Muscle pain/steroids

[Ida-June128]

Please can someone explain to me.....do steroids just take away muscle pain from PMR or any and all muscle pain? I am becoming totally confused since my rheumy told me last week he does not think I have PMR (maybe I have gone into remission) but if I increase pred. to 15mg daily I am virtually out of pain.

[PMRpro Ambassador]

Pred is used in other muscle diseases where there is myalgia (muscle pain).

This article may help you understand a bit better

webmd.com/a-to-z-guides/myo...

There are a lot of causes of myalgia, some of them are due to inflammation and some are due to trauma. If it is trauma then pred won't help but if it is inflammation then it often does.

Polymyalgia rheumatica is just the name used to describe a particular set of SYMPTOMS due to an underlying disease process, it isn't the disease itself. In the PMR we discuss on here, it is almost certainly an autoimmune disorder that causes vasculitis, inflamed blood vessels, which probably affects the blood supply to the muscles. This in turn can reduce the blood supply with oxygen and nutrients and the removal of waste products - so there is claudication pain when exercising because of poor blood supply and sore muscles after exercising because of the lactate build-up problem. The pred reduces the inflammation, the blood supply is brought back to more like normal and it doesn't hurt so much. But there are other things that can cause inflammation and sore muscles.

If the PMR had gone into remission you wouldn't need pred to manage inflammation - there wouldn't be any. If he doesn't think it is PMR - what does he think it might be?

[Ida-June128 in reply to PMRpro]

That's the problem...we went through this three and a half years ago and I was tested for everything and he came back to the conclusion that I do have PMR with a touch of fybromyalgia thrown in. To me this is all difficult to quantify; when I was first diagnosed after suffering for over four months my ESR was 66, the pred kicked in within 48 hours...I can remember walking across Sloane Square crying and terrified that someone was going to bump into me, the pain in my upper arms and shoulders was so intense. This was before my left femur snapped and I needed to rely on crutches......since the right femur fractured as well I need the crutches to be mobile so it is becoming difficult to work out what may be muscle pain from having to support 14 stone on my arms and hands and what might be PMR...ditto the thighs..what is muscle pain surrounding the two damaged femurs and the knees complaining from the extra weight and what is PMR pain. I only know that when I take 15mg a day steroids I am virtually out of pain (this topped up by 4 x 100ml Tramadol and the same Paracetamol taken at the same time). Over the last month I have had a lot of discomfort around the pelvic girdle as well but this may be due to the way I am walking. My ESR has been normal for years, but if the steroids are working would not this reading be normal? Checking my blood tests with my GP last week it appears no tests involving CRP have ever been taken. I have now lost faith in my rheumy and my GP has written to St Peters in Chertsey for a referral there as advised by kind members of this forum. I can not take mind numbing drugs - I am lucky that the Tramadol does not affect me - as I live and work alone and need to drive to get around. I am trying not to spiral downwards and accept that I may be like this for the rest of my life but at the moment it is hard.

[Celtic PMRGCAuk volunteer in reply to Ida-June128]

Ida-June, with an ESR of 66 and the Pred kicking in within 48 hours, that very much confirms PMR. Even if PMR is either on the wane now or even in remission, I would have thought that the very stress of what you are going through with the fractured femurs would probably be more than enough to keep waking PMR up out of its sleep! I know from experience that it is always more complicated when other conditions muddy the waters. And, yes, if the steroids are working you would expect your ESR to be normal or at least heading that way. I hope your referral for a second opinion comes through soon - make sure the appointment is with the recommended consultant.

[PMRpro Ambassador in reply to Ida-June128]

The gentleman concerned does also do private work - so if the NHS messes about you could try a single private appointment.

The entire physical stress of managing on crutches with PMR cannot be helping - and that could well be why you require 15mg on a permanent basis. What on earth do they mean by "a touch of fibro" - there are so many overlaps between fibro and PMR that the residual problem could merely be some of the PMR. They can't prove fibro, they can't test for it. I'm not sure which was worse: the attitude "fibro isn't a real disorder" or the more common get-out clause now of "it'll be a bit of fibro"

And while you are on 15mg of pred it is highly unlikely that your ESR or CRP would show much at all. In some people they fall once they are on pred and never rise again - no idea why.

I should also have asked - why does he now not think it is PMR?

[IslandShell]

I have had two different rheumatologists become stumped by PMR and try to convince me it is Fibro. I am one whose blood tests remain in the normal range and they just can't wrap their minds around that. Also wrist & hand pain really throws them for a loop. If it wasn't for this forum I might be drinking their Kool-Aid. When I read up on Fibro nothing matches up except for pain & fatigue which when I am permitted to be on an adequate dose of prednisone my symptoms are diminished. Their main concern is to reduce the prednisone as rapidly as possible. Which has caused flares and ultimately slows down progress in reducing the steroids.

I was speaking with my orthopedic physician (recently fractured my kneecap) and we were discussing PMR, he understands PMR better than either rheumy and doesn't feel it should necessarily be treated by rheumatologists. LONG story short he made the comment that Fibromyalgia has become a dump for rheumatologists when they have patients with certain symptoms and they can't get them resolved in their linear fashion.

Best wishes to you Ida-June and beware the Fibro diagnosis.

Merk