PMR Diagnosis

[bmaschino5]

Can I be diagnosed with PMR if I have all of the physical symptoms, but normal bloodwork?

[Richnroo]

So far my bloodwork is normal too and that’s what my doctor is calling it. You’ll get lots of good advice here.

[bmaschino5 in reply to Richnroo]

I’m hoping my rheumatologist calls it PMR as well. My PCP put me on 40 mg, then 20 mg. for only 18 days. Worked like a charm. Then the symptoms returned and she put me on 5 mg and referred me to a rheumatologist. 5 mg isn’t helping at all so I’m hoping the rheumatologist increases the dosage in spite of my normal bloodwork.

[Richnroo in reply to bmaschino5]

I’m waiting to see rheumatologist too. Hoping he agrees with my GP. One main thing I’ve learned from this forum is to not allow myself to be forced off the prednisone. I’ll stick with my GP if needs be.

[PMRpro Ambassador in reply to bmaschino5]

What on earth is the point of giving you 5mg? Like giving antibiotics for a viral infection ...

[bmaschino5 in reply to PMRpro]

Don’t know! Does nothing to ease the pain.

[piglette in reply to bmaschino5]

That is because the dose is much, much too low.

[SheffieldJane]

Yes. About 20% of patients have normal bloods. Diagnosis tends to be on symptoms and response to Pred.

[PMRpro Ambassador]

Up to 1 in 5 patients (20%) with PMR and GCA have blood markers that are in normal range. That doesn't mean they aren't raised for them personally though: the range for ESR, for example, is 1-20. My normal is low single figures, about 4. It ran at 16-18 during a severe flare but no medics remarked on it because it was still "within normal range". Normal range isn't a range for a single person, it is a range for a large population of apparently healthy people. You may be at the top or the bottom of that range - or anywhere in between.

PMR is a clinical diagnosis, made on the basis of the signs and symptoms and exclusion of other potential causes of the symptoms. The blood markers are only one factor - and for some reason some patients don't "mount the acute response" as the medics put it so the blood tests are inconclusive. I have normal range blood tests - but nothing else has been identified so, it remains as PMR.

[bmaschino5 in reply to PMRpro]

Thank you for your response. Other than telling me I have no markers in my blood to indicate inflammation and keeping me on 5 mg of Prednisone, my rheumatologist has not been very helpful. I have an appt in 3 weeks to discuss things further. Meanwhile I’m still in pain.

[PMRpro Ambassador in reply to bmaschino5]

Of course, being on 5mg pred may be enough to suppress the blood markers even if it isn't enough to manage the symptoms.

I know I worked in the labs - but some of the ideas some medics have about the significance of blood tests does worry me! One friend was told repeatedly that the grossly abnormal immunoglobulin results that they were getting were "lab error". If that was the case - why order them in the first place? And it turned out she has a severe immunoglobulin deficiency - which could have killed her had she got an infection ...

[bmaschino5 in reply to PMRpro]

In May my SED rate was 31. Since then I have been taking 5mg of Prednisone while awaiting an appt with a rheumatologist. I had bloodwork done on July 20th and the SED rate came back as 1. I am still in a great deal of pain. Does the change make sense?

[PMRpro Ambassador in reply to bmaschino5]

As I say, 5mg may be enough to prevent the acute phase response developing and so the ESR falls. And a lot of doctors think if there is no sign in the bloods then the patient can't need more pred. I prefer one who treats the patient not the lab results!

[bmaschino5 in reply to PMRpro]

Thanks again. I apologize for repeating the same questions. This is all new to me. I have been in pain since March and I thought the blood tests would confirm PMR and my rheumatologist would increase my Prednisone and I would be feeling some relief by today. Is it significant that my older sister had PMR 10 years ago?

[PMRpro Ambassador in reply to bmaschino5]

Possibly - they do see clusters in families but there isn't a direct genetic link, it isn't hereditary in that sense but the genetic history is also a factor.

No apology needed - everyone new is in the same boat

[bmaschino5 in reply to PMRpro]

Thank you! You have been so helpful!

[Kendrew in reply to PMRpro]

I'm same as you...bloods have always been within normal parameters. Can make you feel a bit confused though can't it, till you realise that can happen.

[PMRpro Ambassador in reply to Kendrew]

Probably - except having worked in the field I'm probably more aware than the average doctor who takes lab values as gospel!!!!

[Kendrew in reply to PMRpro]

Exactly. Unfortunately for me, being a nurse gave me lots of experience in many things but sadly, not PMR. I'm learning so much though now and it's so helpful.

[PMRpro Ambassador in reply to Kendrew]

If nothing else though I imagine you won't make a common mistake amongst nurses, even rheumy nurses - confusing arteritis and arthritis!!!

[Kendrew in reply to PMRpro]

Haha! Absolutely not. You're so right in what you say there though.. ..so many of my friends and colleagues in school(I'm no longer a nurse) think it's arthritis and I have to explain things to them.

[Grammy80 in reply to PMRpro]

I wish I could post this in a USA medical journal....🙄🙄🙄🙄

[SnazzyD]

I know I just had GCA but even when my eyes were shutting down my bloods were normal as per the usual range but I knew the ESR was high for me, being 16 instead of 4.

[Jackoh]

Seems to be cropping up more and more:- “Your bloods are ok therefore you haven’t got PMR “ or “ Your bloods are ok therefore you haven’t got PMR any longer so reduce quickly “ I wonder if it is because the Consultant Rheumatologists/ GPs are so badly informed or that with this COVID they are trying to get folk off steroids as quickly as possible, regardless. I have GCAPMR and apart from one occasion when I had an infection, I have always had normal bloods. Possibly though not normal for me but as we don’t have these tests before we develop these conditions we will never know.

[bmaschino5 in reply to Jackoh]

I’ve been underwhelmed by my rheumatologist’s response to my symptoms. The bloodwork had no markers for anything and I haven’t gotten the results of my x-rays yet, so his instructions are to stay on the 5mg/day dosage until he can see me after he’s gone on vacation for a week. Of course the 5mg does nothing for me. I’m not sure he believes the symptoms I’ve explained, or my previous positive response to 20mg of Prednisone. Depressing!