I've just been reading about cortisol in a blog by Holland & Barrett. It's over simplified, but the sources seem sound.
I know that high cortisol is linked to PMR and also stress related, but I didn't know:
"Signs (of high cortisol) can include:
weight gain, especially around the face and abdomen
feeling tired and foggy
gut issues
insomnia or poor sleep
facial hair growth in women"
I find this interesting as I suffered all these for years before PMR developed. I wonder if there could be a way of detecting this earlier thus helping to prevent PMR and GCA?
To my knowledge there is no link between raised cortisol and PMR. You may have had raised cortisol for various reasons but most people don't report those signs until they are on pred.
Only when you have been on pred for a long time which suppresses natural production of cortisol, Then your body must start to make its own again when, as your taper, your pred dose falls to levels that are lower than your body requires to function properly. That takes time, it doesn't happen overnight,
No Broseley, you havent misunderstood.......Holland and Barrett are playing fast and loose with the facts. No matter how much stress one has its not possible to produce enough cortisol to cause the physical effects, moon face, hump , weight gain round the waist etcetera due to cortisone tablets or of the illness, Cushings disease, (an overproduction of cortisone due to benign tumours). Under normal circumstances the body has a feedback mechanism that cuts off the cortisol production once it gets to a certain level.
Your cortisol increases with stress and logically if your cortisol levels are very high all the time, you may show signs you describe. Stress though can cause those symptoms and not be due to raised cortisol. The PMR/stress link is probably through some other mechanism because the treatment for PMR is more cortisol in an artificial, more potent form. This definitely causes the fat round the middle, insomnia etc. but it helps the inflammation from the PMR.
I think what is confusing to those of us that are not experts is what is the main purpose / driver of steroids as a medicine?
I am no expert, I just research and read what experts report.
Having read many a report & documents since being diagnosed with PMR I have tried to get my head around it all.
The following is what I understand ( and I may have got some things a bit muddled or wrong.
As I understand it, steroids put our cortisol making machine into hibernation, syntheticaly take over the production at a constant level & supress the immune system & it's the suppresion of the immune system that gets control of inflammation.
I understand the immune system when it goes bonkers gives us a good hiding as it attacks not only the bad cells but also the good ones and raises our plasma viscosity (inflammation) and manifests in auto immune disease such as PMR.
So the steroids dial down the immune system ( reduce it from attacking good & bad cells) The plasma viscosity lowers and our symptoms reduce.
This maybe is the reason why it gets a bit muddled? as the common denominator is the adrenal glands, those little magic things amongst other chemicals, that produce the hero & villain that is Cortisol.
The confusing thing especially when it comes to chronic stress is
Chronic stress decreases your body's lymphocytes — the white blood cells that help fight off infection.
Over time, the body can get used to high levels of cortisol, which can lead to inflammation and suppress the immune system's ability to fight off invaders.
So if high cortisol supresses the immune system, one would think it should help to keep plasma viscosity in check & reduce inflammation & not increase it ?
My impression is, too much cortisol can be as bad as too little and the main driver for steroids is to put the immune system into a snooze?
It is a bit confusing eh, some aspects seem to contradict each other.
Be great to find out a bit more from those that understand this much more than I.
I want to be able to defend my corner when questions get fired at me or comments such as...
" Well why isn't your doctor getting it sorted?"
" Well you look ok to me"
" You seem to switch it on & off...alright one day, bad the next...you sure you are not making it up?"
"Well I was a bit stressed once and i've not got PMR"
" When are you going to get better ? its been months now, surely it must be sorted by now?!"
I've had all that fired at me.....one little voice trying to explain to friends, family & work colleagues who apparantly all know better than me, experts on this site and the medical profession!
As far as I know, the pred is used because it is a potent antiinflammatory. The shutting down of the adrenal function is a result of the presence of pred - and an incidental. It isn't the path the inflammation is dealt with. If you can use another way of stopping the inflammatory response you can stop pred AND maintain adrenal function showing the adrenal function bit isn't the cause of PMR. Half of patients put on tocilizumab for example, are able to entirely dispense with pred. There are at least 3 mechanisms for the inflammation that aren't controlled by tocilizumab. Some patients are able to get off pred with other medications - none of which suppress adrenal function.
"" Well you look ok to me"" - one response suggested to THAT is "well, you don't look stupid ..."
Thanks for confirming. Think I have sort of understood it correctly then. The primary role of Pred is for the anti inflammatory effect. (the immune system) and adrenals are incidental.
I read that approx 250,000 folk suffer from PMR.
Would be great if more research is done into it. i.e Cortisol levels ( pre cursor to PMR???) .
Chronic stress is one the biggest issues of sickness in the workplace in the UK. The out of control cortisol is responsible for many a condition but folk don't realise it.
Would be interesting to see what those 250,000 folks background story is?
Are their common themes and scientific possible links?
After all I have read many times, ' we do not know why PMR suddenly appears?'
If PMR by chance does have anything to do with it and it comes out in folk from the age of 50+ then over time, that 250,000 could become an awful lot more. What are we storing up for the future?
It does beg the question though, other than those of us that suffer from the condition, in whose interest is it to sort it? I imagine like many other conditions, a lot of folk prosper from others misery! or 250,000 is not big enough for anyone to have on their radar. (other than all of us of course).
It would be great if more research was done - and there has been some... including some funded by the charity. But resources are limited - even more so nowadays, and it is still perceived by many as an illness affecting older people - and mainly women. So not very exciting for researchers!
