Adrenal Glands, Paramyalgia Rheumatica and Predni... - PMRGCAuk

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Adrenal Glands, Paramyalgia Rheumatica and Prednisone

ZenSense profile image
12 Replies

I am a 74 year old woman diagnosed with Paramyalgia Rheumatica (PMR) in September 2021. I am interested in learning how the adrenal glands are involved when dealing with this illness. I have been prescribed prednisone and have now lowered my dosage to 10 mg a day. I have tried to get my dosage below 10 mg but so far have failed. The symptoms of pain, stiffness, fatigue and brain fog always return with a vengeance. I have attempted to endure this for 2 weeks or more, but so far have always given up and gone back to the 10 mgs. I hope to learn how the adrenal glands and prednisone interact so that I can reduce my dosage and finally eliminate prednisone altogether.

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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Here a couple of posts perhaps might help you understand your illness a little better - the symptoms you refer to are because you are going too low on your steroids for your illness, not the adrenals per se -

The first one is general info about your illness, the second about adrenals in particular-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

ZenSense profile image
ZenSense in reply to DorsetLady

Thank you very much for your informative and helpful article. I have recently started reducing my prednisone intake using the method mentioned. (2 days between, then 3, etc..) I am at 3 days between at the moment and it is going well.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to ZenSense

Good…long may it continue

SnazzyD profile image
SnazzyD

Hello, may I ask what dose step you dropped to under 10mg and did you do it in one drop, like one day old dose and the next the new dose every day? How quickly did the pain and fatigue come back after you dropped? Prednisolone is just a more potent version of your natural cortisol made by the adrenal glands. When you are diagnosed you are given a much greater dose of Pred than the amount of cortisol you make, so your adrenal glands switch off because they don’t need to work. Once the Pred dose drops somewhere below 10mg your adrenal glands need to start working. If they haven’t had to work for quite some time they can struggle to get going. The only way to get them to work is by gently being at the lower dose but it is a fine balance. However, if you are too low to control your PMR inflammation, that’s a different issue. Have a read of this from the FAQ’s and shout if you have any questions

healthunlocked.com/pmrgcauk...

ZenSense profile image
ZenSense in reply to SnazzyD

Thank you for your helpful reply. I have been dropping my prednisone dosages by 1/2 mg a time. I am trying the gentler intermittent approach, presently at 3 days at 9 1/2, 1 day at 10., etc. Also I had been pushing to hard to reduce my prednisone intake. I now realize that slow and steady is more likely to win the race.

piglette profile image
piglette

You are currently on slightly high a dose to have problems with your adrenal glands. The steroids supply all the cortisol you need over around 7mg. Below that there is not enough cortisol supplied by the steroids so the Adrenal glands have to start waking up again. As SnazzyD asks what dose are you trying to drop to from 10mg?

ZenSense profile image
ZenSense in reply to piglette

Thank you for your reply. I was dropping to 9 1/2 from 10 but I had been doing that drop and staying with that. I am now trying the intermittent regime (presently 3 days of 9 1/2 between 10. Early days but so far so good.

SnazzyD profile image
SnazzyD

Sounds plausible

PMRpro profile image
PMRproAmbassador

But prednisone doesn't raise cortisol levels - or do you just mean corticosteroid in general?

PMRpro profile image
PMRproAmbassador

"The symptoms of pain, stiffness, fatigue and brain fog always return with a vengeance"

Are those the symptoms of your PMR? The adrenal glands themselves have little involvement in PMR - it is an autoimmne condition in which your immune system attacks your body as if it were foreign. When you have polymyalgia rheumatica it is managed by giving a high enough dose to deal with the inflammation and then tapering down to find the lowest effective dose - you aren't heading relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. Early in the disease that is usually more than it will be later on and after eventually getting on pred, I never got reliably below 10mg for 4 years. I subsequently did get to under 5mg but then had a full return of the PMR before ever getting to zero so I don't know if that was then a second lot or a ramping up of the first.

I sounds to me as if 10mg is "your" dose for the present - although getting below that may work with a very slow approach to tapering, using what we call slowed tapers and very small steps down. However - last September to now is not long in the context of PMR and while tapering plans in the literature may say patients should get to 10mg in 8-10 weeks maximum, that is really quite optimisitic when you look at actual experiences. Half of patients take 18 months to get to 5mg - so 10mg after 10 months is pretty much on track. Unfortunately, it seems that trying to force yourself to get to a lower dose and having a flare of the inflammation often delays further downwards progress - there is no logic to it but it is a real experience.

The prednisone is a powerful antiinflammatory but it cures nothing - it is a management strategy to allow better quality of life in the meantime while the autoimmune process underlying the symptoms due to the inflammation is active. In well over 90% of patients with PMR it does eventually burn out and go into remission but there are no guaranteed timescales and it can be anything from a couple of years (rarely less) to much much longer. A few of us appear to have it for life. That suggests there are several versions of PMR - but no way of knowing which version you have. Higher doses of pred suppress adrenal production of cortisol - like the central heating switches off when the wood burning stove in the room with the thermostat is lit and burning. The body senses how much corticosteroid is available for it to use and isn't fussy about whether it is natural cortisol or pred from a tablet - it knows too much isn't good for it and doesn't produce more. But although natural cortisol does have an antiinflammatory action, it isn't the main factor in controlling PMR symptoms.

ZenSense profile image
ZenSense in reply to PMRpro

Thank your for your helpful response. I am pleased that I have found this website as I have already received so much good information.

ZenSense profile image
ZenSense

Thank you for your helpful response. I had been dropping my prednisone 1/2 mg at a time but doing that drop all at once. I recently started dropping from 10, then 9 1/2 for 2 days, then 10 for one day, etc. I am presently at 3 days of 9 1/2, then 10. So far this has been working well.

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