Normal labs with PMR pain

[BuddyBearF]

I tapered off Pred about 4 months ago but am experiencing PMR type pain in shoulders and hips and can feel it in knees and elbows and upper arms a bit. My GP says it's not PMR because my labs are normal but I remember this pain...it is in the same places as it was when I was diagnosed. Could it be something else or is it PMR?

[SheffieldJane]

hi BuddyBearF, your inflammatory levels are suppressed by Prednisalone, this obscure’s the true reading. You obviously need to increase your dose. A significant number of people never have raised inflammatory levels on the CRP and ESR blood tests. Symptoms rule here. Those symptoms are pretty distinctive.

[piglette]

You are probably more aware of the symptoms of PMR than your GP. A lot of people find that just after giving up steroids the PMR bubbles up again. A lot of people don't always show inflammation markers.

[Bcol]

Morning, given the symptoms, which you know well, it does sound as if it has returned, if it has only just shown itself, if you still have some Pred it may be worth trying a dose of 2.0mg or 3.0mg just to see if the symptoms disappear again. If they do you can then go back to docs with some evidence. If left, you might end up back at square one again. Have you tried usual pain relief? If that works then maybe not a return of PMR but if it has little effect then you probably also have more evidence to back up your explanation to your docs.

[DorsetLady PMRGCAuk volunteer]

If you think it’s PMR, then it may well be [and probably is] and inflammation markers as we well know on here very often lag behind symptoms… or may not rise at all. Even if they did first time around.

Couple of options -

Bear with it [sorry no pun intended] - and go back in another few weeks - and hope the inflammation markers have increased. Then you can tell your GP he may like to rethink, or

As suggested by  Bcol try a small dose [if you still have some Pred] see if they help, and then you can advise GP, although he may say ‘well they would have helped any pain’.

Do wish they realise its symptoms every time….

[PMRpro Ambassador]

You don't get raised markers until there is enough inflammation present for long enough to trigger the liver to produce the relevant proteins. Four months is a very typical time for a slow build-up of inflammation from a very low disease activity. The GP is being unreasonable to deny it is PMR - symptoms ALWAYS trump lab results.

[BuddyBearF in reply to PMRpro]

Thank you all for the sanity check. You are saying what I've already been thinking. My PMR symptoms were very bearable as I tapered off - but not complete gone. With no Pred for 4 months they have eventually gotten to the point where shoulder pain is interfering with sleep and climbing the stairs at times is becoming difficult AGAIN. I SO do not want to have to go to Pred again though. Aleve does help take the edge off - doesn't completely get rid of symptoms, but I can get around and sleep for the most part. So, next question is, is it possible if the disease is at a low level to manage through Aleve a few times a week? Knock the inflammation down a bit? Or, am I setting myself up to waking up one day and not being able to hardly move like I did when it all started? I was so excited to finally get rid of the Pred...

[Bcol in reply to BuddyBearF]

Sadly it doesn't work like that. The pain killers will not stop the inflammation build up, only Pred will do that. So yes, if you leave it you will be back where first started. A small dosage of Pred at this stage may well be enough to get it under control again and if/when it does, don't rush to try and get to zero again.

[DorsetLady PMRGCAuk volunteer in reply to BuddyBearF]

My PMR symptoms were very bearable as I tapered off - but not complete gone.

😳well that was your PMR reminding you ‘I’m still here’ … and had you not been in such a rush and continued on a small dose you wouldn’t be in the situation you are now.

No option I’m aftraid…

[PMRpro Ambassador in reply to BuddyBearF]

Short answer - no. If it did, no-one would want to be on pred would they? But long term Aleve/Naproxen is also not good for you, it damages both kidneys and gut. It is only meant to be for short course use in acute pain situations. Pred does less damage in that context. And the unmanaged inflammation is also doing damage to the tissues.

If you leave this dripping tap of inflammation, the bucket will eventaully fill completely and overflow - and you WILL be back where you started. If you take a low dose of pred now, you may well get to 1 or 2mg as an ongoing dose - that is often plenty to keep the inflammation under control. Leave it and you could well be back to the start.

[PMRnewbie2017]

Sorry but no. Aleve relieves pain and inflammation caused by prostaglandins . PMR pain is caused by too much circulating Interleukin 6. NSAIDS or Paracetamol don't block IL6. This is why only Pred works for PMR.