This is an older one on numbers affected [UK only] - you can see abstract - but unfortunately not full article without paying -
It would be helpful if the articles could agree on whether it is rare or common! I have jsut read two where one said one, the other said the other! PMR is the second most common rheumatological condition after RA.
I find this article touches on some interesting points
not least that it varies by country and ethnic history and that it is almost certainly underestimated. There is an insistence it only occurs in the elderly - so cases in younger persons are not acknowledged and counted or diagnosed as something else.
Both studies probably need revisiting with more up to date information - but we can probably guess that’s unlikely in the foreseeable future. More’s the pity.
What we need is a benevolent multi millionaire whose beloved mother [ or father] suffers with it!..
Might be an issue there - according to my son who has worked for a few, all MMs are b%#}%*ds… 😳
That's unfortunate. I haven't met any responses like that, but maybe it's been said behind my back! I have a friend with MS, and she had the same kind of comments, made to me, about her. "She looks alright to me." One even told me she'd been making it up!
It is only putting the adrenal axis into snooze because it doesn’t need to work to produce Cortisol because the amount and potency of the Pred is huge. The feedback loop just says there’s more than enough in the system thank you.
Having read an article that made my brain hurt, it seems that one’s anti-inflammatory substances like cortisol can become overwhelmed by runaway inflammatory factors like IL-6. The cortisol we produce doesn’t do the trick and one’s response to the cortisol is blunted. Inflammation isn’t just one thing, it has different mediators and processes.
That report is SO misleading with the use of CAN and MAY. They say “In otherwise healthy people, lowering your cortisol levels may help with symptoms of stress. See your GP if you’re experiencing any of the signs below.” If you read this sentence it does not actually LINK cortisol to the items you mention apart from it being in the same sentence, they just say - see your doctor if you get any of them. In my opinion it is totally misleading and I would have thought Holland & Barrett should know better. It really puts me off buying from them. Perhaps I will write and tell them so!!
I'm going to have to go and have a look now. I doubt that they will take much notice if you write to them, but the advertising standards love all that stuff if they really are pushing the envelope and not sticking to regulatory guidances. ha ha I'm retired now, I don't need to put my work hat on, but I have a chest infection and feeling sorry for myself, so it will keep me out of mischief for a few minutes.
I was under the impression that being under chronic stress could lead an exhausted stress response which could trip the immune response into over drive ie auto immunity? Its an idea I have been battling to put together. Am I wildly off the mark? Would welcome correction if so.
Chronic stress can affect the immune system though exactly how isn't clear. And what is meant by "an exhausted stress response"?
No single factor leads to an autoimmune disorder - it is repeated insults over years in combination with a genetic pre-disposition and possibly other factors that lead to it. You shouldn't blame any single specific factor - far more complicated than that,
Thanks for that. I am interested that there is no evidence of stress as a conclusive cause. Your range of knowledge is amazing! I was aware of the medical lack of belief in adrenal fatigue and so chose not to use it. But it seems that suppressed adrenal function once one reaches 7mg is often mentioned by members. This seems very similar to adrenal fatigue that can occur when one has suffered from chronic stress over a very extended period.
That is purely the return of adrenal function after suppression due to exogenous corticosteroid. The body knows there is plenty of corticosteroid present - it doesn't care whether it is natural cortisol or tablets of prednisolone. It knows too much is not good so doesn't make any more. I liken it to a central heating boiler with the thermostat in the room where the wood burning stove is. when the wood stove is on, the thermostat registers it is warm and the boiler produces no additional heat. As the stove burns down producing less heat, a point is reached where the boiler needs to make a contribution. But the thermostat is a bit rusty/cobwebby and stutters a bit at first. It isn't that the adrenals have worked too hard and so are unable to produce cortisol due to "tiredness" which is the claim in adrenal fatigue.
As far as I am aware, the medical establishment hasn't adopted adrenal fatigue as a real medical condition yet. I'm not aware of any evidence that it exists. I get the impression that it is something dreamt up by the nutraceutical companies in the US, as another way of trying to get you to buy their bonkers supplement products at great expense.
That said, anecdotally, there are an awful lot of posts in this group that associate the onset of their PMR to prolonged periods of stress or traumatic life events. There is no doubt in my mind that stress and trauma could be a trigger, but it's not the only one, and I am not aware of any actual research into a possible mechanism, if such a link can be shown to exist. Perhaps others in the group have greater insight into that.
I've read the article now and I don't have any issue with that. It seems pretty fair and balanced to me and not trying to sell anything. It is not an advertisement and would be considered general health editorial. It has been pretty well accepted in sports physiology for years that the immune system is temporarily depressed in athletes following a session of high intensity sport or endurance sports. It recovers in a matter of hours, or less. They seem to be implying that there is a cumulative effect if you are already stressed and they are suggesting ways to mitigate that with types of exercise that are known to reduce cortisol. It's a bit of a moot point, since exercise is also said to have a beneficial anti inflammatory effect, and a bit of a workout can be a great way to get rid of excess adrenaline and generate a few feel good endorphins. I'm not sure that it has any relevance to us with PMR, except that I believe that anyone would benefit from a little mindful exercise, within our own personal physical capabilities. Any kind of high intensity exercise is outside the capabilities of a lot of us with PMR anyway, partly because our muscles do not respond to exercise in the same way as a healthy individual, and secondly because most of us also tend to be older (often with existing medical conditions).
I confess I've only just found this and have not yet attempted to read more than the odd paragraph, but for those who can find their way through technical medical literature, this may be of interest:
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Basal Cortisol Test Result
Morning cortisol test results have arrived.
Basal cortisol test
Adrenal fatigue - very low Cortisol
Cortisol levels
