Polymyalgia Rheumatica (PMR)
An Information Booklet
What is polymyalgia rheumatica?
Polymyalgia rheumatica (usually shortened to '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 are eased by taking aspirin or other pain-relieving tablets. In PMR, however, painkillers or anti-inflammatory drugs on their own are not enough to ease the aches and pains.
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 50 onwards but the overall average age for it to start is 70. Women are affected about 2–3 times as often as men and it affects 1 in 2000 people.
What are the symptoms?
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 dressing yourself or climbing stairs. The pain in your muscles is quite different from the ache you can feel after doing unaccustomed exercise. The muscle pain is often widespread and is made worse by movement. The pain may wake you at night and you may find it difficult even to turn over in bed.
Sitting for any length of time may cause stiffness, making 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 to run a slight fever. You may well find that you lose weight, and people with PMR often feel low or may even become depressed.
You may also 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 arteritis is 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. To avoid possible eye damage 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 order to diagnose temporal arteritis your doctor may need to take a biopsy of a blood vessel in your scalp. Under a local anaesthetic to numb the area, a small piece of artery is removed. This is then examined 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 just growing older. But the description of how the pain and stiffness start and a blood test (see 'What tests are there?') will point to the diagnosis of PMR. Sometimes the diagnosis is confirmed by a dramatic improvement once corticosteroid treatment begins.
Rheumatoid arthritis can sometimes start in a similar way, but this is usually accompanied by swollen joints. Wear in the neck (called cervical spondylosis) can sometimes be mistaken for PMR. (See arc booklets 'Rheumatoid Arthritis', 'Pain in the Neck'.)
What tests are there?
The diagnosis of PMR depends on your doctor taking a thorough history of your illness, followed by an examination and relevant tests.
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 settle at the bottom of a test tube (as a sediment), leaving a layer of clear liquid (plasma) above it. The sedimentation rate is usually quicker in blood from somebody with PMR. However, the ESR measures inflammation in the body generally and may also be increased in people with other conditions, while in some patients with PMR the ESR may be normal. The ESR is just one way of measuring inflammation – other methods include the plasma viscosity (PV) and C-reactive protein (CRP) tests.
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 is very effective in PMR. Corticosteroids are often called 'steroids' for short, but they are not the same as the 'steroids' sometimes used by athletes to build up their bodies (these are properly called 'anabolic steroids'). Your body makes several of its own steroids in the adrenal glands which sit on top of the kidneys – 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 can reduce inflammation. They are particularly useful in treating PMR, where the effect can be dramatic.
The tablet most often prescribed is prednisolone, though different drug companies produce similar tablets with different names. Steroids are best taken after breakfast to prevent irritation of the stomach. Some tablets have a special coating to reduce the risk of upsetting the stomach. (See arc leaflet 'Steroid Tablets'.)
Corticosteroid drugs come in the form of pills of different colours, sizes and strengths. For example some tablets contain 5 mg prednisolone while others contain 1 mg prednisolone. If you are being treated with steroid tablets, you must know exactly what dose you are supposed to be taking – in milligrams (mg) – and how many tablets of each strength you have to take every day. Otherwise it can be easy to make mistakes.
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 in order to prevent eye damage.
Because of the side-effects of steroids (see 'What are the side-effects of corticosteroid treatment?' below) your doctor will start you on one dosage level and then try to reduce the dose you are taking – this will be done over a period of time. Your doctor will make the reductions depending on your symptoms and possibly your ESR reading.
Everyone is different, so the treatment has to be designed for each individual. If your symptoms return at one level of dosage, your doctor may increase the dose by 1 mg and try again to reduce it 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 take 4 mg a day for much longer than you took 9 mg a day.
Corticosteroids do not cure PMR – they simply suppress the symptoms. However, 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'. Even if you feel well, your doctor may wish to see you regularly so that you can be assessed for signs of a relapse (the symptoms coming back) or side-effects from the drugs.
If your symptoms are mild, you may be advised to take analgesics such as paracetamol to help ease the pain and stiffness, along with small doses of steroid tablets. Alternatively, your doctor may recommend anti-inflammatory drugs alongside low-dose steroids.
Your doctor may decide that you should continue on a small dose (a maintenance dose) of steroid tablets indefinitely.
If new symptoms develop you should contact your doctor promptly as PMR-like symptoms can be due to other causes.
What are the side-effects of corticosteroid treatment?
The longer you are taking 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, osteoporosis (where the bones become porous and fragile – see 'What should I know about osteoporosis?' 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 (which can cause blurred vision). Your blood sugar level may rise and if you have diabetes you may need a change in your diabetes treatment. If you suffer from epilepsy, then it is possible that steroid tablets could make the epilepsy worse. Steroid tablets can also make glaucoma (increased pressure within the eyeball) worse. High doses of steroid tablets can cause a rise in blood pressure.
