predetermined!

[AnniesRyder5]

I thought my appointment would be with a rheumatologist consultant but it was the final 4pm slot last Thursday (ie day before bank holiday) and the staff on duty looked far from enthusiastic to see me.

I started to doubt it would go well when I saw quite a few urine samples including mine chucked into a corner. No-one would be testing them obviously over the holiday!

Almost the first thing the doctor said to me as I sat down was she didn’t think I have PMR. I related my symptoms but her opinion was fixed.

Going forward I need to do a cortisol test after which she will telephone me to drop to 4mg (from current 5mg) if it’s ok and if it’s ok I should take ESR and CRP tests.

My query is this - won’t the cortisol test be affected by the steroids even if I won’t be taking it prior to the test?

I would like to add that I quoted our very experienced administrator “ treating PMR shouldn’t be just about reducing relentlessly to zero “ - not a flicker !

I also added that I feel at 74 quality of life is more important to me but she then quoted all the risks of heart attack, stroke - death etc etc!!

I should like to thank you in advance for your own thoughts

[DorsetLady PMRGCAuk volunteer]

Another proponent of “not reducing relentlessly” here. But what do we as patients/ex patients know!

 Basal Cortisol test -which measures your cortisol levels. It is normally done early morning, and you should not take your Pred prior to test – you should also check regarding other medication, but you do not need to fast.

And 5mg to 4mg is a big step -whether it’s adrenals stuttering or PMR-0.5mg better…and totally agree on QOL.

As you say, think you were subject to the Bank Holiday “I don’t want to be here” vibe

[AnniesRyder5 in reply to DorsetLady]

funnily enough years ago there was a similar opinion given to unreliable cars - they were called Friday cars !

[DorsetLady PMRGCAuk volunteer in reply to AnniesRyder5]

Yep -well remember that!

[Oboes22 in reply to AnniesRyder5]

I worked for an international motor manufacturer and it was Monday and Friday cars and they were called Micky Mouse cars !

[AnniesRyder5 in reply to Oboes22]

I worked in Oxford in the seventies and the Cowley cars had a terrible reputation on every day of the week !

[Oboes22 in reply to AnniesRyder5]

I worked for Ford of Britain for many years both in Liverpool and HO in London and loved it all but I remember all cars around that time had many build and manufacture problems. Things have changed but I’m not sure for the better, you can’t change a headlight bulb for £2.50 you have to change a sealed unit for £250.00 😔😔. Hope you are coping with your PMR. Take care.

[HeronNS in reply to AnniesRyder5]

There were defects in the new tub installed in our bathroom some years ago as part of a major reno. I was told by the man on one of his several visits over the years to repair it that it was probably the first in the daily run, before the bugs (and bubbles) had worked their way out. (To add insult to injury it had been a special order for another customer, mistakenly installed in our room and not the correct shade of white for us; we had to change the other new fixtures. And the big name US company contractor had bought it from would not honour any warranty in Canada.)

Maybe one of the stressors which eventually contributed to PMR?

[piglette]

I would have thought 5mg quite a high steroid dose to do a Cortisol test, it is normally done at around 3mg, so one is reasonably close to zero. What is all this gibberish about risks of heart attack, stroke - death etc etc your doctor is talking about? I did post something not so long ago that people with PMR tended to have a better expectation of life as they were being regularly checked for bloods etc etc.

[AnniesRyder5 in reply to piglette]

thank you piglette

You’ve made the point I was concerned about - that the cortisol test will be done at too high a dose and so prove her “theory “ that I don’t have PMR - catch 22 !

[piglette in reply to AnniesRyder5]

I am not sure that the cortisol test will prove anything about whether you have PMR or not. Did she say that? All the test shows is whether your adrenal glands are capable of working OK without the help of the steroids.

[AnniesRyder5 in reply to piglette]

so do you think my taking 5mg the previous days will not affect the result ?

[DorsetLady PMRGCAuk volunteer in reply to AnniesRyder5]

The advice is not to take Pred before you have test that day - that way there is more than 24 hrs since you took previous dose.

