The symptoms of myasthenia gravis can sometimes have a specific trigger. Doing what you can to avoid your triggers may help.
Common triggers include:
- tiredness and exhaustion – getting plenty of rest and not overexerting yourself may help
- stress – read some tips to help reduce your stress levels
- infections – you may be advised to have an annual flu jab and the one-off pneumococcal vaccine, but get advice before having a "live" vaccine, such as the shingles vaccine (live vaccines contain viruses or bacteria that have been weakened)
- medicines – make sure your doctor is aware of your condition and get advice before taking anything on the list of medicines that can trigger myasthenia gravis symptoms
- surgery – make sure your surgeon is aware of your condition before having any operation
It's also a good idea to avoid activities that could be dangerous if you have sudden weakness, such as swimming alone. If you drive, you should tell the DVLA you have myasthenia gravis.
The first medicine used for myasthenia gravis is usually a tablet called pyridostigmine, which helps electrical signals travel between the nerves and muscles.
It can reduce muscle weakness, but the effect only lasts a few hours so you'll need to take it several times a day. For some people, this is the only medicine they need to control their symptoms.
Possible side effects include stomach cramps, diarrhoea, muscle twitching and feeling sick. Tell your doctor if you get any of these, as they may be able to prescribe other medicines to help with side effects.
These work by reducing the activity of your immune system (the body's natural defence against illness and infection), to stop it attacking the communication system between the nerves and muscles.
Prednisolone is usually started in hospital if you have problems with swallowing or breathing, or if your symptoms keep getting worse and you need treatment quickly.
You'll usually be advised to take the tablets every other day. Depending on how severe your symptoms are, you may need to take a high dose at first, which will be gradually lowered as much as possible once your symptoms are under control.
This is because long-term treatment with steroids can cause unpleasant side effects, such as weight gain, mood swings and an increased risk of getting infections.
If steroids are not controlling your symptoms, or you need to take a high dose of steroids, or steroids cause significant side effects, your doctor may suggest taking a different medicine that reduces the activity of your immune system, such as azathioprine or mycophenolate.
These medicines are taken as tablets every day. They can take at least 9 months to take full effect so you'll also need to take one of the previously mentioned medicines at first.
Side effects can include an increased risk of getting infections, feeling and being sick, loss of appetite and tiredness. You'll also need to have regular blood tests to check the amount of medicine in your body.
If these medicines keep your symptoms under control for a long time (usually years), it may be possible to eventually stop taking them.
Surgery to remove the thymus gland, known as a thymectomy, may sometimes be recommended if you have myasthenia gravis.
This has been shown to improve myasthenia symptoms in some people with an unusually large thymus (a small gland in the chest), although not in people with a thymus that's grown abnormally (a thymoma).
Symptoms will usually improve in the first few months after surgery, but may keep getting better for up to 2 years.
- reduce the dose of steroids you need to take
- reduce the chances of needing to take other immunosuppressants
- reduce the chances of needing to go into hospital because of worsening symptoms for at least 3 years after surgery
If you have a thymoma, a thymectomy will not usually have much of an effect on your myasthenia symptoms. But surgery to remove your thymus gland will often be recommended because it can cause problems if it's left to keep getting bigger.
Thymectomies are often carried out using keyhole surgery techniques. This is where the thymus is removed using surgical instruments inserted through small cuts (incisions) in the chest.
Emergency treatment in hospital
Some people with myasthenia gravis have periods where their symptoms get suddenly worse – for example, they may experience severe breathing or swallowing problems.
These potentially life-threatening symptoms, known as a mysathenic crisis, require urgent treatment in hospital.
Treatment may include:
- oxygen through a face mask
- using a breathing machine (ventilator)
- intravenous immunoglobulin therapy – a treatment made from donated blood, which improves muscle strength by temporarily changing how your immune system works
- plasmapheresis – where your blood is circulated through a machine that filters out the harmful antibodies that are attacking the communication system between the nerves and muscles
Help and support
Living with a rare, long-term condition can be very difficult. Some people find it helpful to get in touch with a local or national support group.
The main UK charity for people with myasthenia gravis and their families is Myaware.
Myaware provides useful information and advice about living with myasthenia gravis. They also have a Facebook group and local support groups.