Steroid Information Sheet

 

This leaflet answers some common questions patients ask about prednisolone when they are used to treat myasthenia. Further information can be found in the information leaflet supplied by the manufacturer or from you consultant neurologist, specialist nurse, pharmacist or GP.

What are steroids?

Steroids are a type of medication called an immunosuppressant. They reduce the production of antibodies by 'damping down' the activity of the body's immune system.

This helps messages getting through from the nerves to the muscles and muscle strength improves. Other immunosuppressants that have been used to treat myasthenia gravis include azathioprine, ciclosporin, mycophenolate mofetil (MMF) and methotrexate.

When are steroids prescribed?

In patients with mild myasthenia gravis, medicines called acetylcholinesterase inhibitors (e.g. pyridostigmine) are usually prescribed to increase muscle strength. They work by increasing the effect of the chemical messenger (acetylcholine) which transmits information from the nerves to the muscles. If the symptoms cannot be controlled using these drugs the next stage of treatment is some form of immunosuppressant to help increase muscle strength.

Steroids for myasthenia gravis

Steroids such as prednisolone are the immunosuppressant that is usually prescribed first. Some patients have other conditions, such as diabetes, where steroids are best avoided. In others, the myasthenic symptoms cannot be fully controlled with steroids without them causing side effects. In these patients another immunosuppressant (usually azathioprine) may be prescribed. Combining steroids with a second immunosuppressant often allows a smaller dose of steroids to be used, minimising side effects, such as osteoporosis.

How quickly do steroids work?

Symptoms usually start to improve 2-4 weeks after treatment is started. Maximum benefit is usually seen after 6-12 months of treatment.

How well do steroids work?

It is thought that for every 10 patients with myasthenia gravis who are treated with steroids, between 4-8 people will either go into remission or have such good symptom improvement that they show almost "normal" muscle strength. How well you respond to steroids depends on how severe your myasthenia is.

When do I take steroids?

Steroids are usually taken every day or every other day in the morning; after or with breakfast. Your neurologist or specialist nurse will advise.

What dose should I take?

This is different for every patient and may change throughout your treatment. Steroids are usually started at a low dose for example prednisolone 5-10 mg each day and the dose gradually increased. This is because high doses of steroids at the start of treatment can make the muscles weaker. Therefore the dose is built up slowly. Once the recommended dose has been reached (prednisolone up to 80-100 mg every other day or up to 50 mg each day) it is usually held there for several months. After this, the dose is usually reduced over a number of months to the lowest dose that controls the symptom.

Ideally, the dose of steroid should be reduced to 7.5 mg every day. This is in order to lower the risk of side effects. Unfortunately, it is not always possible to lower the dose of steroid by this much and few people are able to stop steroid treatment altogether.

Note: When you start treatment with steroids you may find that your symptoms are worse in the beginning.

What is the length of treatment?

The length of treatment is different for each person; however, treatment is usually long-term (months or years). Some people will need steroids permanently. If you symptoms are well controlled, your consultant neurologist may decide to gradually lower the dose to find the minimum dose that will keep the symptoms away. If symptoms return, it may be necessary to increase this dose again.

Stopping steroids

Never stop taking steroids abruptly. Steroids are very similar to a hormone that is made in your body called cortisone. When you start taking steroids, your body can stop making its own. Your body will become used to the steroids level in your body and stopping them suddenly may cause you to experience withdrawal symptoms. These effects include weakness, tiredness, feeling sick, vomiting, diarrhoea, abdominal pain, low blood sugar and low blood pressure which can cause dizziness, fainting or collapse.

Any dose reduction should be supervised by your consultant neurologist, undertaken slowly and over a number of weeks or months. This will allow your body to start making its own corticosteroids and you should not have any of these effects.

It is important to always tell your GP or pharmacist if there is any reason you cannot take your medication.

What should I do if I miss a dose?

If you forget to take your medication in the morning, take it as soon as you remember the same day. If you forget to take your medicine, and do not remember until the next day, take your medicine as normal the next day. Do not take double the dose the next day.

What are the possible side effects?

