47 years old and have Polymyalgia Rheumatica
Posted , 8 users are following.
Hi,
I've just had my blood test results back and they show I have Polymyalgia Rheumatica. I don't think I have it as bad as some on here after reading up on everyone suffering. I'm in a lot of pain in my neck, shoulders and arms all the time but it's much worse at night. I'm not sleeping well because of the pain but I guess that's normal?
I have an apponintment on Monday at my doctors to see where I go from here but the last doc said it would be steroids. I'm really not keen on the idea of steroids as i'm already overweight and if I put even mor on that will bring it's own health issues.
Sorry i'm rambling now but it's good to find this forum with people who understand. Did anyone else worry about taking steroids?
jane
0 likes, 19 replies
mary1955
Posted
but I still wake up to severe pain in on arising. Both my legs and arms and all my joints are painful
in the morning. If I overdue, which I don't realize I am, my left leg and sometimes my right leg and arms will become painful. How do I know how much to do so I won't overdue? Please help
mary1955
Posted
I live in a small town in Michigan and will have to travel 2 1/2 hours to see a rheumatologist because there are no specialists near me. I don't mind as long as he can help me with my PMR. I'm still adjusting to the fact that I have it. I was diagnosed the end of February. I have a lot to learn about living with this disease as all of you already know. My family doesn't understand anything about PMR and the ramifications it will have on me in the future. I am glad that this forum is here, because everyone on here has it and is dealing with it.
Please guide me through my learning curve.
EileenH
Posted
A dose of 40mg is pretty high for PMR - PMR should really be approached with a lower dose and 15-20mg is plenty high enough. However, 40mg would be used if there was any suspicion of GCA (giant cell arteritis or temporal arteritis).
If you still have moring pain and stiffness, some doctors suggest splitting the pred dose, taking 2/3 in the morning and the rest late afternoon/evening. The effect of pred lasts between 12 and 36 hours so if you are one of the unlucky ones for whom it wears off in 12 hours splitting the dose is helpful - otherwise it should be taken as early as possible in the morning as a single dose. That means nearer 6am than 10am - it takes an hour or two to be absorbed and the peak blood level to be achieved and you won't get relief from it until then.
As for how much you can do - all I can say is either note how much you did that left you sore and do less the next time until you find your limit or the same the other way round - do a lot less and then increase until you find the amount you are OK with. However, you are still in very early days and things may improve over the next few weeks once the background inflammation is well and truly damped down.
Going to see a rheumy may or may not help. Provided your PCP ruled out all the other things and you responded well to pred it isn't essential to see a rheumy.
The links in this post on this forum will provide you with more info and the final one is a recent paper by experts aimed at GPs who are dealing with PMR patients without a rheumy nearby - your PCP may find it interesting and useful:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Keep in touch - ask away if you have questions that the references I've given you don't cover
Eileen
mary1955
Posted
I will try to split my dosage of prednisone up and see if that helps. Thanks for the suggestions.
Mary