Feel like a fraud..

[Ellibeth10]

My doc has done 2 blood tests over 6 wks.' and informed me after the first test that my results show I have PMR and wanted to put me on Pred. After finding this website and reading through posts I am not convinced I have this illness. I am in pain yes, I have shoulder/arm /neck/hip pain which was my main complaint to the doctor but I don't feel I am in that much pain that I need long term steroids. I can cope with painkillers. I am still getting out doing things I would normally do. I looked back on my health record and noted that I first complained about similar problem in 2021 doctor suggested physio so I booked in with a private physio for weeks but returned to her twice in 22 and 23 ? with same shoulder/arm pain .I am wondering if I do have PMR did it start then. I have the results of my latest blood test and the ESR has risen from 27mm to 34mm plasma c has gone down from 8 to 5 but not seen doctor yet to explain latest result, appt is Thursday when I will have to make a decision . I read about others terrible experiences of PMR and I do feel like a fraud.

[DorsetLady PMRGCAuk volunteer]

You could always try a trial of Pred - so long as not more than 3 weeks you can stop it with no problems. That might give a better clue.

As you say it might be PMR, it might not. But if it is, leaving it may means it gets worse over time… if it not’s PMR, then I’d want to know what it is….have you had X-rays or any other tests. A raised ESR just shows inflammation, not the cause… and it’s not way high, compared to some.

[Ellibeth10 in reply to DorsetLady]

Thank you for replying. No haven't had any other tests. I really don't know what is high for the blood results. Looking back to when the pains started in 2021 my results were 48mm and 11mm. I too need know the cause of the pain. RA runs in my mothers side of the family which is what I initially thought it was.

[DorsetLady PMRGCAuk volunteer in reply to Ellibeth10]

This gives an idea -

ESR & CRP Ranges

The problem is, as individuals, we don't usually know what our normal is as it's not a test that is done when you don't have anything wrong. Some people's are a lot lower normally than the averages stated.

The thing to be concerned about in PMR or GCA is a number of escalating readings. A one-off reading can sometimes be just that - a one-off, and related to something other than your illness.

ESR

Sed rate, or erythrocyte sedimentation rate (ESR), is a blood test that can reveal inflammatory activity in your body. A sed rate test isn't a stand-alone diagnostic tool, but it can help your doctor diagnose or monitor the progress of an inflammatory disease.

When your blood is placed in a tall, thin tube, red blood cells (erythrocytes) gradually settle to the bottom. Inflammation can cause the cells to clump. Because these clumps are denser than individual cells, they settle to the bottom more quickly.

The sed rate test measures the distance red blood cells fall in a test tube in one hour. The farther the red blood cells have descended, the greater the inflammatory response of your immune system.

Averages (based on 1996 study)

Age 20. Men 12, Women 18

Age 50. Men 14, Women 21

Age 90. Men 19, Women 23

Another study shows slightly difference values -

Age under 50. Men 0-15, Women 0-20

Age over 50. Men 0-20, Women 0-30

CRP

C-Reactive Protein (CRP) is the most sensitive acute phase protein and is the assay of choice in most situations when detection or monitoring of the acute phase response is required. CRP is specific for the acute phase response and unlike ESR is not elevated due to other causes. It has a rapid response time and will rise within two hours of acute insult (surgery, infection, etc.). CRP has a short half life (8 hours) and should peak and begin decreasing within 48 hours if no other inflammatory event occurs. It's catabolism is not affected by the type of inflammation.

Reference range

Adult: less than 8 mg/L

Up to 1 month: less than 6 mg/L

Most patients (90%) without organic disease have CRP levels less than 3mg/L and 99% have levels less than 10mg/L. Neonates are unable to induce CRP synthesis to the same extent and the neonatal reference range is lower.

Slightly higher CRP levels may be found in pregnancy, but any increase is usually within the reference range quoted.

From Patient uk 2018

ESR: the normal range is 0-22 mm/hour for men and 0-29 mm/hour for women. CRP: most people without any underlying health problem have a CRP level less than 3 mg/L and nearly always less than 10 mg/L.

[Ellibeth10 in reply to DorsetLady]

Thank you .

[Hidden in reply to Ellibeth10]

Hello, I also have RA running through my mother's family. That is what I was initially tested for. It was a negative result that led to the PMR diagnosis. I feel as though I am wading through cold rice pudding at the moment 🙄

[Sungolfer]

hi and good luck with your appointment and decision as to taking Pred or not.

I started my Pred journey last October at 15 and am now down to 5. My experience with pmr seems to be easier than many posts I read on here. When I was first diagnosed I was in considerable pain which had escalated from specific niggles in neck, shoulders, thighs etc which I put down to being active and 77. However it became much more than a niggle and I had to lift my legs out of bed and was unable to stand up straight or bend over fully with very painful biceps. Crp was 64 Steroids sorted me out in 24 hours! Since then I have functioned completely normally and feel so sad and sorry for people who are so affected by this disease and for years. I guess like with everything people are affected differently- my energy levels are still high - dog walking, golfing, gardening etc etc. I have little niggles occasionally but feel very fortunate compared to so many here - so don’t consider yourself a fraud - just lucky not to be so debilitated. My Dr whilst very good is also very keen to reduce and does not subscribe to years and years of taking Pred - but he doesn’t have PMR! Good luck

[Palgeo]

In my experience, you should be referred to a rheumatologist before being prescribed prednisolone. The consultant will do an ultrasound scan which can confirm PMR. Blood tests show inflammation but this may not be from PMR. Insist if you can.

[Ellibeth10 in reply to Palgeo]

Thank you.

[Elvied in reply to Palgeo]

What ultrasound scan can confirm PMR. I was told it couldn’t be confirmed by bliss’s or scans

[PMRpro Ambassador in reply to Elvied]

I just lost this reply - so here's another attempt!!

clinexprheumatol.org/abstra...

Click on the PDF ikon to download it and be able to read about ALL the imaging options that are of use, including ultrasound and PET-CT

[proactive]

PMR presents differently in everyone, so don't feel like a fraud. Remember, many of the people who post here are having difficulties, the ones who breeze through quickly with a course of prednisone don't feel the need to post or ask questions. A short course of Prednisone, if effective to relieve symptoms could help pin down a diagnosis.

[AtopicGuy]

It all comes down to quality of life (QoL). Most sufferers are so ground down by the pain and stiffness, they are desperate for anything that might help. Then they find that prednisolone really helps, and some of their QoL comes back. Those with milder cases probably never go searching for a Forum.

If you are content with your QoL, while managing your symptoms without steroids, feel free to stick with it. Things may resolve on their own. On the other hand, a 2 -3 week trial of prednisolone, at a dose of 15 to 20mg/day, commits you to nothing. If you don't respond, you can be confident autoimmunity is not the problem. There's no need to taper off such short courses.

[PMRpro Ambassador]

Don't fall into the trap of thinking painkillers are a safer long term option than pred just because you buy them OTC. Longterm paracetamol is less of a problem than NSAIDs although it can cause liver enzymes to shoot up as at least one member of the forum will confirm and can also cause kidney damage but the main problem in PMR is it doesn't actually work very well. NSAIDs have effects on the cardiovascular and renal systems so shouldn't be used regularly over a long period. A low dose of pred often has fewer adverse effects AND works better.

You can't really say much about the level of blood tests - mine were never out of normal range and that is the case for up to about 20% of patients. They may be raised for you but still in normal range - and yours are raised.