ESR and CRP normal - is damage still being done to my blood vessels?

[PurpleNDH]

Hi Gang!

I'm still waiting for a diagnosis so am not on any medication as yet but seem to be improving VERY slowly and really don't know what to make of it.

Back in June I had bilateral stiffness, aches and fatigue and my GP suspected PMR. My CRP was normal and my ESR 57. There were some aspects that were atypical and my pain levels low so we held off doing anything for a few weeks and in that time my stiffness improved hugely and my ESR dropped to 40. We've still taken no action (though I have a Rheumy appointment for early November) and my ESR this week is now 20 and classified as normal. (My normal back in 2017 was 5 though.)

My mobility is much better than it was but the improvements are at a snails pace and I still have unexplained stiffness and pain that make me feel 20 years older than I am.

I can cope with that, knowing that I have a Rheumy appointment coming, but I also know that 20% of PMR cases have no abnormal blood work so my raised ESR could have been a red herring?

Does that mean that inflammation of the blood vessels can still be happening even though the blood tests are "normal"?

I hope that ramble makes sense!

Thanks!

[PMRpro Ambassador]

No way of knowing at all - there seem to be differing versions of PMR - after all, PMR isn't the disease itself, it is the name used to describe a set of symptoms that are due to an underlying cause. There are several (at least) which have no link at all to what is assumed to be very similar to if not the same as the autoimmune vasculitis that causes GCA.

There is a short term form of inflammatory arthritis called reactive arthritis which occurs in response to infection - and there is some thought there may also be a version of PMR that is also in response to a short term trigger. When that is either treated or burns out - the PMR symptoms also disappear. The ESR is very non-specific - all sorts of things will send it up, not just PMR.

If you can manage without pred as you are at present, I would try to manage until you see the rheumy. That does let them try various imaging without pred interfering. I had PMR for 5 years without being diagnosed - 11+ years later I'm still alive and they didn't find anything nasty lurking when I had all sorts of investigations 6+ years ago for atrial fibrillation. Doesn't mean there isn't of course!

[Mota1 in reply to PMRpro]

Hi

I have read many of your replies to posts and have learned so much from you and the site in general. Thank you for all your time and effort.

I was diagnosed with polymyalgia some three months ago, though my blood tests showed normal inflammatory levels. A 20mg Pred took all the pain out in a few hours.

What I cannot understand is what the Pred is doing as I keep reading that its action is as a powerful anti inflammatory. How did it work in my situation. I have been rapidly reduced to 10mg in steps over the three months with a view to a much slower reduction in future.

By the way, I am male and I read somewhere that, in general, male response to treatment can be different from female. Is this correct?

Thank you again for all the knowledge you share with us.

Ps. I am also being tested for ectopic heart beats. I assume this is not related to the prednisilone.

[PMRpro Ambassador in reply to Mota1]

Don't really follow you - are you on pred or not? If you are on pred then it should be the case that the symptoms are better and the blood markers fall. The pred clears out the inflammation which is what causes the symptoms - just like any inflamed area is sore. 10mg pred is enough for most people, for some it even works right from the start although a higher dose is more usual. For some people even 1mg pred is enough.

You start on a dose that is likely to be enough, increase it a bit if it isn't, but then as the existing built up inflammation recedes you should need less and less: you are looking for the lowest dose that manages the symptoms by clearing out each day's new dose of inflammation. The body sheds the inflammatory substances every early morning about 4-4.30am and without pred you would have the symptoms again, for some people the pred does not exert its effect for over 24 hours and so they still have morning pain.

[Mota1 in reply to PMRpro]

Thanks for your response and apologies for not being clear enough. I am on prednisilone as described in my note (20 mg initially, then 15, then 12.5 now 10 and to be reduced 1mg/ month to be more precise.) My blood tests showed normal inflammation levels before taking Pred. So, the question is what is the anti inflammatory effect of the Pred if my levels were normal before starting on the course? Many of the posts state that the purpose of Pred. is to control inflammation. But mine was already controlled. So why did it work?

Thanks

[PurpleNDH in reply to Mota1]

Yes, I’m wondering the same thing.

[PMRpro Ambassador in reply to Mota1]

No it wasn't necessarily - no inflammation would have meant no symptoms. Some people don't have the reaction that makes the liver produce extra proteins in response to the inflammation that makes the blood tests go up. So symptoms always trump blood tests - treat the patient, not the lab numbers!

But the "normal range" is found by testing 10,000 or so apparently healthy patients of all ages and then you take all those results and plot them on a graph - and the normal range is the set of numbers that covers 95% of the population. So some people have low levels, some have high levels - and there are a few who are outside those numbers altogether. My normal ESR is low single figures, the top of the range is 20 so it can run at 18 or so and most people would look at it and say it was normal but in fact it is very high for me.

[PurpleNDH in reply to PMRpro]

That makes sense - thank you! (And for your initial reply to my message.) I guess very few of us ever know what our own personal "normal" is because it only gets measured when we have problems. If some of us don't produce the response at all then that doubly clouds the issue. Thanks so much for your help.

[Mota1 in reply to PMRpro]

Thank you for that response. As PurpleNDH says we rarely know our personal “normal”. It also suggests that there might be an individual response to Pred. and, indeed, proposed tapering programmes.

Thank you again

[Hidden in reply to PMRpro]

Thank you PMRPro for this helpful clarification with regards to blood tests (mine were also normal). Has helped my understanding 🙂