Hi , so my mother who has been suffering with PMR for 5 years ( Diagnosed) Her last bloods came back with no inflammation present. GP now says she didn't have PMR , agreed that she had the same symptoms.
Now my mum is angry and upset that she thinks she took all the Pred for no reason
She has suffered very badly with side effects.
GP has no idea what she actually did have.
Can the inflammation just disappear, and that is how the condition leaves the body ?
Hi,
Is your mother still on Prednisolone?
If so, then that is what is keeping her inflammation markers under control - that’s what it is designed to do. It doesn’t mean she doesn’t have PMR now or in the past - it just means the inflammation caused by the underlying illness is being controlled.
The only way she will know if her PMR is gone is to come off the steroids and have no return of symptoms. Is that where she is?
Presumably her symptoms led to the original diagnosis, but unfortunately there can be confusion with other illnesses - so what does GP think she does have/did have?
Hi , thanks for posting. She had the results of the blood tests 2 weeks ago , and it was at the follow up appointment with the GP , where she was told that she had no inflammation and therefore she didnt have PMR.
She is still on Pred, starting to taper off.
Now at 4mg.down from 5 mg .
Doctor had no idea of alternative cause of symptoms.
To my understanding the GP can't really at this point state that she hasn't got or never had PMR.
As you say you wouldn't know without stopping Pred.
It may be a good idea for your mother’s GP to read up about PMR and steroids. If what she says is true most people would only need to take pred for a few days. It does annoy me when doctors say things that are implicitly incorrect.
I don't understand the drs thinking. If your mum is still on steroids then the bloods should be "normal". If she has tapered off a while ago then the PMR is no longer active. Like DorsetLady has said...what does Dr think it was then? And what does Dr know about PMR?
Yep got me wondering if this GP is across PMR.
Mum had been on steroids for years without ever been able to stop. I think she got down to 5mg for a while then about 6 months ago she went back up to 6 .That was because of bad headaches behind the eyes, which then reduced dramatically
Well 6mg was controlling inflammation for me with CRP of 1.6 now down from 6 at the last and down from 54 at highest. I don't understand why Dr would dismiss PMR seeing as the pred is doing its job! Your mum should just be able to manage her taper as she needs it and hopefully in a way that keeps the markers down. Apart from anything else I do wonder if that Dr realised that up to 20% of people never have raised markers but still have PMR/GCA. It a condition that is diagnosed when other things are discounted. I presume the original Dr initially did that and trialled pred which worked. 🤯😤
As you say I don’t think your GP is up to speed with PMR - would it be worth requesting a referral to Rheumy ?
Your mother obviously has “something” - if the headaches were reduced by an increase of just 1mg.
I agree , only a Rheumatologist can give the " all clear " ( imho).
And yes the Pred is doing its job. It's not, as if all the symptoms have just magically disappeared, in fact I can't really see much change at all .
Doctors generally just don't know how to deal with this .
I think she will taper off and all the symptoms will be back with a vengeance. That's if a Rheumatologist confers with doctors and if she can even get to see one within next 3 months !
Yes that’s the problem! Rheumy appointments seem to be as rare as hen’s teeth nowadays.
Maybe a one off private appointment- shouldn’t have to - but sometimes it’s the only answer.
I do not know how old your Mother is but, if she has been on pred for five years, she is five years older.
So, before she drops any further, insist on a Synacthen test to see how her adrenals glands are and if they have woken up. Just put that in your search engine and read up on it.
I had one at 4mg and everything was OK......others it has not been OK and the Endo consultant will sort it out. I just want to make sure you are aware.
Thanks , I will.look into that.
Of course it can just disappear - it burns out and goes into remission and then you don't need pred to manage the inflammation. And her blood tests SHOULD have been at that level right from the start once the original dose had done its job.
Since she is still on pred - that blood test result just means she is on plenty of pred to manage the inflammation. That is how it should be. It doesn't mean the PMR has gone - as she many well find as she tapers the dose now. There are plenty of people who can tell the story of being on 1 or 2mg and the doctor insisted the PMR was gone only to find it hadn't and the symptoms returned when they stopped.
That GP obviously hasn't a clue how PMR and pred management works and you can console your mother that she probably has needed the pred to live as well as she has. If she is lucky she will now be able to reduce to zero without too many problems - but that doesn't mean she didn't have PMR and didn't need pred.
And you are quite correct - on a 5mg dose he can have no idea if it is still active or not. Unless of course he has a crystal ball - lots think they have but they don't work very well!!!
Normal blood what now?
My doctor won't acknowledge PMR without inflammation markers in blood tests.
Measuring Inflammation
Blood test readings now normal.
Extra meds now - for blood pressure 
