As promised: Jane’s account of how the condition changed her life.
PMR (polymyalgia rheumatica) is a painful, debilitating condition which affects
the muscles. Symptoms and the condition’s severity vary from patient to
GCA (giant cell arteritis) can occur on its own but about 25% of patients with
PMR suffer from GCA. As the name suggests enormous cells form in the wall of
inflamed arteries. This affects the normal flow of blood to many areas of the
body. A patient’s sight is particularly at risk and this may occur unless
treatment is started quickly. The condition may cause headaches and
tenderness at one or both sides of the forehead, blurred vision, and (in my
case) jaw pain when chewing. It makes you feel very unwell generally.
I became ill, suddenly, seven years ago in August 2012. I was a fit and healthy
68 year old. Peter (my husband) and I had just completed an eight-mile strenuous walk along a coastal path in Wales when pains developed in my hands, then my shoulders. Within a few hours I was in agony. I couldn’t climb into bed. I couldn’t even switch on a light.
My GP was very quick to act. Blood tests showed my CRP (inflammation
marker) was 168 (normal is less than 5.) However, despite seeing a very senior
rheumatologist, diagnosis was slow. By now I was in a wheelchair. Strong
painkillers had very little impact on my symptoms. The rheumatologist was
unsure whether I had Rheumatoid Arthritis or PMR. He gave me a 60mg
steroid injection and within a few hours I could move and the pain subsided.
GCA was diagnosed five months later. I was lucky. As I was taking steroids
already, my risk of sight loss – in one or both eyes – was very much reduced.
PMR and GCA are auto-immune diseases. Although the majority of patients suffer with just one condition, some patients develop other auto-immune diseases. For the past seven years I seem to have a new diagnosis about once a year. The worst of these is Rheumatoid Arthritis. I have a severe form of this.
The good news is that new drugs are being developed all the time. I am on a
trial for a biological drug. It is hoped that, in the future, steroid-sparing
treatments such as this, will prevent the devastating side effects of conditions
such as GCA. In my case, I have had no GCA flares since starting the bio drug
twelve months ago. Even more importantly, I feel so very much better and, best of all, I am off steroids – they can have long-lasting side effects when
taken for many years at high doses. I am also able to walk about a mile without
suffering from overwhelming fatigue.
Much more research is needed to find treatments (such as the bio drugs) and
research any potential long-term problems with them. At present, the bios are
very expensive, so doctors have to ration their use. There’s a nice irony that
having so many auto immune conditions has worked in my favour.
Ninevoices is a group of nine enthusiastic writers. We met nearly twenty years ago, and have got together every fortnight for most of that time. We have organised several writing competitions and the members decided to donate any profits to the little known charity: PMRGCAUK. (Yes, terrible title. The organisation is trying to find a better one.)
I was delighted and so was the organisation. Each of you, who entered our
competition, has taken PMRGCAUK one tiny step further to finding affordable
treatments and, hopefully one day, a cure.
Thank you all so much.