I was diagnosed with PMR in Nov 15 went to bed perfectly OK and couldn't get out of bed or put my socks on in the morning, and also had pains in my jaw. I went to see my GP in the morning,had a chest x ray at13.00, and saw a rheumatologist that afternoon
(a good example of GP's being aware of the problems of GCA], also had a temporal biopsy a week later which was negative. I was put on 20mg Pred/day and the pain went immediately.
During this year since April have been reducing the Pred and got down to 5mg/day when the pains in my thighs and top of my shoulders came back, GP put me back on 10mg/day but pains still exist although at a bearable level I take Paracetamal sometimes.
Have also had some jerking of muscles in my right arm and shoulder which is controlled with Diazapan., and was referred to a Neurologist who wants me to have a brain scan in case of Parkinsons!
Has anyone else had this jerking of muscles as I think there is a connection with the PMR, would be very pleased to know as it is rather worrying. All these problems are being suffered by someone who has been long distance cycling for years and can't even get on a bike anymore!!
Hi Mike,
Welcome to the club!
Can't answer about the jerking muscles I'm afraid, but I'm pretty sure there was discussion about this a few week ago, so I'm sure there will be plenty of responses with advice.
However, I would suggest that your reduction from 20mg to 5mg within 9 or 10 months is very quick. That might indicate that your inflammation has not been controlled properly. It was at 20mg, and probably down to about 10mg, but that seems to be a sticking point for lots of people. Trouble is, if you reduce too quickly, it easy to miss the level at which the inflammation gets out of control. If you still get pains at 10mg that may indicate it's not quite enough, might just be your borderline. If you stay at 10mg for a bit longer and see if pains recede, then don't be in a rush to reduce - try a slow plan rather than an overnight drop, and if necessary go 0.5mg a time. If you're still getting pain, then you may need to go up to say 12mg.
I know this is probably not what you want to hear, but unfortunately PMR takes as long as it takes, all we can do is try and get to the lowest dose of Pred that controls the inflammation. One good bit of news though - men do generally seem to recover quicker than ladies.
Hope you get some answers on your jerking muscles. Take care.
Hi, Thanks for your reply and all the info, the problem seems to be finding the lowest dose of Pred which will keep the pain at bay, the thing that worries me is the side effects of the Pred and perhaps the reduction has been too quick, i will contact my rheumatologist and see what she thinks.
Mike.