Diagnosis?

[FreeWolf]

I'm in my 70's, female. I had typical PMR symptoms but my bloodwork was normal. Due to a delay in seeing my GP the blood was taken during a period of diminished symptoms. Do other people find that this disease can wax and wane or is it a condition that worsens without reprieve?

[PMRpro Ambassador]

I certainly find it waxes and wanes - and have often said that if you were to plot disease activity over time it would form a sine wave with (generally) ever diminishing peaks. As a result, you may be able to reduce the dose on a downward phase only to find you are in a flare as it enters an upward phase! That is why we are adamant that fast tapers can lead to a great deal of confusion about dose required and slower tapers tend to avoid the problem better.

However - normal range markers doesn't mean it isn't PMR - up to 20% of patients have been seen to have markers that are not elevated out of the "normal range" though that doesn't mean they aren't elevated for them. Mine bumbled along around the 16-18 mark for ESR during a major flare when I could barely move - no-one remarked on it, But my personal normal ESR is in low single figures. "Normal range" isn't a range that is acceptable for any single person - it is the range that covers 95% of nominally healthy subjects, each having their own "normal" and 5% are outwith that range anyway. But too many doctors missed that lecture at medical school ...

[FreeWolf in reply to PMRpro]

Thank you for your information. It does seem to be a condition that has a mind of its own.

[PMRpro Ambassador in reply to FreeWolf]

That is the polite way of saying it ...

[readingbooks in reply to PMRpro]

How do we know what our personal normal range is, PMRpro ? I have only been tested for CRP and ESR since I have had PMR ?

[DorsetLady PMRGCAuk volunteer in reply to readingbooks]

You don’t - that the problem, they aren’t things that are monitored on a regular basis…

[readingbooks in reply to DorsetLady]

Agreed, and that is why I asked. PMRpro refers, above and not for the first time, to knowing her personal normal . It really would be helpful if there was a way of knowing !

[DorsetLady PMRGCAuk volunteer in reply to readingbooks]

You can get them tested privately, but if you were in good health normally why would you see the need ? 😉

If you are wealthy enough [or lucky enough under employment t&c] have private healthcare they may be done at annual healthcare check…

[PMRpro Ambassador in reply to readingbooks]

The lowest level you can get to when on pred is a fairish guide - it has removed all the PMR-related inflammation.

[readingbooks in reply to PMRpro]

Thank you to you and DL. It was curiosity that made me ask the question !

[Bramble2000]

In my experience of PMR for about 3 years now, my symptoms have remained exactly the same. X

[Bramble2000 in reply to Bramble2000]

But I’m not taking steroids so might be different for me.

[WaltzG in reply to Bramble2000]

Hi nor am I . What are you taking?

[Bramble2000 in reply to WaltzG]

Nothing. You?

[WaltzG in reply to Bramble2000]

Hi I take methotrexate which really helps but I think doesn't help everyone. Good luck

[PMRpro Ambassador in reply to Bramble2000]

In the five years I had PMR and wasn't on pred, the symptoms just got worse and worse until they reached a plateau of awfulness.

[Bramble2000 in reply to PMRpro]

Yes, exactly that

[sidra1968]

I think it waxes and wanes

[Gimme]

Definitely waxes and wanes. I think mine is waxing atm, unfortunately.

[AtopicGuy]

From experience, and what I've read, waxing & waning is common to all autoimmune conditions. When the 'waxing' is severe, it's called 'a flare up'. When on the wane, it's called 'remission'.

According to the NHS (see link below), PMR symptoms should last at least two weeks before a doctor considers making a diagnosis.

nhs.uk/conditions/polymyalg...

[FreeWolf in reply to AtopicGuy]

Thank you. Your advice makes sense. Thanks for the link.