Avoiding coffee during adrenal insufficiency

[harpsichor]

I’ve had PMR for over four years now, and am now at 4mg of prednisolone per day. My rheumatologist will not allow me to reduce any further until Synacthen tests show that my adrenal glands are functioning again. I’ve had two Synacthen tests, the second of which showed slight improvement. I looked for ways of trying to stimulate the adrenal glands into working again, but there wasn’t much advice; but somewhere I read that you shouldn’t drink coffee (with caffeine) as this could prevent the adrenal glands from starting to function again. I have been drinking decaffeinated coffee for some time now and have felt quite bleary. The other day I accidentally had a caffeinated coffee and seemed to have a bit more energy. So am I needlessly avoiding caffeinated coffee?

[PMRpro Ambassador]

There is no magic answer - just a low level of pred in the blood at midnight-ish when the body gets its signal to start to get ready for the next day, a healthy diet and patience with the fatigue and listlessness of low adrenal function.

There is a lot of woo on the internet about "adrenal fatigue" and waking tired adrenals up. Your adrenals don't get "tired" from working hard or drinking coffee, it is a myth adopted by marketers for selling all sorts of things. I really don't see the point of decaff. Probably not too bad if you get one that is water-treated but there is always the risk of adding more chemicals than we have to contend with any way.

Enjoy your coffee !

[harpsichor in reply to PMRpro]

Thank you, I will!

[Gaz227 in reply to PMRpro]

I’m glad you cleared that one up PMR pro , so much on the net about not drinking or taking caffeine products when trying to reduce I tried decaf coffee for a while and just felt more tired than normal , right I’m off to Costa 👍😂

[PMRpro Ambassador in reply to Gaz227]

Just don't stock up on the red bull rubbish. And I can't imagine you will be drinking 10 double espressos!!

[Gaz227 in reply to PMRpro]

They have a carbonated drink at my gym that has 280g of caffeine in each tin , when I see people buying it I don’t think they realise the dangers of that much caffeine , I bet they are wired for days 🙈

[PMRpro Ambassador in reply to Gaz227]

I know - no wonder people nowadays are so hyper and irritable. And kids drink the awful stuff too.

[DorsetLady PMRGCAuk volunteer]

Does mention in this- but never changed my ways -

healthunlocked.com/pmrgcauk...

[harpsichor in reply to DorsetLady]

Thank you so much for finding this. You and PMRPro are both so kind to answer so quickly. I note that it says “cut back on caffeine” rather than cut it out altogether, and as I did feel a bit more awake the day I unknowingly drank some caffeinated coffee, I’ll continue with my breakfast mug!

[proactive in reply to harpsichor]

I started slowly making weaker coffee, so that I still get the soothing smell and ritual of my morning coffee, but less caffeine. Seems to work for me, although I am still reducing and at 7 mg of prednisone presently, so my adrenal glands my not be working properly again yet.

[PMRpro Ambassador in reply to proactive]

Oh no - the coffee has to be right, Can't be doing with seeing the bottom of the cup!!

[Zebedee44]

Thankyou for raising this topic. I am a decaf drinker, both coffee and tea, and I also feel bleary. I find one cup of full caff gives me a real boost and I feel great for a while, but any more than that and I feel wired, and not in a good way. If I drink too much caffeine in a day I have a really bad nights sleep.

It feels like a kind of hypercaffeination a bit like hyperglycaemia, followed by the return of the fatigue. At a lowish dose of pred and lazy adrenals I definitely feel the need for my caffeine shot, otherwise I fear I will turn into a dormouse ( as in Alice in Wonderland).

[harpsichor in reply to Zebedee44]

Yes, I’m the same. I rate my energy levels by giving myself marks out of ten as I go upstairs. The morning coffee has put it up to 7 or 8 mid-morning, whereas it’s about 2 when I drag myself up the stairs to bed at 9pm! But any more coffee than that first mug, and I also would not have a good night’s sleep.

[ReallyOriginal]

We are all different but I have been on strong coffee throughout my steroid journey and my adrenals are waking up now. As I was getting anxiety problems I tried cutting coffee out but it didn’t make a difference.

So I resumed my coffee habit and as long as I don’t exceed two cups a day it is fine

[Eggfarmerpete]

Hi, I am early on with my PMR journey having gone back to taking 15mg for the last 2months. I have now reduced it to 12.5 and will stay on that for another 2months. Then my GP wants me to reduce by 1mg at a time but over a 2 months period. You are down to 4 mg so if still stable I would carry on. Good luck and stay positive and keep mobile and fit.

Happy new year to all.

[harpsichor]

Very best of luck to you too!

[Darkchocolate1]

When I was first diagnosed with PMR and put on prednisone my rheumatologist advised me firmly that I should eliminate ALL caffeine from my diet. Reason being it interferes with prednisone’s ability to fight the inflammation. After 4 years off caffeine I don’t think I feel any differently a cup of decafe in the morning is most enjoyable. I can get an energy boost from fruit, especially a small piece of banana or half a cup of fruit juice.

[PMRpro Ambassador in reply to Darkchocolate1]

I imagine that must make your diet a bit limited - but probably much better. However - I'd like to see the research backing that claim because two can play that game and this study came to a different conclusion:

"These results suggested that caffeine is able to induce the expression of SP-transcription factors and affects the signaling pathways of glucocorticoids, amplifying their effects. Co-administration of caffeine and corticosteroids may therefore be of benefit in surfactant homeostasis."

pmc.ncbi.nlm.nih.gov/articl...

Look long enough and you can find a study to back your theory ...

[Darkchocolate1 in reply to PMRpro]

I never asked my Dr for proof about caffeine. I just took his word for it. I was actually off caffeinated coffee already when he diagnosed me and told me that. I won’t worry now when I eat an occasional piece of chocolate or diet soda. How many things do doctors get wrong? Thank you for your reply.

[PMRpro Ambassador in reply to Darkchocolate1]

Not saying it is wrong - just saying I'd like a reference before believing it.

[Italybound62]

I drink coffee regularly throughout the day even at night. No issues. I’m on on 4mg Pred (pending my next taper) and also take an adrenal support supplement. I feel great.