Like all medicines, steroids have a number of side effects. In general it is thought that side effects are more likely to occur if you are taking high doses or if you are taking steroids for a long time. It is important to remember that not everyone will experience side effects and for most, the benefit of steroid treatment is far greater than the risk of getting any of the side effects listed below. The more common side effects of steroids are:

Osteoporosis

This is when bones become weak and fragile. Osteoporosis usually occurs when you take steroids for a long time (e.g. greater than three months). Your doctor should monitor regularly and assess your risk of getting osteoporosis. You may need to take medicines to help prevent osteoporosis (e.g. a bisphosphonate and calcium supplements). Your consultant neurologist will advise.

Stomach or duodenal ulcers

If you develop indigestion or stomach pains, contact your GP for advice. If you are at high risk of getting an ulcer, your doctor may prescribe a medicine to help prevent ulcers (e.g. a proton pump inhibitor such as omeprazole).

Increased risk of infection

Steroids reduce the activity of the immune system. This means that you are not able to fight infection in the same way. This is particularly important if you have not had chicken pox before and you come into contact with someone who has chicken pox. If people on immunosuppressants get chicken pox or shingles, they can get very severe infections and they may need special treatment. If you take steroids, try to avoid people who have chicken pox or shingles. If you come into contact with anyone who has chicken pox or shingles, contact your GP as soon as possible.

Mood changes

Some people may find that steroids make them feel better, but other patients may find that they suffer from a low mood. For some people who have depression or other mental health problems, steroids can sometimes make these conditions worse. It is thought that mood changes are more likely to occur within the first few weeks of treatment or at high doses.

Increased appetite and weight gain

People who take steroids for a long time can put on weight. This is because steroids may increase your appetite. It is important to maintain a healthy diet and weight. People may also find that their face becomes puffy. This is sometimes referred to as having a 'moon face'.

High blood pressure

Your GP should check your blood pressure on a regular basis (and you should consider buying a home BP monitor).

Skin problems

Steroids can cause thinning of the skin, stretch marks and poor healing. You may also find that you bruise more easily.

Cataracts and glaucoma

These are conditions which affect your eyes. Contact your GP or optician if you feel your eyesight is worsening.

Hair growth

Steroids may cause increased or darkened hair growth. Your hair usually returns to normal if treatment is stopped.

High blood sugar

Steroids may increase the amount of glucose in your blood. Sometimes they can also cause diabetes. Your GP should monitor you regularly for this, especially if you have a family history of diabetes.

For a full list of side effects with more detailed information, please see the leaflet that came with your medicine or here.

Do I need any special test whilst taking steroids?

Your GP should monitor your regularly throughout your treatment. This will involve routine blood pressure and blood tests to check how much glucose or potassium is in your blood. These can be done at your GP surgery. Your GP may also send you for a bone scan to see if your bones have been affected by the medication.

Can I take other medicines along with steroids?

Steroids my be prescribed along with other medications, however, it is important to discuss any new or old medications with your neurologist and GP before starting them.

It is important that you do not take any anti-inflammatory painkillers (e.g. ibuprofen or diclofenac) unless this has been advised by your GP. This is because this type of painkiller can increase your risk of having a stomach or duodenal ulcer.

Do not take 'over-the-counter' medications without discussing this first with your GP or pharmacist.

Can I have immunisations whilst taking steroids?

You should not be immunised with live vaccinations such as rubella, if you are taking steroids. However, in certain situations a live vaccine may be indicated (for example, rubella immunisation in women of childbearing age). In this case your doctor will discuss the possible risks and benefits of the immunisation with you. Pneumovax® (a vaccine for pneumonia) and yearly flu vaccines are safe and recommended.

Steroid cards

You should be given a steroid card by your GP or pharmacist. You should carry this with you at all times. If you should need emergency treatment, the doctor or nurse treating you knows you take steroids. You may need higher doses for a short time whilst you are ill.

What about pregnancy?

If you are planning on having a baby, please seek the advice of your neurologist well in advance so you can discuss how best to manage your myasthenia during your pregnancy.

It is possible to take steroids during pregnancy, but the risks of doing so will have to be carefully balanced against the benefits. If you become pregnant whilst taking steroids, contact your neurologist immediately.

You can find more information on myasthenia and pregnancy here.

What about breastfeeding?

You can breast feed if you are taking steroids, but you should discuss this with your neurologist.

Can I drink alcohol with steroids?

There is no particular reason for you to avoid alcohol completely, however, you should not exceed the recommended daily units.

 

Keep all medicines out of reach of children

 

Never give any medication prescribed to you to anyone else

 

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