What’s happening to our adrenals while we are on pred?
Posted , 14 users are following.
Following this excellent forum for the last couple of months, I realize that I have amassed a wealth of knowledge about PMR and it's effects on the patient. Who knows, maybe more than the average, everyday rheumatologist. One thing remains a mystery to me, though.
What is happening to our adrenals while they are being suppressed by prednisone? Are they atrophying (sp?) Are they shrinking? When I'm off pred, (perhaps 5.95 years from now) will they bounce back like nothing happened? Or, is there long term harm being done to our adrenal glands, but something we have to put up with in order to have some quality of life?
Finally, is there something we can do for our hibernating adrenals while we use chemicals to perform their job? I remember reading, somewhere, that cod liver oil strengthens the adrenal glands, but I don't recall where I saw that, so I can't give you a citation.
2 likes, 14 replies
faye05942 richard07199
Posted
Hi Richard
I agree with your interesting query, but just to add more fuel to the fire, what about the rest of our internal organs ? What it doing to them ........
cheers.....
EileenH faye05942
Posted
Depends on the dose - below about 8-10 mg very little as there is a similar amount present in the body all the time, it can't function without it. No corticosteroid and you run the risk of being very ill and dying if it isn't replaced. At any dose, any inflammation will be suppressed - not entirely a bad thing.
https://www.mayoclinic.org/steroids/art-20045692
If you google "do corticosteroids damage the ... ", inserting an organ of choice you will get a load of links.
Brain: "Glucocorticoids, a class of steroid hormones, can adversely affect the brain, particularly the hippocampus. The effect is most likely to be indirect and in response to either endogenously or exogenously induced hypercortisolaemia. While the stress response is clearly adaptive and therapeutic doses of synthetic glucocorticoids treat many medical disorders effectively, both corticosterone injections and prolonged stress in rodents can result in changes in glucocorticoid receptor levels, altered hippocampal dendritic morphology, and impaired spatial memory. Less compelling but still provocative is the suggestion that patients with post-traumatic stress disorder or Cushing’s syndrome have decreased hippocampal volume and memory impairment. Of particular clinical relevance is the recent documentation of a memory decline that accompanies standard doses of corticosteroids. Patients with rheumatic disease who received glucocorticoid therapy for at least a year performed worse on memory tasks than closely matched patients with rheumatic disease who were being treated with alternative therapies such as gold. A separate longitudinal study found similar memory declines as early as one week after treatment began. The risk of memory impairment should be carefully considered before initiating treatment with glucocorticoids and their use should be considered in the differential diagnosis of memory loss."
On the other hand - I had far worse memory problems due to PMR in the 5 years I had it without being on pred. My memory has returned to more like normal over the 9 years on pred, despite any effect of aging in that time.
Liver - prednisone puts more stress on the liver than prednisolone, because it must be processed by the liver to form prednisolone. But otherwise the dose makes the difference and in some cases it is a case of worsening an existing condition rather than causing it.
https://livertox.nih.gov/Corticosteroids.htm
We know it often doesn't do the skin any good - though not everyone experiences it.
But corticosteroids are used to prevent damage to organs in many situations. So there isn't a single answer to your comment.
EileenH
Posted
I see the links still don't work...
jones10939 EileenH
Posted
Links are working here
EileenH jones10939
Posted
They are now - the moderator sorted them.
Flutterbie57 richard07199
Posted
I am just wondering about the adrenals myself as I am just in the zone now where mine should be kicking in again. My Doctor warned me that I can expect all kinds of weird reactions. I am not sure what to expect and want to see what patients actually DO experience. What Doctors think might happen is not always consistent with what patients actually experience. I am on 6mg and every day is a new weird health happening at the moment.
I have been on here for 3 years, I am so confused about using the new , confusing site at the moment, but I have 3 great new ideas from here, tonight, to try. It is a wonderful, mentally supportive site ! Good luck with your new health journey. There will always be some wonderful, experienced patients on here to support you.
EileenH richard07199
Posted
Since this post of Richards seems to have appeared twice I shall repeat my exposition from the other - do ignore it if you wish 😉
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."
So he doesn't push sales ...
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!
celia14153 EileenH
Posted
Thanks so much for this Eileen - absolutely fabulous
Flutterbie57 EileenH
Posted
I have not read up on cod liver oil, but would you consider 1 teaspoon a week, possibly ok Eileen ?
I had made the definite decision yesterday to try some cod liver oil after Richard mentioned it.
My father-in-law and his 14 living siblings (no longer), all put their good health and longevity down to one teaspoon of cod liver oil, forced upon them on a Sunday night after their weekly bath. The girls all lived into their 90's and the boys all lived till their late 80's, and all were in reasonable health till near their end. It is amazing as they were bought up by a near solo mother, in a 2 room shack up in the bush and a couple of old man made tents - no mod cons -heating.
I know we all keep looking for new answers, but maybe some of those old ideas are worth a try ?
EileenH Flutterbie57
Posted
It won't do any harm I would have thought - but part of the problem is all the other sources in addition. I eat a lot of oily fish so assume that cod liver oil would be a bit overkill. I hate the taste for the next 3 days so wouldn't take it anyway. But what else are you taking?
If 14 siblings all lived a long time there must have been something in their genes don't you think? Living in the bush - probably little nasty chemical environmental influences. My father-in-law's generation were wartime survivors - and the diet during the war in the UK is said to have been a particularly healthy diet , not sure about other countries, but certainly low in carbs of all sorts, processed carbs and sugar in particular.. But it was limited in many things and I can't help feeling the diet in the bush might have been pretty healthy in many aspects too. A lot of it is the foundations laid in early life - and the question: is can they be reversed?
richard07199 EileenH
Posted
I found the reference to the use of cod liver oil for help in activating hibernating adrenals which I had mentioned earlier.
https://www.cssassociation.org/patient-stories-reader/items/reducing-steroids-while-on-a-low-dose-activating-the-adrenal-glands-by-marian-mesker.html
Granted, the site is for another medical condition, but it is a condition that calls for the use of prednisone, and subsequent tapering.
The reference to cod liver oil is about ten paragraphs down.
EileenH richard07199
Posted
Yes, I have seen the site before. Not saying this site is guff - but a lot of the recommendations for supplements to stimulate adrenal function that you find on the internet have no scientific basis whatsoever.
Flutterbie57 EileenH
Posted
I think it was genes as well and yes their lifestyle was probably ideal. They loved to tell us about their Sunday night tradition/torture tho. No wonder they all remember it well if the taste stays with you for 3 days afterwards.
I am not taking anything extra at the moment. Trying to eat healthily, and we are fortunate that we have our own organic meat, eggs and some vegetables.
I took extra supplements the first year, gave up the second year, then tried turmeric for a long time .
At 6mg this week I am still working through the drop, not feeling good and I thought perhaps this may be a good time to take a supplement or two. The deer velvet adverts sound so amazing I am tempted to try them too. Good old advertising !
Joydeck richard07199
Posted
A year into PMR, I've been stranded on 7 mg pred for 4 months, Below 7 mg, I feel increasingly weary in upper thighs and shoulders, symptoms somewhat different from fleeting PMR flares in the past. At 7 mg I feel fine, so I guess I'm here to stay.
Mum, I learned recently from her final hospital record, had PMR when she died at 87 years.
This thread speaks to me.