune Disease?

People who have autoimmune conditions, the immune system gets confused and mistakenly attacks the body’s own healthy tissues.

For example, when we have a cut, the body sends fluid to the affected area so that white blood cells can fight off any infection. 

But If someone has an autoimmune condition the body can create inflammation when there is no infection to fight. 

The unnecessary inflammation can then cause problems.

Symptoms of polymyositis

Polymyositis affects many different muscles, particularly around the neck, shoulders, back, hips and thighs.

Symptoms of Polymyositis include:
  • Muscle weakness
  • Aching or painful muscles and feeling very tired
  • Finding it hard to sit up, or stand after a fall
  • Swallowing problems, or finding it hard to hold your head up
  • Feeling unhappy or depressed

You may find it difficult to get up from a chair, climb stairs, lift objects, and comb your hair. The muscle weakness can become so severe that even picking up a cup of tea can be difficult.

The muscle weakness may change from week to week or month to month, although it tends to steadily get worse if you do not get treatment.

Symptoms of Dermatomyositis

The symptoms of Dermatomyositis are similar to those of Polymyositis, but there's also a distinctive rash.

Before the muscle symptoms start, a red, purple or dark rash often appears. It is usually on the face (eyelids, nose and cheeks), and hands (knuckles). 

It can also sometimes be seen on the back, upper chest, elbows and knees.The rash can be itchy or painful, and you may also get hard lumps of tissue under your skin.

How is Myositis diagnosed?

A Doctor may suspect Myositis based on a person’s symptoms of muscle weakness or other evidence of Myositis. 

Tests for Myositis include:

MRI scan
A scanner using a high-powered magnet and a computer creates images of the muscles. An MRI scan can help identify areas of myositis and changes in the muscles over time.

Blood tests 
High levels of muscle enzymes, such as creatine kinase, may mean there is muscle inflammation. Other blood tests check for abnormal antibodies that may identify an autoimmune condition.

By inserting needle electrodes into muscles, a doctor can test the response of muscles to electrical nerve signals. EMG can identify muscles that are weak or damaged by myositis.

Muscle Biopsy 
This is the most accurate test for diagnosing Myositis. A doctor identifies a weak muscle, makes a small incision, and removes a small sample of muscle tissue for testing. Muscle biopsy leads to a final diagnosis in most people with Myositis.

There are many causes of muscle weakness and pain more common than myositis, and testing for myositis is not a straightforward process. For these reasons, the process of diagnosing Myositis can be long.


Treatment for Myositis typically involves a combination of medications and physical therapy.

Steroids - Steroids are the main type of medicine used to treat Polymyositis and Dermatomyositis. They help to quickly reduce swelling and ease muscle pain.

They can be given as a tablet or injection, or directly into a vein through a drip. You will usually be given a high dose to start with, which is reduced over time.

High doses of steroids taken over a long time can cause side effects. These include:
  • Weight gain
  • High blood pressure
  • Diabetes
  • Cataracts (cloudy patches in the lens of the eye)
  • Osteoporosis (weakened bones)

Immunoglobulin therapyVery rarely, you may need immunoglobulin therapy to stop your immune system attacking your muscles.

This involves having an injection of healthy antibodies (immunoglobulins) from donated blood.

Immunoglobulin therapy is given in hospital, usually directly into a vein through a drip.

Complications of Myositis

Some people with Myositis do not respond well to treatment and find the condition significantly affects their everyday activities and quality of life. But continuing to exercise usually helps improve muscle strength.

If you have severe myositis, you may develop breathing and swallowing problems. Speech and language therapy may be recommended if you're having problems swallowing or it's affecting your ability to communicate.

Biologic therapies

Biologic therapies, such as rituximab, can also help manage the symptoms of Myositis. They are widely used to treat conditions such as Rheumatoid Arthritis and Psoriatic Arthritis. 

They help to reduce swelling and tend to only be used for severe Myositis.

While there is no cure for Myositis, with appropriate treatment, most patients are able to manage their symptoms and maintain a good quality of life.

However, in severe cases, myositis can lead to disability, particularly if it affects the lungs or heart. Regular monitoring by a healthcare professional is important for patients with Myositis to ensure early detection of any potential complications.

Exercise and physiotherapy

Exercise is a very important part of treatment for all types of Myositis. It can help reduce swelling, give you more energy, and build up or restore your muscle strength.

Exercise and physiotherapy are particularly important if you have inclusion body myositis (IBM), as these are the only treatments for this type of myositis. IBM cannot be treated with medicines.

You should speak to your physiotherapist before starting a new exercise programme for myositis. They will help to make an exercise plan that is right for you.

You must be very careful about exercising if you have severe symptoms of myositis, such as severe muscle pain and weakness (a "flare up"). Most specialists do not recommend exercising during this period.

But, it's very important to maintain gentle movement of your muscles and joints, especially if myositis developed during childhood. This makes sure that your joints do not become stiff and end up in a fixed position.

How can I prevent Myositis?

There’s nothing you can do prevent Myositis. Because experts aren’t sure what causes it, there’s no way to know who’ll develop it or when you’ll first experience symptoms.


Myositis is a rare autoimmune condition that causes muscle inflammation and weakness. Early diagnosis and treatment are important to manage symptoms and prevent complications. If you or someone you know is experiencing muscle weakness or other symptoms of Myositis, it is important to seek medical attention promptly.

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