- What is PMR and GCA?
- Coping with PMR and GCA
- PMR-GCA Stories
I am 54 years old, married with two pre-teen daughters. I have an active job as a project manager managing development projects in the specialist electron tube industry. I am overweight but active, for instance I cycle 14 miles to work each day.
On the first day of snow before Christmas 09, with cars slipping and sliding as they left our village, I played safe (I thought!), left the bike at home, put my walking kit on and walked to work. Halfway there I failed to notice a kerb under a snowdrift and twisted my ankle. A week later with no improvement, I visited A&E and after a week (yes, a week!) of vacillation they finally put it in plaster.
Three weeks later they took the plaster off declaring that the “break” was in fact an old injury and that I had instead torn ligaments.
In the second week of being in plaster I noticed that my hands had begun to ache. The pain in my ankle grew beyond what I would have expected for the injury. I also started to get painful shoulders which I put down to swinging around on crutches all day.
My GP prescribed codeine-paracetomal pills. As the week progressed my aches turned to agony. At the end of the week, on the Saturday night I was pinned to the bed with what felt like steel spears plunged in to my hips and shoulders. The emergency doctor prescribed Dicloflex 150mg per day. Hours later that finally kicked in and I slept for the first time in days.
Over the next week, aches settled down to a live-with level but worsened leading to my limping in to my GP for blood tests. The diagnosis was a bad reaction to the painkillers. I stopped taking the codeine-paracetomal and Dicloflex over the weekend and entered a living hell unable to move and in intense pain.
A visit the next Monday by my GP found me locked on my bed, in agony and crying for it to stop.
The GP advised that he had consulted with others and had changed his diagnosis to PMR. He put me on 40g of steroids and advised that hopefully tomorrow I should feel better. Two hours later I was in hellx2 with the pain and my wife called the emergency doctor’s line who advised me to go back on the Dicloflex.
That first week on the Dicloflex and steroids was pretty much pain free with the only issue being one of insomnia. The next week I reduced my steroids to 30mg on my GPs advise and found some mild shoulder pain returning. On one day in that week, I neglected to take one of my 50mg Dicloflex and hell started to come back.
I discussed this with my GP as I was concerned that the Dicloflex was preventing us judging the effectiveness of the steroids. We initially decided to skip one of the three daily doses of Dicloflex and stay on 30mg of steroids. Afterwards, I felt that the dose of Dicloflex was still too high to see the steroids effects. Dicloflex stays in the system for days.
So after my Friday at noon dose I came off the Dicloflex. Saturday was fine although that evening I had interrupted sleep from shoulder pains. Sunday morning I was stiff and struggling and by lunchtime hell was back. In the next hour and a half I took 100mg of Dicloflex which took nearly 3 hours to bring me back to planet Earth. It is now 7 in the evening on that Sunday and I have managed to get out of bed and am sitting aching and typing this.
In the 2 weeks before PMR was diagnosed I lost 2 stone in weight.
Tomorrow I shall discuss the weekend with my GP.
It seems that high doses of steroids alone cannot keep hell away – it seems I need high doses of Dicloflex too.
As well as the prescribed drugs I have taken up meditating and a Tibetan vitality exercise regime together with tightening up on my diet (I was already a veggie).
I shall also be contacting a PMR support group.
This is just not fun is it!
M.O. Boreham Essex