What’s happening to our adrenals while we are on pred?

As far as I know the only hormone produced by the adrenals which is affected is cortisol - which prednisone substitutes for. The adrenals continue to produce their other chemicals. And there probably is nothing specific we can do to help them along as we taper below 7 mg, other than eating a healthy diet to keep our whole bodies healthy.

In some cases the adrenals do not start to produce cortisol again when a person stops taking pred, in which case they will need to stay on a low dose. But mostly they do start up again although it can take a year or two before they are back to normal.

I've been mostly at about 2 for the past couple of years, bar a couple of hiccups. But gradually I find I have far fewer episodes of "deathly fatigue" so I assume my adrenals are producing their fair share of cortisol and hopefully when I'm able to reduce further things will continue to improve. Fingers crossed. 🤞

It seems to depend on the doctor as to what they say - hence the major confusion!

In one sense it is a bit like your heating at home. You perhaps have a central heating boiler that heats radiators and it is controlled via the thermostat in the living room. But you also have a wood burning stove in the living room which you use on occasions. When the wood burning stove is on the room is warm and the thermostat knows you don't need more heat sent to the radiator. But the water heating continues. The central heating is the adrenal glands, the wood in the woodburning stove is the oral pred dose you take for PMR. As the supply of wood burns down less heat is produced - the temperature in the room falls and the central heating notices so starts to produce more heat. But in autumn you get warm days and loads of sun alternating with chilly cloudy windy days - the thermostat gets a bit confused, it hasn't been in use for ages over the summer and so is a bit dusty and rusty. It takes time to sort itself out and get the production of heat right.

As long as we are taking and absorbing more oral pred than our body requires to function well the adrenal glands sense that and don't make any more. But they continue to produce the other things although they may wobble a bit up or down. Like muscle it is a case of use it or lose it and over time the cells atrophy because they aren't having to work. At some point they are in a state where they have to stage a graduated return to work - which takes time. That is why it is dangerous to suddenly stop taking pred - at any dose, even low ones.

The point at which your adrenal glands have to start up again varies - depending to some extent on the bioavailability of pred - it varies from about 50 to 90% depending on the person. Some doctors assume it is constant and quote the average 70% as if that applied to us all - it doesn't, some of us absorb barely half of what our neighbour does and then there are other factors too. As a result, once we get to about 10mg we may notice we are more tired not less so - despite being on LESS of the steroid which we thought was contributing to our fatigue levels. Or we may be fine until 5mg or even less - or never have a problem.

As we age our adrenal glands and the other glands involved in the HPA axis (the hypothalamic, pituitary, adrenal axis) may wear out a bit anyway - like the rest of us. Some experts have suggested adrenal function may have an influence on the development of PMR and low adrenal function has been identified in some PMR patients - but by no means in all so that is disputed, like a lot of PMR. Some people reduce their pred dose steadily and have no problem at all, the adrenal and other glands stick their noses out and get on with life again, producing the substances that result in a top-up of cortisol and all is well. Others reduce at the same rate and it goes pear-shaped but by slowing down the rate of reduction and the size of the steps it works OK, just it takes a lot longer. Yet others just can't get things to settle down and struggle to get below a low dose without extreme fatigue that stops them functioning - and when investigations are carried out the adrenal glands just aren't producing as much as is needed. Yet others - not many though - reduce and feel fine and think it is all going well. But luckily their doctor does a synacthen test and discovers there is something preventing them producing cortisol - a potentially dangerous situation, despite them feeling OK.

So all things are possible and it isn't just the adrenal glands themselves that are involved so it isn't a simple equation - sometimes several factors are involved and tweaking one results in everything else having to get their balance again.

And no - there isn't a lot you can do to keep them oiled while on pred - there the analogy with the heating falls down! A good diet helps, it helps everything, as do lifestyle factors.

Andrew Weil, whose foundation exists to market products to fund its research work, says on his website

"“Adrenal exhaustion” and “adrenal fatigue” are popular diagnoses from alternative medicine practitioners but are not recognized by conventional physicians. Those who make them – including nutritionists, chiropractors, massage therapists and health food store clerks – base them on non-specific symptoms such as fatigue, lack of energy, depression, weight problems, insomnia, cravings for salt and sugar, dependence on caffeine or other stimulants to get through the day. These can occur with many health problems as well as in the absence of illness. Blood and saliva tests used to support the diagnosis of adrenal fatigue are not validated scientifically; the results are meaningless.

Keep in mind that some or all of your symptoms might indicate a real medical condition, which could be missed if you accept the diagnosis of a “disease” that doesn’t exist.

Conceivably, very severe stress (resulting from a prolonged illness, for example) could disturb adrenal function, but there is no physiological basis for the notion that everyday stress can ever “exhaust” those glands.

The adrenals sit atop the kidneys and secrete a variety of hormones, including adrenaline, male sex hormones, and cortisol, which mediates stress responses.

Note that adrenal insufficiency is a real medical condition, resulting from prolonged use of corticosteroid medications, from autoimmune damage to the adrenals, or from a problem with the pituitary gland in the brain. Symptoms can include dehydration, confusion, weight loss, weakness, fatigue, dizziness, low blood pressure and sometimes stomach pain, nausea, vomiting and diarrhea. Adrenal insufficiency can be diagnosed with blood tests; and the condition is addressed by replacement of the affected hormones.

The treatments recommended for “adrenal fatigue” usually are innocuous – rest, stress reduction, a healthy diet, and vitamin/mineral supplements. Others, however, can be harmful. I urge you to avoid taking adrenal glandular products and any supplements that contain adrenal glandular tissue. At best, these are unnecessary; at worst, they can disrupt the body’s delicate hormonal balance. The Endocrine Society, which represents physicians who treat, and researchers who study endocrine disorders, warns that taking these unnecessary adrenal hormone supplements and then stopping them suddenly can put you at risk of developing life-threatening illness, requiring emergency treatment.

If you’re under stress and feel that you need a lift, I recommend experimenting with cordyceps and adaptogenic herbs, such as eleuthero. In addition, try relaxation techniques such as deep breathing, meditation, yoga or biofeedback to help manage the effects of stress."

Cod liver oil has a lot of vits A and D - and too much of either are not good for you, especially vit A. Cod liver oil can cause bleeding problems and make some illnesses it helps in small doses worse if you take too much. Besides the effect on your - gut and the taste!!! A lot of the symptoms the internet "adrenal fatigue" supporters say are due to it are also due to a load of other factors - and in the short term these supplements may make you feel boosted - but long term they are not good for you and may even contribute to problems. And some of the things they sell are potentially dangerous to the rest of the body. Save your money!

Well, Richard, you know you asked the pertinent question when the Guru writes War and Peace as a response. And I say that with only respect and admiration to Eileen!

When I try to understand all this, I feel like I just woke up to a 2nd semester college organic chemistry course chalkboard filled with symbols, letters, numbers, arrows and unsolved problems, and I barely passed the 1st semester.

You have cracked the lid on the complexity of understanding the PMR problem, and therefore, the difficulty in it's treatment.

Eileen, who is doing leading research on PMR and GCA....and what are their areas of specialty (rheumatologists, endocrinologists....)?