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 sometimes disguise the signs of infection, so it is important to tell your doctor if you feel unwell or develop any new symptoms after starting steroid tablets. If you have not had chickenpox and you come into contact with someone who has chickenpox or shingles, you should contact your doctor as you may need special treatment. If you develop chickenpox or shingles yourself you should see your doctor immediately. For further information see the separate arc leaflet 'Steroid Tablets'.
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 health from time to time – for example your weight, blood pressure and the sugar level in your blood or urine.
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?
Osteoporosis means that the bones become porous and fragile, 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 1.0 g (1000 mg) per day if you are under 60 or 1.5 g (1500 mg) per day if you are over 60 (see Table 1 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. Walking is probably more suitable for people with PMR and even this may be difficult for some people, but try to do what you can.
- Avoid smoking and reduce the amount of alcohol you drink.
| Table 1. Approximate calcium content of some common foods | |
|---|---|
| Food | Calcium
content |
| 115 g (4 oz) whitebait (fried in flour) | 980 mg |
| 60 g (2 oz) sardines (including bones) | 260 mg |
| 0.2 litre (1/3 pint) semi-skimmed milk | 230 mg |
| 0.2 litre (1/3 pint) whole milk | 220 mg |
| 3 large slices brown or white bread | 215 mg |
| 125 g (41/2 oz) low-fat yogurt | 205 mg |
| 30 g (1 oz) hard cheese | 190 mg |
| 0.2 litre (1/3 pint) calcium-enriched soya milk | 180 mg |
| 125 g (41/2 oz) calcium-enriched soya yogurt | 150 mg |
| 115 g (4 oz) cottage cheese | 145 mg |
| 3 large slices wholemeal bread | 125 mg |
| 115 g (4 oz) baked beans | 60 mg |
| 115 g (4 oz) boiled cabbage | 40 mg |
| Note: measures shown in ounces or pints are approximate conversions only. | |
Your doctor may advise the use of drugs to slow progression of osteoporosis such as bisphosphonate drugs – risedronate (Actonel) or alendronate (Fosamax). You may also be asked to have a bone density scan to assess the strength of your bones. For more information about osteoporosis see the arc booklet 'Osteoporosis'.
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 2 years or longer, and 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. Relapse is most frequent in the initial 18 months of treatment, but may occur later after stopping steroid treatment. Symptoms rarely come back if you have been well for some time.
Occasionally other drugs called immunosuppressants (for example, methotrexate) are used to help keep the disease under control while reducing the dose of steroids. Immunosuppressants are usually given only to people who have had repeated relapses.
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. Activity and moevement usually help to ease early-morning stiffness. Maintaining a positive and active lifestyle are beneficial – particularly when reducing the dose of steroids. However, be careful not to overdo the exercise, otherwise your symptoms may worsen. You will need to find, through trial and error, how much 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. Many people find that hot baths or showers help to relieve pain and stiffness.
Should I see a specialist?
If you have PMR the condition may be 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 if there are complicating factors, or if it is proving difficult to reduce the dose of steroids without causing a relapse.
Case history
Hannah has had PMR for 3 years
It started when she was in her seventies. The onset was very sudden; she awoke with severe pain and stiffness and was unable to get out of bed until the stiffness eased several hours later. Her GP suspected PMR; he requested a blood test and referred her to the local hospital. When Hannah saw the rheumatologist soon afterwards her symptoms were less severe, but pain and stiffness in her thighs and upper arms were still distressing, particularly in the morning. She had no appetite, could not wash or dress without help, and she was very tired and tearful.
The rheumatologist confirmed the diagnosis of PMR. Hannah started taking prednisolone at 15 mg a day. Within 24 hours her symptoms disappeared; she was immensely happy and relieved. Over 18 months the steroids were gradually reduced. Hannah still had bad days when everything took twice as long as usual, when stiffness made her clumsy and she kept dropping things, when feelings of lethargy weighed her down. She became keenly aware of the need to keep active as this helped to ease the stiffness and aching.
Hannah is now well. Since her illness she's been on two trips to see her family in Australia. She can do all the things she wants to. Bad days are rare; but she is cautious not to overtire herself and is grateful that PMR does not cause her too many problems.
Useful addresses
The Arthritis Research Campaign (arc)
PO Box 177
Chesterfield
Derbyshire S41 7TQ
Phone: 0870 850 5000
www.arc.org.uk
As well as funding research, we produce a range of free information booklets and leaflets. Please contact the above address for a list of titles or, on this website, see Publications for People with Arthritis.
Arthritis Care
18 Stephenson Way
London NW1 2HD
Phone: 020 7380 6500
Helplines: 020 7380 6555
or freephone: 0808 800 4050
www.arthritiscare.org.uk
Offers self-help support, a helpline service (on both numbers above), and a range of leaflets on arthritis.
Information on drugs
Separate arc leaflets are available on many of the drugs used for arthritis and related conditions. We would recommend that you read the relevant leaflets for more detailed information about your medication.
