Pain with normal (3.7) CRP??

[SheilasPMR]

I was diagnosed with PMR 5 years ago. At that time my CRP was 34. I have since been on and off of prednisone 3 times. I have been now off for almost a year and recently have had a flare-up of symptoms. I was astonished to find out that my CRP is not elevated. Has anyone had the pain and fatigue without the high CRP??

[DorsetLady PMRGCAuk volunteer]

Hi Sheila,

I think you’ll find lots do, but seems strange your was previously, but not now!

[SheilasPMR in reply to DorsetLady]

Thanks, good to know I'm not crazy. Well not on that account anyway.

[PMRpro Ambassador]

Up to 20% of patients with both PMR and GCA never have raised blood markers. Or at least, not outside the laboratory values quoted as "normal range" for a large population of supposedly healthy subjects. It doesn't mean the level isn't raised for YOU. I had an ESR level of 16-18 for some time, still "normal" officially. But my personal normal is 4. And it can change after being on pred.

Has anyone checked your vit D - low levels can mimic PMR. Or the PMR may no longer be PMR - about 1 in 6 find the PMR diagnosis is changed at some later date. It isn't clear whether the PMR morphs in some way or it is just coincidence.

[SheilasPMR in reply to PMRpro]

Thanks for the reply, I do take Vit D, but not sure if it was ever checked, maybe initially. Also I have always had doubts about my diagnosis which was actually "Atypical PMR" and have always wondered if it was going to 'morph' into or be revealed as something else as time went on. Perhaps that is still the case. Who knows with this mystery.

[HeronNS in reply to SheilasPMR]

As far as I can tell from reading the posts on here for several years a large percentage of people are "atypical" according to their physicians! I think that reflects inadequacies of the medical description of PMR, not the idiosyncracies of individual patients. Also I'm sure I've read somewhere there are people whose CRP reduces when they are first on pred, but in later flares the markers do not go up as one might have expected. Sure PMRpro or someone will correct me if I've misread this, but I think this paper addresses the issue (a couple of paragraphs near the end).

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to HeronNS]

I suspect it is because they read the criteria mentioned in various bits of medical literature and fail to understand that they are criteria for inclusion of patients in studies where you require fairly fixed criteria so the results can be compared. There are far wider symptoms in real life. By definition, you would have thought that 50% of patients will be "atypical"...

[SheilasPMR in reply to HeronNS]

Interesting. Thank you.

[clieder in reply to PMRpro]

Glad to see this info. Never knew that D deficiency could mimic PMR. MCV on latest blood work elevated, so rheumatologist asked if I had vitamin and thyroid levels checked lately. Seeing GP soon and will look at D. Was steady on 6 mg pred, then S1 back problems, injections, and cataract surgery, and I'm in a flare right now. Increase now to 20 mg does not seem to totally handle PMR as it should. Very suspicious of D as I've been low before and have been taking 2000 iu. ESR is 18 and CRP 1.7 . While ESR was 67 at diagnosis of PMR with possible GCA in 3/15; never has been above 22 since on prednisone, so those readings say nothing about how I feel. I, too, wonder about morphing, especially when the 20 mg does not perform as expected. Will be much relieved if D deficiency is the only problem.

[PMRpro Ambassador in reply to clieder]

Hypothyroid can also create similar symptoms. And pred suppresses thyroid marker levels - so an apparently normal TSH is not saying your thyroid function is fine - it should be higher...

[Rocketronzy]

Yes I seem good at that. Cos they seem to think I’m fine. Frustrating 😱

[SheffieldJane]

Yes, I think the statistic is 20%. PMR once experienced, never forgotten.

[Peggles]

Relieved to know its not just me! I think I'm have a 'flare' as I'm soooooo stiff from dawn onwards and yet my ESR & CRP were both very low when tested a fortnight ago.

I even tried 15mg of pred yesterday, split 10/5

And yes, I'm on prescription vit D.

I do a task, sit down, walk the dogs, sit down, ride a horse, sit down, fiddle about in the garden, sit down - all very dispiriting and almost wish the fatigue would return!

Feeling pretty lost again.

[PMRpro Ambassador in reply to Peggles]

The pred will keep the ESR/CRP low - but every morning the new lot of inflammatory substances is shed in the body and until the pred takes affect you will feel the effects of the inflammation. The ESR/CRP usually take some times to react to the presence of inflammation so will stay low despite that short period in the morning. It is POSSIBLE that if the blood sample were taken DURING that period the ESR MIGHT be raised - but I doubt it.

[Daisychain12]

Dear Sheila and all. I am

Atypical. My very low esr and cpr (?) have led my docs down the garden path and prevented me being diagnosed years ago. Now we know I am to be clinically assessed ( only on symptoms and drug reactions) it is better. My dramatic response to pred on the crippling pain was jaw dropping. My further relief from head pain and tenderness when put on higher dose underlined my probable GCA diagnosis. Neither were diagnosable by bloods. Please keep being assertive. You know how you feel. Speak up. They will listen if you are concise and unemotional which isn’t fair really. Good luck. Pls update. We have to help each other xxxxx. Linda xxxxx