STATUS UPDATE

[SMH4CRNA]

It has been a couple months now off prednisone per doctors recommendations. As a reminder, the Rheumy believed I did not have PMR despite the elevation of inflammation markers and the success of prednisone because I am 49yo.

Since I have been off I have been in pain daily in shoulder, pelvis, hands and feet. Take Celebrex and tylenol everyday with minimal relief. I am looking at alternatives such as mental health, acupuncture, stretching, yoga and ect. Fortunately, a side effect being off prednisone I have lost 25 pounds and feels great.

Decided to get a second opinion from another Rheumatologist. My appointment will be the end of the January. I have read books, spoke to you all and the facts the previous rheumy did not make sense. She said, people with PMR typically have a loss of strength and point tenderness. I thought it was perceived weakness and the pain is diffused. Am I wrong?

I should add latest abnormal lab results to this status update:

PLT 446

CRP 2.4

ESR 45

[SheffieldJane]

Although it is statistically unusual to develop PMR below the age of 50 it is not unheard of. If Pred was containing your symptoms it is likely that your condition is PMR and it should be treated as such. I am not sure that I understand your final question. Others will be along, I am sure.

[PMRpro Ambassador]

Studies have found there is no objective loss of strength - mentioned under Key Symptoms here:

londonpainclinic.com/condit....

Patients often complain of weakness but long discussions with some of the top UK researchers in the field decided that it is part of a wide-ranging misunderstanding of how terms are used by patients and doctors.

This is a fairly useful summary article

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

which says "Patients report limb weakness by which they understand the limitation of motion due to stiffness and pain. In contrast with polymyositis, PMR does not cause actual muscle weakness24,29"

although they seem to me to have misunderstood the use of the Bird and Jones criteria as well as the ones in the 2015 Recommendations - they are NOT for use in diagnosis, useful though they are. They are to standardise cases included in studies to make it more likely all cases are really PMR. Not the same thing at all.

Somewhere it was suggested that the weakness develops because of long term inability to use the muscles because of pain and stiffness.

Not sure what she means by "point tenderness"? In PMR you do meet both generalised muscle tenderness and trigger points can be identified, often overlapping with the trigger points they define in fibromyalgia. Most of the points at which pain can be elicited are due to myofascial pain which at least one expert considers may be the defining pathology of PMR and certainly applies for me, Attachments of muscles to bones can be quite excruciating and both my physio and rheumy are very gifted at identifying them!

jrheum.org/content/jrheum/4...

[SMH4CRNA in reply to PMRpro]

Agreed, I have spent countless hours researching PMR and I am not sure how they came to their conclusion. I fit the symptoms described perfectly. They stated they have never met anyone my age who had PMR, therefore you cannot have it. They test my strength, check for joint swelling and come to the conclusion I don't have it. Fortunately, I have another appointment next month. The issue is, I will not go back on Prednisone, despite it working at lower doses.

[PMRpro Ambassador in reply to SMH4CRNA]

Then there isn't a lot of point fighting for a label where there is only one answer to stop it sticking in!

I am very stumped by the way they want to diagnose it - it isn't RA, it doesn't cause swollen joints in the majority of cases.

rarediseases.org/rare-disea...

says "Muscle weakness may occur rapidly and affect the neck, trunk, and upper arms and legs. Joint pain, swelling, and tenderness may be present"

But I think that is a misunderstanding of the effects and swelling "may" be present - but equally, it may not. PMR causes bursitis - I have it in my elbows but, unlike tennis elbow, there is no swelling.

[SMH4CRNA in reply to PMRpro]

PMR causes bursitis? Interesting, in 2019 I had horrible swollen bursitis in my right elbow. Never knew to correlate with PMR. Also, had swolen hands and ankles as well. Nothing recently though.

[PMRpro Ambassador in reply to SMH4CRNA]

Bursitis is often an integral part of PMR

"The term "polymyalgia rheumatica" implies a myopathic process, but the muscle in PMR is histopathologically normal. It is in fact the proximal articular and, in particular, the periarticular structures (bursae and tendons) that are mainly affected in PMR, as has been demonstrated by ultrasonography, magnetic resonance imaging (MRI), computed tomography (CT), and 18F fluorodeoxyglucose (FDG) positron emission tomography (PET) [15-22]. (See 'Imaging findings' below.)"

uptodate.com/contents/clini...

Swollen hands and feet can be due to RS3PE syndrome - also often part of PMR onset but it responds to moderate dose pred and then often doesn't recur.

[artfingers in reply to PMRpro]

Fascinating! I understood, however, that with PMR muscles take longer to recooperate after being used intensely (such as in body building). So I had thought therefore that muscles were affected in some way by PMR?

[PMRpro Ambassador in reply to artfingers]

Not structurally, It is possible/likely that the blood supply and therefore supply of nutrients and oxygen is compromised but that isn't certain, just accounts for what happens. Or the mitochondria are involved ...

[SMH4CRNA in reply to artfingers]

This yet another reason I believe I have PMR. I can work out 3lb weights and be sore for days. I don't think that is normal.

[piglette]

The fact that steroids work and Celebrex don’t, plus you originally had raised markers reduced by the steroids does rather point to PMR. Your PMR must be looking towards your next birthday so that it can become real PMR!! I think a new rheumatologist who knows something about PMR may be a good idea.

[SMH4CRNA in reply to piglette]

Haha, my 50th birthday is Feb 10th. My appointment is Feb 2nd. My luck they will say, nope you don't have PMR until the 10th.

[Seacat30 in reply to SMH4CRNA]

I will be 60 on Feb 7. They could be trying to get me off pred before I get free prescriptions?

[piglette in reply to SMH4CRNA]

🥹🥹🥹

[DorsetLady PMRGCAuk volunteer in reply to SMH4CRNA]

Highly likely with what’s gone on before 😳

[singingloud]

Can you tell me your reasoning for not using prednisone at this time?