Polymyalgia Rheumatica

If you're a first time visitor you will probably have a number of questions about Polymyalgia Rheumatica. This is where I do my best to answer them. I am not a medical doctor, but I was a sufferer for nearly five years. My experience as a patient led me to write a best selling book on the subject, which is available here. I was also involved in setting up PMRGCAuk, the national charity for this illness.

If there is something you wish to know that is not answered here, then you may find the required information in the book or in the Articles page of this website. All information is based on current scientific research, although all opinions are my own and should only be used to supplement information and advice provided by a trained physician.

What is Polymyalgia Rheumatica?

The literal meaning of Polymyalgia Rheumatica is 'muscle pain all over the place'. This describes the symptoms fairly well, but it doesn't tell us much about what the illness actually is. 
 
PMR is an inflammatory condition which causes severe pain and stiffness around the shoulders, back and pelvis. Most experts consider it to be an autoimmune disease and probably a form of vasculitis. Put simply, this means your immune system is attacking your blood vessels by mistake. The illness is an inflammation of the veins and arteries, which causes the painful and disabling symptoms.
 
Your first question on being told you have Polymyalgia Rheumatica is "Why has this happened to me?" It would be great if we could say, "Well, you had that virus a couple of months ago", or, "You have been under a lot of stress".  The fact is that we can't say exactly why any one particular person gets PMR.  The exact cause of the disease is not known, and there are approximately 40,000 new cases in the UK, and 160,000 in the USA every year, and every one of them has a different story to tell. 
 
The British Society for Rheumatology says PMR is the most common inflammatory rheumatic disease in the elderly. However PMR can strike from around the age of 50. I certainly didn't consider myself elderly when my illness hit at 54, so I prefer to describe it as a condition affecting older people. Recovery usually takes a few years. I had PMR for four years, and the estimated average length of the condition is around three and a half years. 

What are the symptoms?

Well, for me it was lots of pain! I'd sometimes wake up in the night with a searing pain in both my shoulders. I would also feel as though I had a vice around my hips that was squeezing hard and making it impossible to move.
 
Doctors are taught that the 'cardinal symptom' of PMR is bilateral shoulder pain, and 'morning stiffness'.  Bilateral means that both the shoulders are affected.  So if you have pain in only one shoulder, chances are it isn't PMR. The morning stiffness is an issue that there is a lot of debate about. Doctors are starting to realise that this stiffness can last all day. You might find that, after sitting down for half an hour, you feel so rigid you can hardly stand up again.
 
Many people with PMR also have a chronic feeling of being unwell, maybe a slight fever that won't go away, and a crushing feeling of fatigue. In fact, experts are listening to patients now and understand that fatigue is a major feature of this illness. Also, you may have lost some weight.
 
So it's not surprising that, with stiffness causing immobility, pain and generally feeling debilitating, PMR will have a major impact on your life.
 

How is PMR diagnosed?

Unfortunately diagnosis can be tricky. It can often be a case of eliminating other possibilities until what's left can only be PMR. A recent study has indicated that up to half the cases thought by GPs to be PMR actually turn out to be something else. This means that there may be thousands of people not getting the treatment that they need.
 
Rheumatology specialists have however, recently agreed a list of seven criteria that can help clinicians with diagnosis. I call these criteria 'The Magnificent Seven' and they are:
 
  1. The person is aged 50 or over
  2. Symptoms have lasted at least two weeks
  3. Aching of both shoulders and/or aching in the pelvis
  4. Morning stiffness lasting at least 45 minutes
  5. An elevated erythrocyte sedimentation rate (ESR)
  6. An elevated C-reactive protein level in the blood (CRP)
  7. Rapid response to corticosteroids
 
The ESR test is a blood test that measures the rate at which red blood cells settle in a blood sample within a period of one hour. The CRP test is a blood test which measures the amount of inflammation in the body. Neither test is conclusive on its own, but if the first four criteria of 'The Magnificent Seven' are met, then blood tests may confirm a case of Polymyalgia Rheumatica. Response to steroids should not be used as a tool for assessment, however it can confirm a correct diagnosis.
 

How is PMR treated?

Polymyalgia Rheumatica is generally treated with a steroid called prednisolone. It belongs to a group of drugs called glucocorticosteroids. These imitate the 'natural' cortisone that our body manufactures every day to regulate a lot of body functions, including the immune system. 
 
International guidelines suggest that the starting dose should be between 12.5 and 25mg a day.  In the UK the standard starting dose is 15mg a day, which you will probably take as three small 5mg tablets, taking them all at once in the morning. This is because our bodies manufacture cortisone in the hours of daylight.  You should feel a marked improvement in your symptoms within a couple of days.  Some people describe the benefit as a miracle.
 
Once your symptoms are well under control. your doctor will want you to start reducing the steroids, as it isn't desirable for you to stay on a high dose of steroids for long.  However, you are likely to be taking prednisolone (or prednisone in the US) at a lower dose, for at least a couple of years.