Why we have a low ESR reading and pain from PMR

[Dorene]

I think I have found out why I am having low ESR reading when I am having recurring pain from PMR/GCA.

Some of you may remember me being referred to an Immunologist at Addenbrooks in July. Sorry I didn't report back but I have been so busy, I have been nursing my Husband who has been ill. Nothing much happened at that first appointment, just questions about the progress of my illness and then blood tests, it was suggested, as my immune system was so low I should have a Pneumonia jab and a Meningitis one too, then a blood test one month later.

My second visit proved much more informative. I was told my Haemoglobin was low, it should be between 6 and 16 and mine had been 4 for over a year, they couldn't understand why I had not had an infection during this time and were worried my body would not be able to fight one, however the two immunisations had brought it up to 5.9 which they were quite happy with at the moment. Then the revelation, the immunologist said, of course if your Haemoglobin readings are down you can't rely on your ESR readings being true as they will be down too, so if your ESR reading goes up one point, take that as a warning. Has anyone else heard this. My preds are down to 4.5 at the moment but struggling for the past two months, would like to put them back up to 5 but my GP wants me off them asap. Good luck to you all, hope this little bit of information is of some help. Dorene.

[PMRpro Ambassador]

It may be something they have noted - but I have never had a raised ESR or CRP in the entire 10 years I have had PMR. And in that 10 years I have never had a haemoglobin level that is under 16, it is more often nearer to 18. For much of those 10 years I have spent several weeks of the year at our appartment at just over 800m but that isn't really high enough to account for the high Hb being due to altitude.

And as i keep saying - it is all very well for a GP to tell a patient that they want them off pred asap, but if the underlying autoimmune component of PMR is still active you are just asking the patient to suffer the PMR symptoms again so why did you bother offering them pred in the first place? How fast have you been reducing? Many doctors like to keep their patients at 5mg for several months and this then makes the rest of the reduction easier since the body has (probably) had tome to catch up with making its own natural corticosteroid.