Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Lord Black of Brentwood Excerpts

Wednesday 30th March 2011 Grand Committee

[Lord Black of Brentwood]

My Lords, I am greatly indebted to the noble Lord, Lord Wills, for securing this debate. Polymyalgia rheumatica, on which I want to concentrate this afternoon, is an illness about which I have deep personal feelings, for reasons that I shall explain in a moment, and I am enormously grateful for the opportunity to say a few words on it.

Polymyalgia rheumatica is a dreadful condition which, I believe, has for far too long been overlooked. In answer to a Question that I tabled at the end of last year, the Minister—and I was very grateful to him for his reply—said that there were not even any central records about how many people were afflicted by this illness. He helpfully cited a review from the British Medical Journal of April 2008, which reported that the incidence of polymyalgia rheumatica in people over the age of 50 was about 100 per 100,000.

This is not therefore a very common illness. It impacts mainly on older women over the age of 70, and often on people who are already ill with other conditions such as osteoporosis, which is itself a dreadful scourge. Perhaps that is why we pay so little attention to it. However, we should, because my belief is that this condition is really a potential killer—not because the symptoms overwhelm the patient but because the treatment can. In itself, this illness is self-limiting and will disappear within two to three years, but my fear is that far too many people never get to that point because the steroids that are at the moment the only realistic treatment for this illness so weaken them over that time period.

If your Lordships will indulge me, I should like to tell the Committee about my personal experience. My mother had suffered from osteoporosis for many years. It was, as is so often the case, diagnosed too late because of the failure of GPs to recognise the condition. However, that is a matter for another day. In the summer of 2008, she fell ill with the excruciating pain in the joints that is the classic hallmark of polymyalgia rheumatica. A specialist diagnosed the illness and began her on a course of treatment with a corticosteroid called Prednisolone.

Neither he, nor our GP, informed me or any of my mother's closest relatives about what the appalling consequences of prolonged treatment with this dreadful drug would be. We were told that this condition was easily manageable with these tablets. But we soon found out at first hand that it was not.

Within a month of being started on a high dose of this steroid, this normally slim lady put on a great deal of weight, placing burdens on her heart. Then, even more devastatingly, infections began in the chest and in the bladder. Each month a new one developed, with prolonged spells of hospitalisation, as her immune system was shredded by these steroids. Then injuries began in her legs as her skin became thinner and thinner. During one admission in Basildon hospital, she sustained an injury to her leg when a wheelchair was banged into her. The wound never healed.

Worse was to come. In what turned out to be her last Christmas, her personality began to change, as she became anxious, depressed, confused and irritable. It was not until I begged her doctors to reduce the high levels of Prednisolone that she regained her warm and ebullient personality. At the same time, these drugs took a blow torch to her osteoporosis, which rapidly worsened, causing her excruciating pain in her shoulders and legs.

Not long after, thanks no doubt to the weight she had gained and the trauma caused to her body, she suffered a heart attack. A few weeks after that she fell ill with her fourth chest infection in eight months and died in February 2009. Although it is not a killer disease, it was, I believe, polymyalgia which killed her. Not the illness but the only available treatment.

Since then, I have looked in much more depth as a lay person—I readily admit that I have no medical expertise—at the impact of Prednisolone, used over a prolonged period, on the human body. An article in the Nursing Times on 25 April 2006 set it out rather well. It mentioned that Cushing's syndrome, water retention, weight gain, acute risk of infection as a result of the attack on the immune system, gastric disturbance and peptic ulceration, skin changes and bruising, increased risk of osteoporosis—or a worsening in those that already have it—changes in mental state, inability to sleep, worsening arthritis and glaucoma and, of course, giant cell arteritis, are all side effects of the prolonged treatment that is necessary for polymyalgia. I know from first hand how devastating they can be. How many people have died? How many more will have to do so before we recognise this often overlooked condition and treat it as such?

I am not so naive as to believe that there are any easy answers to this question, but there are things which can and should be done. First, we should recognise that this is a life-threatening disease because of the way that it is currently treated. As an illness it can mean prolonged steroid use for up to three years, and that can be a death sentence in older people.

Secondly, I believe that GPs should be better trained to explain to polymyalgia sufferers and their relatives what the consequences of steroid use will be. There should be proper advice on how to mitigate those effects, including diet changes, the use of prophylactic antibiotics, or a pneumococcal vaccine to help prevent lung infections, none of which was offered to my own mother.

Thirdly, corticosteroids such as Prednisolone should come with much more serious warnings than they do about their harmful consequences. Doctors should be obliged to keep the doses of it as low as possible, seeing their patients every week if necessary to try to monitor their impact and to cut them down when they can. Finally, there should be more research into what causes this illness and how it can be prevented. As an illness of those in their twilight years, in those who are already ill, it is often overlooked. But if we could get to the root causes of it, and help to try to prevent it, many thousands of lives would be lived more fully than they currently are.

I have been able to relate today the experience of just one family. There are many more out there for whom it is already too late. But let our gift for the next generation be to redouble our efforts to deal far more effectively and humanely than we ever have before with this horrible illness.