Am I right to be doing this?

I have wondered on many occasions why there isn't more interest taken in our hormone balance before we start on pred - not just the adrenals but the entire hypothalamic/pituitary/adrenal interrelationship (the HPA axis). One of the things that should be ruled out in a case of ?PMR is hypothyroidism and there is some record of autoimmune thyroiditis being associated with PMR. And plenty of us have other autoimmune problems - but so much is looked at in isolation. Maybe I'm just thinking in too alternative a manner :wink:

Taking pred means the adrenals tend to go on holiday! It's a feedback system - if there is a high enough level of cortisone in the blood, no more is added. Pred is an artificial replacement so when it is present no more need be made. In time the adrenal glands lose their ability to respond to stress with a dollop of cortisone, hence the need for care during operations and the like and sometimes even some extra pred to help the body over the experience. Then they need quite some time to recover after the pred dose falls low enough for the body to need to produce a bit to top up the artificial stuff - anything up to a year.

Much to think about - but it seems no-one wants to

Eileen

Im sure my adrenal glands have gone on a long holiday as i have taken steroids for 5 of the last 9 years and anything stressful definately brings about a flare in my PMR

You are right no one seems very interested in them Eileen ! I did try reading a bit about it last year and all the info I found seemed to be American based I think they even have supplements to kick start them The diet info all started with give up coffee I remember !! I dont drink huge amounts but I do enjoy what I have I shall have to have another look at the websites

Rosemary

On the North East website, there is an article about Steroids and What they Do. It was written by a patient and checked medically - and it is a usefull guideline.

Hopefully in the future, with more research all these things will be taken into account. Meantime we ask the awkward questions of the medics who we are dealing with - it makes them think.

Mrs G

When I was researching an anti-inflammatory diet a few years ago, I discovered that as well as coffee, sugar also stresses the adrenal glands and if those glands are fighting to get back to normal having been suppressed by the steroids then it makes sense that both coffee and sugar should really be kept to a minimum at least until the glands return to full strength.

There is a test available to check whether the glands are fully operational but I it isn't a simple blood test and I believe it may involve hospital admission. My friend's grandaughter was on steroids for a number of years and she had the test to rule out the possibility that her glands may have been suppressed indefinitely! Her long-term steroid treatment was connected to a bowel problem and she has now had to have a colostomy at the age of only 17, poor thing.

Like you, I don't drink much coffee - in fact only when I'm out for a meal and I can't resist a decaf cappucino!

MrsO

It's called a synacthen test and takes half a day - it's usually done as an outpatient. You have to stay in bed during the test, they take a blood sample, give you an injection of something to stimulate the production of cortisone by the adrenals and then take 2 more blood samples. Each of the blood samples is tested for the cortisone level. So now you know!!

I don't know - a lot of these sites that tell you this and that is bad for whichever bit of the body are often run by alternative practitioners with little or no real physiological knowledge - most of them looking to make money out of some sure or other. I'm never very impressed by a lot of them personally. Certainly a very large amount of strong coffee isn't very good for you - but whether the odd cup is going to do any damage I really doubt. What is certain is that a diet of coffee and ciggies for breakfast followed by a day of unrelenting stress in certain jobs isn't good for you longterm - but whether it's because of the coffee I wouldn't like to say! :wink:

Eileen

That definately sounds like an Italian breakfast !! Cigs and an Expresso !

I generally only have 2 mugs of coffee a day so I am not addicted but when i tried last year to cut them out I did get headaches !! I wasnt in the mood at the time to cope with it as my PMR was having a flare I dont eat lots of sugary food anyway as they always make me feel tired

Im sure no one would give me a test for it The Drs would rather I stayed on 5mg forever ! I will have another look into it when Ive got a minute

Best wishes

Rosemary

Hi all,

is it the caffeine in coffee that is the problem re- adrenal glands? Is decaf OK.

Cheers,

Molly.

Hi Molly

It will be the caffeine in coffee that stresses the adrenals. I avoid it not only for my steroid-suppressed glands but also because coffee containing caffeine gives me palpitations and can increase my blood pressure (I do have an irregular heartbeat and a slightly leaky heart valve). I can't resist a cappucino following a meal in a restaurant but always ask for decaf - if they give me the wrong one my body tells me! :D I also buy decaf tea. No decaf chocolate unfortunately but no chance of me giving up a few squares of that a day! Interestingly, many years ago I used to suffer from a bloated stomach by the time I left work each day. I tried ditching the coffee and the bloating disappeared! :D

MrsO

Hi MrsO,

interesting about the bloated stomach, I would never have associated that with coffee. I suppose different things affect different people.I have drunk decaf tea and coffee for some time now, as I was told at ENT that caffeine was bad for the menieres, One wonders whether there is a certain amount of caffeine in decaf, or none at all. I drink quite a lot of coffee made with all semi skimmed milk for the calcium. If I thought it was suppressing the adrenals I'd stop. Now that I'm down to 5 mg, I need them to start kicking in PDQ !! :lol:

Best wishes,

Molly.

Molly

There is apparently a small amount of caffeine in decaf coffee left over in the production process so maybe worth not continuing to drink \"quite a lot\" now you're at the lower doses when hopefully the adrenals are trying to return to full natural cortisol production. Keep well!

MrsO

MrsO,

I think I'll take your advice and cut down then.

Molly.