Myositis is a group of rare conditions, the main symptoms being weak, aching or painful muscles which usually worsens over time. Myositis is usually caused by a problem with your immune system which makes a mistake causing the immune system to attack muscles (a so-called autoimmune disease). Prof Hanna is a myositis specialist and works with patients to find the most suitable treatment and care.
Types of myositis
There are different types of myositis, but the three most common are:
Polymyositis – this affects many different muscles but in particular the shoulders, hip and thigh muscles. It is more common in women and people aged between 30 and 60.
Dermatomyositis – this also affects several muscles, but additionally causes a rash. It is more common in women and in some cases children (known as juvenile dermatomyositis).
Inclusion Body Myositis (IBM) – this causes weakness in the thigh, forearm and muscles below the knee. It can also cause dysphagia (problems with swallowing) and is most common in men and people over 50.
Polymyositis affects many different muscles, in particular around the neck, shoulders, back, hips and thighs. The symptoms can include:
- Muscle weakness
- Aching or painful muscles
- Feeling very tired
- Difficulty sitting or standing after a fall
- Problems swallowing or holding your head up
The level of muscle weakness can vary from time to time, but will progressively get worse if you do not seek treatment.
Dermatomyositis symptoms are similar to polymyositis, but it also causes a very distinctive rash. Prior to the muscle weakness symptoms, a rash will appear, usually on the face and knuckles. It may also appear on the upper chest, back, elbows and knees. The rash can be painful and itchy and may also cause lumps of tissue to develop under the skin.
Treatment for myositis
For all types of myositis, exercise is an important part of treatment. It can help reduce swelling, build up your muscle strength and give you energy.
Physiotherapy and exercise are especially important for IBM (inclusion body myositis), as these are the only treatments. It is important to speak to a GP and physio before starting any exercise, as they will develop an exercise plan that is suitable for you.
Whilst it is important to continue gentle movement of your muscles and joints, you should be very careful when having severe symptoms, or a ‘flare up’, when you will experience more severe muscle weakness and pain.
Medicine wise, steroids are the main treatment for polymyositis and dermatomyositis, and will help to reduce the swelling and muscle pain. Steroids can be administered as a tablet, by injection, or directly into the vein via a drip. You will usually begin with a high dose which is reduced over time. High steroid doses over a long period of time can cause side effects, such as:
- Weight gain
- High blood pressure
Disease-modifying anti-rheumatic drugs
If you have a flare up of muscle swelling, you may be prescribed a disease-modifying anti-rheumatic drug (DMARD), which suppresses your immune system and helps to reduce the swelling. These drugs take some time to work but will help to reduce your need for steroids in the long term.
Some patients need immunoglobin therapy to stop their immune system from attacking the muscles. This treatment involves injecting healthy antibodies (immunoglobins) from donated blood. The procedure is carried out in hospital, usually into the vein via a drip. You many need more that 1 treatment.
Biologic therapies such as rituximab, are widely used to treat conditions such as arthritis and can also help to manage the symptoms of myositis by reducing swelling.
Most people with myositis respond to a combination of careful exercise, steroid and immunosuppressive therapy. Steroids, in low doses, can be required for a number of years, along with medicines to suppress the immune system.
Appointments and more information
Prof Hanna is an internationally recognised expert in muscle wasting neurological conditions and have published over 400 research papers on neurological subjects including neuromuscular diseases, mitochondrial diseases, channelopathies, inclusion body myositis, myasthenia gravis and motor neurone disease.
If you are concerned about your symptoms, arrange an appointment to discuss your myositis diagnosis and treatment, please contact Prof Hanna. Appointments can be arranged via the NHS or privately.
A letter of referral is required from your GP or NHS Practitioner. Referrals should be sent to my NHS Office.
NHS Office Address: Centre for Neuromuscular Diseases The National Hospital for Neurology and Neurosurgery Queen Square London WC1N 3BG NHS Office Enquiries Tel: 020 3448 8014/8251 Fax: 020 3448 3633
A letter of referral may be required for private patients who have Private Medical Insurance (PMI). Self-paying patients can self-refer.
Private Office Address: The Private Consulting Rooms The National Hospital for Neurology and Neurosurgery Queen Square London WC1N 3BG Private Office Appointments and Enquiries Tel: 020 3448 8935 Fax: 020 3448 8816
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