What is polymyalgia rheumatica?
Polymyalgia rheumatica is usually shortened to ‘PMR’. PMR is a rheumatic condition in which you have many (poly) painful muscles (myalgia). We do not yet know the cause. It is common and very treatable with drugs called corticosteroids (also known as steroids).
Almost everybody has aches and pains of one kind or another as they grow older. In most cases these cause little trouble and respond easily enough to simple aspirin or other pain-relieving tablets. In PMR, however, the aches and pains are not eased by painkillers or anti-inflammatory drugs.
How does it start and who is affected?
PMR often strikes suddenly – appearing over a week or two and sometimes just after a flu-like illness. You may go to bed feeling fine, but wake up very stiff the next morning. PMR can start at any age from about 50 onwards but the overall average age for it to start is about 70. Women are affected about twice as often as men.
What are the common complaints with PMR?
If you have PMR you probably have severe and painful stiffness in the morning, especially in your shoulders and thighs. You may find that the stiffness in your arms is so bad that you cannot get out of bed without help, or you may have real difficulty with stairs or dressing. The pain in your muscles is quite different from the ache you can feel after doing unaccustomed exercise. The pain may wake you at night and you may find it difficult to turn over in bed.
Sitting for any length of time may cause stiffness. This can make driving, for instance, more difficult. On a long journey, it makes sense to stop from time to time to stretch your legs.
It is also common to feel generally unwell, or even run a slight fever. You may well find that you lose some weight, and people with PMR often feel low or may even be depressed.
You may have painful inflammation of the blood vessels (arteries) of the skull. This can cause severe headaches and pain in the muscles of the head. This is called temporal arteritis – the temples are often tender to the touch and chewing may cause some pain in the side of your face. Temporal arteritisis also sometimes known as ‘giant cell arteritis’. IMPORTANT NOTE: With temporal arteritis there is a risk of damage to the arteries of the eye. If treated at the right time, this damage can be prevented by corticosteroid drugs, which in such cases are usually given in higher doses than for PMR alone. You should report any pain or swelling in the scalp to your doctor immediately, especially if you have problems with your eyes such as blurring or double vision.
In temporal arteritis your doctor may need to take a biopsy of a blood vessel in your scalp for diagnosis. This means that, under a local anaesthetic to numb the area, a small piece of artery is removed. This is then looked at under a microscope.
How is PMR diagnosed?
Unfortunately there is no single specific test to diagnose PMR and you may not be diagnosed straight away. But it is important that PMR is spotted because doctors can do a lot to ease the pain. Pains which start suddenly in your shoulders (especially) but also in your thighs, together with stiffness, should alert your doctor to the fact that you are suffering from an illness rather than just general aches and pains.
However, it is easy for your doctor – or even you – to blame these aches and pains on family or work tensions, social problems, osteoarthritis – or even just growing old. But the description of how the pain and stiffness start, and a blood test (see below) all point to the diagnosis of PMR. Sometimes the diagnosis is confirmed by a dramatic response to corticosteroid drugs.
Rheumatoid arthritis can sometimes start in a similar way, but this usually happens along with swollen joints. Wear in the neck (called cervical spondylosis) can sometimes be mistaken for PMR. See arc booklets Rheumatoid Arthritis and Pain in the Neck.
What tests are there?
If PMR is suspected, your doctor will usually arrange for you to have a blood test called the erythrocyte sedimentation rate (ESR). This test measures the rate at which the red blood cells fall to the bottom of a tube (as a sediment), leaving a layer of clear liquid (plasma) above it. The sedimentation rate is usually quicker in blood from anyone with PMR. However, the ESR measures inflammation in the body generally and it is also increased in a number of other conditions.
Your doctor may also arrange for tests in order to rule out other diseases. For example, if you have PMR you may well also have slight anaemia (lack of red blood cells). However, once again, other diseases can cause similar symptoms.
How can PMR be treated?
Corticosteroid treatment (also called steroid treatment) is very effective in PMR. Your body makes several of its own steroids in the adrenal glands – the most important of these is called cortisol. Steroids are an important part of your body’s chemistry, and they help to keep you healthy. They carry out many daily functions such as maintaining blood pressure and balancing salt and water in the body.
If corticosteroid drugs are given in doses larger than the amount we already have in our bodies, then they reduce inflammation. They are therefore particularly useful in treating PMR, where the effect can be dramatic.
Corticosteroid drugs come in the form of pills of different colours and sizes (steroid tablets). If you are having this form of treatment, you must know exactly what dose you are supposed to be taking – in milligrams (mg). Otherwise it can be easy to make mistakes.
The tablet most often prescribed is prednisolone, though different drug companies produce similar tablets with different names. Some are covered with ‘enteric’ coating to reduce the risk of upsetting the stomach. See arc leaflet Steroid Tablets.
In most cases, 15 mg of prednisolone a day makes the symptoms disappear completely. However, if you have temporal arteritis, you will need higher doses. Because of the side-effects of steroids (see below) your doctor will start you on one dosage level and then try to reduce the dose you are taking and this will be done over a period of time. Your doctor will make the reductions depending on your symptoms and possibly your ESR reading.
