No Elevated Sed Rate or C-Protein Still PMR?

[dp5wheels]

I have every single one of the major symptoms of PMR and without a doubt, I was almost 100% sure my sudden onset of stiffness/pain was PMR. A rheumatologist did blood tests with all those tests, including Sed Rate and C-Protein coming back as normal. RA tests were also in the normal range. Has anyone else had this (where blood tests were in the normal range but you still feel you have PMR?). Thanks for any responses.

[DorsetLady PMRGCAuk volunteer]

Studies have shown that between 7-20% of patients don’t have raised markers… which is why we always say - follow the symptoms.

[dp5wheels in reply to DorsetLady]

Thanks so much for the comment. Following the symptoms is exactly what I have been doing and that seems at odds with the clinicians I am seeing. So I will continue to work on my health with a high confidence that I am managing PMR. Thanks Again

[DorsetLady PMRGCAuk volunteer in reply to dp5wheels]

Unfortunately, some don’t read the small print…😊

[PMRpro Ambassador]

Up to 1 in 5 patients with a PMR may have blood inflammation markers that are "within normal range". In some cases that may mean they are very low but in others they may run at the higher levels of "normal range" but they may be very raised for them. My ESR ran at 16-18 for weeks during a severe flare when I could barely move but it elicited no concern - which it should have as MY normal ESR is in low single figures.

Many doctors don't understand what "normal range" means - it is the range of results found in 95% of a large cohort of nominally healthy adults. That is the definition - and by definition, that means 5% of healthy adults are not within that range. It is also not a range of readings that is OK for a single person to have, it is compiled from thousands of subjects, some have low levels, some have higher levels and some are in the middle. That is how the famous bell-shaped curve is compiled. My normal is low, my neighbour's is higher and the chap across the road is higher still - but that's fine.

You are not alone and there are plenty of articles in the medical literature saying it:

journals.lww.com/md-journal...

emedicine.medscape.com/arti...

With the availability of PET-CT, patients with normal range markers are increasingly investigated and then shown to have the typical inflammation patterns found in PMR.

[dp5wheels in reply to PMRpro]

Thanks PMRpro for your response. This was very helpful and I wondered why the rheumatologist did not do a ultrasound or MRI to confirm bursitis, etc... Took me three months of waiting to see the rheumatologist and it wasnt very helpful so I appreciate your response. Thanks again

[PMRpro Ambassador in reply to dp5wheels]

I wonder too - maybe they are scared of being found out in being wrong?

[Rynn33]

Hi I had sudden onset PMR with the classic symptoms but for the first 3-4 months of it my CRP and ESR were within “normal” range. However they did slowly rise to eventually 30 something around 4-5 months and my symptoms became more severe. So I think they can lag and also to PMRpros and DLs other points, people differ. I got prescribed the Pred then and it relieved 80% of symptoms quite quickly- some doctors will try it as a test so might be worth negotiating- mine wouldn’t give it initially as it might have masked other causes as I was early 50s.

[dp5wheels in reply to Rynn33]

Thanks Rynn33 for your response on this. This is definitely all new to me as I have always been healthy, never had any major health issues so this was a shock to the system. I hear so much bad about steroids/pred that I am just staying away from it all and trying to see if I can manage this through good diet, exercise, etc... Thanks again for your input....

[DorsetLady PMRGCAuk volunteer in reply to dp5wheels]

I hear so much bad about steroids/pred

That's the problem, they do get a bad rap... but they do a lot of good as well.. ask anyone who has already lost sight in one eye through late diagnosis of GCA , and the Pred saved the other one! Or those with PMR who were virtually bedbound previously.

Plus you should be aware that untreated inflammation can do a lot of damage... so keep an open mind. If you can manage with Pred then fine... but not many can.

[ShinglesbeDamned]

My SED rate was 30, but as has been mentioned here, that was high for me. My GP wasn’t having it that I had PRM though I knew I did (I have 2 sisters with it) and she was most indignant about it when I paid to get privately diagnosed.

I was also told by the rheumatologist that the life span of a red blood cell is 3 months so if it was a sudden onset, your bloods may not be showing the inflammation yet.

Many variables to consider in a diagnosis and a stubborn GP is no help at all.

[dp5wheels in reply to ShinglesbeDamned]

Agree...my GP thinks it is my Thyroid because I had an elevated TSH level but my T4 was perfectly fine. They think my symptoms are related to Hypothyroid but that can't be because all my symptoms are the opposite of Hypothyroidism (I have significant weight loss not weight gain, etc...). Just crazy stuff. Thanks for your response

[Aqua47]

Yes, my test results were normal when I was first tested. But I had been on pred for about 10 days, prescribed for me by the orthopedic PA when she saw me for the terrible pain I was having in my shoulders. My primary dr tested me, but sent me to a rheumatologist. The rheumatologist doubted that I had PMR because of my results. But still told me to continue the prednisone. I’m not sure what he thinks I have???

[PMRpro Ambassador in reply to Aqua47]

Obviously struggles with why pred is used for inflammation!! Of course your results could be normal after 10 days on pred!!