But like  piglette not sure what she is trying to prove exactly…

[Suffererc in reply to DorsetLady]

that ‘she’ was right 😂

[piglette in reply to AnniesRyder5]

I suppose I am sounding full of scepticism.

[LittleWhiteBichon in reply to piglette]

with reason piglette, I think

[PMRpro Ambassador]

At the pred dose you are on, your cortisol level is likely to be pretty low, though of course there are exceptions! The pred just suppresses it, it doesn't interfere with the assay. But it is utterly pointless with regard to PMR or not. Like piglette - very sceptical. In fact, I'd go so far as to say she is a bit clueless ...

My daughter was working on Friday (in Scotland) in the endoscopy unit and as all the patients present had been done, most people had already departed early for the weekend, it being a holiday. She was just finishing tidying up her room and the consultant waltzed in with an emergency which meant that instead of getting off early like her colleagues, she worked extra time to get the patient done so they knew if they needed an emergency surgery there and then or could wait for next morning. No extra pay for the overtime - just time in lieu and all her colleagues got off early. The consultant didn't even come bearing compensatory Easter eggs ...

[borednow in reply to PMRpro]

And then they wonder why Junior Doctors are on strike .........

[PMRpro Ambassador in reply to borednow]

In 2008-ish their salary wasn't bad but they have had over 30% pay cut in real terms since then - and leave medical school with enormous debts to pay of from the start. Now as junior doctors they are told where they will be working, little choice, it is a lottery, and may end up moving across the country from one job to the next with no option for married couples to be working close to one another.

[Suffererc in reply to borednow]

read in a daily paper someone had commented’if they don’t like it change jobs’ . Lots I’d TV doctors now. 😊

[AnniesRyder5 in reply to PMRpro]

the current situation is just hopeless - I agree the junior doctors need a decent pay rise but the underlying tensions will take a while to dissipate. The two nurses I saw at my appointment were very churlish but all smiles when one of them took me to the doctor’s room. Where’s all the goodwill gone ?

I think it’s all gone to the private sector !

[Missus835]

What a horrible experience but I wonder if it's actually a one off? May not be just the holiday. There's the Treat To Target paper which the Rheumatologist probably wouldn't read anyway. Probably a link for it on the right? They know little or nothing of PMR or GCA and sadly either think they do or don't want to learn. You are so right about QOL and I also have a rheumy who is like a hare in a forest fire for the fast taper. I have opted to tweak her tapering "plan" and listen to my body. Hoping it works out positively for you.

[PMRpro Ambassador in reply to Missus835]

ard.bmj.com/content/early/2...

[Missus835 in reply to PMRpro]

Thanks Pro. Although I have it on my desktop, it never wants to paste here.

[AnniesRyder5 in reply to PMRpro]

so QOL wins ? A pity she doesn’t read more!

[AnniesRyder5 in reply to Missus835]

thank you Missus but I must admit the experience left me feeling quite deflated and of course not forgetting that she will copy her foregone conclusions to my GP - will he stop my pred prescription if the tests go her way?

[Missus835 in reply to AnniesRyder5]

I don't have a GP at this time. He fired me bec Rheumy refilled my anxiety meds when he would not. A quackadoo he was anyway.

[AnniesRyder5 in reply to Missus835]

if he quacks like a duck , walks like a duck …. I love your positivity despite him definitively being a duck !

[ChinaWuntoo]

Do you need a rheumatologist? I got rid of mine and am happy that my GP (with input from me!) can halp me manage my PMR.

[AnniesRyder5 in reply to ChinaWuntoo]

hi China - I’m hoping I can keep my GP on side too

[AnniesRyder5]

so true and she was determined to talk over me !

[Suffererc]

Why should a Bank Hol make any difference to your appointment. They are there to work until time. Do they know how they make the patients feel.

Had the same with an Audiologist. It was lunch time and she couldn’t be bothered to set my hearing aid up properly. Have never been able to wear it. Surprised me tho that she didn’t seem to know most deaf peeps watch peeps faces

Good luck with your test 😊

[AnniesRyder5 in reply to Suffererc]

thank you