Every person is different, so the treatment has to be designed for each individual. If symptoms return at one level of dosage, your doctor may increase the dose by 1 mg and try to reduce it again after some weeks. As the dose of steroid tablets is reduced, it may take longer each time before it can be reduced further. For example, you may need to be on 4 mg a day for much longer than you were on 9 mg a day.
Corticosteroids do not cure PMR – they simply suppress the symptoms. But they are very effective in what they do. People who have been suffering from the disease for weeks or months before they started the treatment often describe the results as ‘miraculous’. However, even though you feel well, make sure you see your doctor regularly so that you can be assessed for signs of a relapse (the symptoms coming back) or side-effects.
If your symptoms are mild, you may be given anti-inflammatory drugs to help pain and stiffness, along with small doses of steroid tablets.
Your doctor may decide that you should continue on a small dose (a maintenance dose) of steroid tablets indefinitely.
What are the side-effects of corticosteroid treatment?
The longer you are taking corticosteroid tablets (steroid tablets) and the higher the dose, the more likely you are to have problems. Your doctor will take this into account and will keep you on the lowest possible dose that keeps the PMR under control. However, very often steroid tablets are necessary to control the disease, so it is a question of carefully weighing up the risks and benefits of continuing on them. If you are on very low doses of steroid tablets you may never experience any problems.
The most common side-effects are putting on weight, a round face, thinning of the bones (osteoporosis, see below), easy bruising, indigestion, stomach pains, stretch marks and thinning of the skin. They can also cause muscle weakness, changes in mood (for example feeling depressed) and cataracts. Your blood sugar level may rise and if you have diabetes you may need a change in the treatment of your diabetes. If you suffer from epilepsy, then it is possible that steroid tablets could make the epilepsy worse. Steroid tablets can also make glaucoma worse.
Taking steroid tablets can make you more likely to develop infections. If this happens or if you have a fever you should report to your doctor. But steroid tablets can also disguise the signs of infection. So if you feel unwell or develop any new symptoms after starting steroid tablets, it is important to tell your doctor. High doses of steroid tablets can cause a rise in blood pressure.
If you have not had chickenpox but you come into contact with someone who has chickenpox or shingles, you should report to your doctor immediately as you may need special treatment. If you develop chickenpox or shingles you should report to your doctor immediately.
As mentioned above, if you have temporal arteritis larger doses of steroid tablets have to be used. In this case side-effects are more likely.
Do I need any special checks while on steroid tablets?
Your doctor may check your general condition from time to time. For example your weight, blood pressure and blood sugar level.
What other precautions should I take while on steroid tablets?
You should not stop taking your steroid tablets or alter the dose unless advised by your doctor. It can be dangerous to stop steroids suddenly.
When taking steroid tablets you must carry a Steroid Card, which records what dose of steroid tablets you are on and how long you have been taking them. If you are not given a steroid card, ask your doctor or pharmacist for one. You should show the card to any other doctor who is treating you, for example if you need treatment while on holiday, have an accident or need an operation. In these circumstances the dose of steroids usually has to be increased.
What should I know about osteoporosis and how can I reduce the risks?
Osteoporosis means thinning of the bones, making fractures more likely. As mentioned above, long-term treatment with steroid tablets can cause osteoporosis. To reduce the risk it is a good idea to follow the general recommendations below. However, you should also ask your doctor for advice on your particular case:
- Make sure your calcium intake is at least 1.5 g (1500 mg) per day (see arc booklet Osteoporosis for details of the calcium contents of common foods). Vitamin D supplements may also help.
- Do at least 30 minutes of weight-bearing exercise each day (that is, exercise which involves walking or running – though walking is probably more suitable in the case of PMR).
- Avoid smoking and reduce the amount of alcohol you drink.
- Your doctor may advise the use of bisphosphonate drugs (Didronel or Fosamax) or hormone replacement therapy (HRT).
How long does PMR last?
In most cases PMR disappears after time, so you can probably look forward to a complete recovery. Treatment is often required for two years or longer.
Occasionally some people with PMR need to remain on small doses of steroid tablets for many years. But even then they are usually able to enjoy a fairly normal life. Occasionally, other drugs called immunosuppressants are used to help reduce the dose of steroids. Symptoms rarely come back if you have been well for some time.
What can I do to help myself?
There are no specific foods that you should avoid, but you should make sure that you eat a balanced diet with plenty of fresh fruit and vegetables. You should also keep as fit and active as you can. This helps prevent osteoporosis. Swimming, cycling (perhaps on a static bike) or walking are best. However, do not overdo exercise, otherwise your symptoms may worsen. You will need to find, through trial and error, how much exercise you can do. Be aware of any changes in the way you feel which let you know that you have done enough – and remember to stop at this point next time. One way of doing this might be to keep a daily diary. Also, try alternating heavier and lighter tasks and plan ahead.
Should I see a rheumatologist?
If you have PMR you may have the condition diagnosed and treated by your family doctor (GP). However, quite often people with PMR will be referred to a rheumatologist for confirmation of the diagnosis and to plan treatment. You will also be referred if there is some difficulty with the diagnosis, or there are complicating factors.