PMR burned out? How do you know

[Phoebenooby]

I have never showed inflammation in my blood. I have had a PET scan which showed the inflammation, so I know I have PMR! I had the PET scan as I developed blocked arteries at a similar time to the PMR starting but the vascular team are unsure why as I have no plaque or any other blockages. I have had PMR for 19 months , been on pred for almost 12. I know that PMR hopefully will burn itself out after 2 years …. If you are still taking pred how will you know if it’s gone? I only ask because if I am late taking my pred I never get any extra aches etc so I wonder if the PMR is still there? I’m sure it is and I’m wishful thinking , but does it ever go before you get down to 0?

[SnazzyD]

You won’t know until you are off Pred for a number of months without symptoms. It may take a wee while for inflammation to build up again to a level that makes you know it’s still there. If you have a level of autoimmune activity that doesn’t cause symptoms within 24 hours of being off Pred you may well feel ok. For how long is anyone’s guess.

[PMRpro Ambassador]

Once you are off pred for about 6 months without any problems you can usually say it is gone - but not forgotten because your immune system probably doesn't forget and it CAN reappear up to years later. And yes, it may have gone before you get to zero but you can't just stop the pred because the last 5mg is as much about adrenal function as it is about PMR. The only certainty is that you won't get off pred successfully unless it is burned out and in remission.

But I'd advise forgetting the 2 year myth. There ARE people who get off pred in 2 years - I was reading the story of someone this morning who only needed pred for 2 years - but while there are varying opinions in studies, probably only about 1 in 3 get off pred by 2 years. Maybe half of patients are off pred by just under 6 years. But about 40% of patients are certainly on pred for longer than that, albeit at a low dose, well under 5mg. 1mg can be plenty to keep the inflammation out of sight, or feel, but zero turns out to be a step too far,

And as Snazzy says - if you have a good buffer with the current dose, it can take weeks for enough inflammation to build up again to be enough to cause symptoms. If you are someone where the markers actually mean something, you may see the ESR slowly creeping up showing something going on in the background.

Has your ESR changed at all while on pred? Sometimes it can still be within the "normal range" but very raised for you - my personal normal is about 4 but during a flare when I could barely move, it ran at 16-18. It is all about context and trends. "Normal range" is based on the range of readings found in a large population of nominally healthy subjects and is the section of the bell-shaped curve that includes 95% of those readings. 2.5% are below, 2.5% are above that range - but still perfectly OK.

[Phoebenooby in reply to PMRpro]

thank you. I don’t understand the ESR numbers! I had my first test for PMR November 23, was told it was normal and I didn’t have PMR, begged for Pred end of January 24 and although the blood test was still normal they did give me the pred! Here’s my results

Test results

[PMRpro Ambassador in reply to Phoebenooby]

It is just a very non-specific indicator of inflammation - NOT specific for PMR but for inflammation anywhere in the body. But it does tend to be quite a good indicator in showing trends during PMR although it is also true that up to 1 in 5 of patients with GCA/PMR the ESR remains low or within normal range if it raised for them.

Tell you what - that November 23 result is NOT normal to anyone who knows what they are talking about!! It was absolutely at the top end of what you can stretch the range to be for an older woman based on out-dated opinions. These days it is accepted that if it is above 20 then it is very likely something might be wrong - and when it comes with symptoms, definitely. Even when you take that as OK-ish, in someone with symptoms it is a level that needs thinking about. What was it in the January? It isn't listed.

[Phoebenooby in reply to PMRpro]

The reason the January 24 test isn’t listed is because it due to tech probs is wasn’t available! Just listed as normal on my results!

Test results

[Phoebenooby in reply to PMRpro]

Is this related to PMR?

Test

[PMRpro Ambassador in reply to Phoebenooby]

Yes - was the CRP also listed as normal in November? It doesn't given their lab range in either and that is a bit naughty. I'd say the 7.1 was high but don't know without the context.

[Phoebenooby in reply to PMRpro]

Yes listed as normal ….

Test results

[Phoebenooby in reply to Phoebenooby]

According to this it wasn’t normal!

Tests

[Phoebenooby in reply to PMRpro]

this is the message I got,

Tests

[PMRpro Ambassador in reply to Phoebenooby]

I'd be making waves. Because whoever approved that for a patient being investigated for PMR needs some retraining...

[Phoebenooby in reply to PMRpro]

I rang them end of January 24 in tears and said I couldn’t carry on… that’s when they gave me the steroids as I begged for them. They did another blood test which they said was again normal. I had been in agony since June 23…..

[PMRpro Ambassador in reply to Phoebenooby]

Appalling. I had 5 years like that because I had normal markers. But actually, you had a raised CRP that they ignored and a very borderline ESR. The 2, together with your symptoms, should have been plenty.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, you need someone who understands blood results… and even if there weren’t outside normal ranges..they should be taking notice of symptoms. And please don’t fall into the trap that PMR will be gone within 2 years.. it may be so for some, but certainly not all.

[Phoebenooby in reply to DorsetLady]

Thank you, I will keep my fingers crossed for a smooth journey! 🤞🏻