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! 🤞🏻

[Chiqui1950 in reply to Phoebenooby]

Dear Phoebenooby, It is great that you have your results from your ESR and CRP. Their results were also new to me--- but after a time I have come to understand the results from these tests and they have informed my Doctor and me as to what to do next, increase, decrease or stay put with my pred dosis. I am at 3.5 and managing PMR since 2020. If I have pain and my CRP is 7--- something significant is happening and I would most likely need to increase my pred---- if all is well with no symptoms or very slight my CRP is usually 1. I have to agree with PMRpro and DorsetLady's wisdom and experience shared. Thank you so much for sharing--- I learned from your sharing! All the best to you!

[JeremyNZ]

Some good answers here. I thought PMR had gone. I was sure. But as a I got down to 6mg pred for a few days, all hell broke loose. It was the same as my original attack 16 months earlier. I had to go back to 20mg pred to contain it. Now new tapering has begin. I will stop at 7 if I can.

[Missus835 in reply to JeremyNZ]

That is where I'm at right now and pain is excrutiating. GP will not let me up the pred, but last night I upped it to 10 and will for the next week and if I run out, I will probably end up at ER becx the pain is not tolerable.

[Chiqui1950 in reply to Missus835]

Dear Missus835--- I hope you feel better soon!! yes!! going down and then up is hard--- but I am learning to accept that I do the best I can and recommit listening to my body as it guides me (and my doctor) to the next step--- even when I would like to go faster (sometimes to my own detriment)--- but you are listening to your body and that is good--- may you find the right doctor that can support you in your recovery and management of PMR

[DorsetLady PMRGCAuk volunteer in reply to JeremyNZ]

As we’ve said before, at16 months highly unlikely PMR gone… and 6mg there is no way anyone can tell..no matter how long you’ve been on the Pred..

Taper more slowly this time…just to be sure… and what do you mean by -I will stop at 7 if I can.

[JeremyNZ in reply to DorsetLady]

Hi. I seemed fine at 7mg and now I wish I’d just stayed there. I was tapering at half a mg a month. I have heard that about 7mg or perhaps a bit lower your adrenal system starts to wake… and when you find out if it’s still misbehaving. Which mine sadly was. Now I just have to get from 15 back to 7. Again.

[DorsetLady PMRGCAuk volunteer in reply to JeremyNZ]

This link explains about adrenals -and the significance of the doses around 7mg.

healthunlocked.com/pmrgcauk...

But adrenals stuttering and a flare of your illness aren’t the same thing nor necessarily connected.. so you need to be able to work out the difference.

As we say many a time -once you get to around 7mg a slow taper will help both your adrenals and your illness.

And, at the risk of being boring and saying something you don’t want to hear.. at 16 months in -there really is no rush…

[JeremyNZ in reply to DorsetLady]

Thanks! It's all rather frustrating. No one wants to be.... sick.

[DorsetLady PMRGCAuk volunteer in reply to JeremyNZ]

We know no one wants to be sick… but sometimes you are .. and all we are saying [from a personal view as well as advisors on this forum] you have to learn to manage your illness to get the best QOL for you.

No-one is saying that is easy and yes it is very frustrating at times… but much of how your illness progresses is in your hands as well as your doctors.

As.i said previously I had 4 and a bit years on Pred [maybe it could have been slightly less had I tapered more quickly, but I don’t know].

But what I do know is that I never flared although for 9 months when late hubby was very ill and subsequently died I hardly tapered at all, but my GCA was fully under control and I had good QOL and could do most everything I wanted to.

I had a very traumatic time before diagnosis - so I viewed Pred if not as a close friend at least a great helper - and so did my doctors.. which made all the difference.

Your illness is not going anywhere soon, so you have to learn to live with it -for the moment. It will go away, but when it’s ready…

[PMRpro Ambassador in reply to JeremyNZ]

It isn't adrenals misbehaving that causes PMR - but being on higher pred doses means they do not need to produce cortisol until the pred dose is below 7mg or thereabouts. And that doesn't start working smoothly but with a few stutters and starts.

[Chiqui1950 in reply to JeremyNZ]

Ohh I do understand--- I have been there too more than once--- and that sometimes it is really hard to know what is the right thing to do!! but there is hope and it is the training of patience for me ---