My doctor won't acknowledge PMR without inflammation markers in blood tests.

[Yogikay]

I have been in unbelievable pain for seven months.

Was vaguely suggested PMR by neurologist and given prednisone, I was well for about five months.after the trestment.

The pain is back with a vengeance now in hips arms neck over and above not being able tp walk.

Repeated visits to doctor blood tests MRI now he won't refer me to rheumatologist says we must focus on pain management.

I begged him for prednisone, he flatly refuses.

I had twenty five tablets in my cabinet of 5mg have taken them for five days.

now going to reduce as I am running out of tablets.

any suggestions for me I am desperate.

[piglette]

You could become really ill by just stopping the steroids. Your doctor ought to be reported. Can you see a rheumatologist?

[Yogikay in reply to piglette]

I am going back to see my doctor

But this time I got hold of previous diagnosis reports that I had PMR

With no blood showing inflammation,

Can see him on 9 September I hope and pray he hears me this time.

[piglette in reply to Yogikay]

Good luck

[DorsetLady PMRGCAuk volunteer]

Hi,

in your bio/profile you state following -

First diagnosed two years ago even though blood tests were normal.

Treatment of prednisone for 20mg It was effective .

It was effective until January 2023.

I now find symptoms returning and getting worse by the day.

Presumably you tapered from 20mg down to zero… and since January the inflammation has built up again. .. which obviously proves that PMR last longer than your doctors believe… but then we all know that.

What pain management has been suggested? Think you need to see another doctor who has some understanding of PMR - and who is willing to refer you to Rheumy- is that possible?

Unfortunately as is well documented the only tried and tested medication to control the inflammation caused by PMR is Pred

[Yogikay in reply to DorsetLady]

thank you for the input really appreciated.

I am going back as the five days of prednisone (I had in my cabinet and used them snd it took the pain away. But I don’t have more and of course the pain is back,

I can’t walk or use my arms so going back to family doctor and see what happens when I tell him what I have done.

Printed your suggested article and will take it with me.

Might tell me to get lost ???

[DorsetLady PMRGCAuk volunteer in reply to Yogikay]

Guess you mean the article PMRpro lined…hope it helps..

[Yogikay in reply to DorsetLady]

I take 2Tylonol 3 four times a day?

Was given Tramadol an opiod but have refused to take it,

[DorsetLady PMRGCAuk volunteer in reply to Yogikay]

OK. ..but neither of those will do much for PMR… but at least if you try them and they don’t work, it’s more evidence that it is actually PMR!

[PMRpro Ambassador]

You were given a short course of steroids? Which is NOT the way to deal with PMR if they were confident of their diagnosis.

Up to 20% of patients with PMR do not have raised markers - that may be because they really aren't raised, which happens, or because they are raised for you but still within the "normal range" which isn't the normal range for a single person but for 95% of a large population, typically 10,000, of apparently health subjects. You have your own level.

Here is some reading material for your sceptical doctor:

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

academic.oup.com/rheumatolo...

reports on a series of patients of whom several had normal markers

The same authors produced this:

scholar.google.com/scholar_...

and you get the entire paper as a download by clicking on the PDF link at the top right.

He'll probably discount it as it is Italian work - but some of the top PMR experts came from Italy - and probably the most knowledgeable in the world as present still does. He is my rheumy!

[Flivoless]

You really need to change your doctor.

[SheffieldJane]

Could you return to the neurologist who first spotted that it might be PMR? It is certainly behaving like it and if it is, your current doctor’s treatment is nothing short of torture. A significant percentage of patients do not have raised CRP levels and certainly not when Prednisolone is in the system. Could luck in finding an informed doctor.

[Suffererc]

WOW. What an incredibly uncaring doctor. Think he should change profession 😊

[Baker7000]

change your gp pratice

[Yogikay in reply to Baker7000]

Wish I could

I am one of the lucky ones who has a doctor

So many folks don’t have one so have to tread carefully and try and educate this guy !!?!!?ha ha

Will keep trying

Thanks