Coffee and PMR - friend or foe?

Hello Jill

I have tended to follow an anti-inflammatory diet through my journey with PMR and steroids, and the only coffee I drink is a cappucino as a very rare treat.

Aside from the PMR, I have only one kidney and that is now showing through a newish blood test not to be filtering out at the optimum rate. I have been advised by someone who has a transplanted kidney and who has therefore done a lot of research NOT to drink any coffee as it dehydrates the kidneys.

As far as the adrenal glands (which sit on top of the kidneys) are concerned, coffee makes the glands work harder to produce energy, therefore causing further depletion of the glands. As you have said, sugar also has an adverse effect on the glands as do some carbohydrates. Carbohydrates also exacerbate the weight gain which can be a problem whilst on steroids.

As you say, coffee is indeed a very powerful substance and it will be interesting to note whether you will have the same experience again should you be brave enough to try another cappucino! :lol:

I wish you well.

MrsO

Hi Mrs.O,

Yes, I will try it again, once isn't enough to be certain and we did have a return to cold wet weather during that period which could have affected the PMR.

Sorry to hear about the kidney - that must be a little worrying for you. It's in situations like this where conventional medicine and complementary medicine could/should overlap. It's a pity there are such strongly held positions by many practitioners of each ilk. But I do think there's a new breed of doctors who are comfortable with both. They've been nibbling at the edges of the more respectable complementary modalities for years. There are several doctors here who've had a training in acupuncture for instance. And even one I know who has learned a modality called Healing Touch.

All the best, hope the kidney function can be improved.

Jill

Intrigued by coffee experience.

I have been diagnosed with pmr since feb 2009. I was diagnosed immediately I went to the doctor (I seem to have been fortunate compared to others)

I have slowly come down to my present daily 3mg with the odd hiccup.

I have found it difficult to get off 4mg. Rheumatologist has advised sticking to 4mg until the end of winter.

I get up in the morning and have breakfast and 1 or 2 strong cups of coffee.

I have noticed for some time that I feel very tired after breakfast.

Yesterday I had 3 cups of coffee in the morning. I felt exhausted all day as well as painful. I put it down to over doing the activities.

I am immediately stopping coffee, orange juice (sugar) and peanuts.

Will advise of the results after 1 week.

Hi farmeroz, I'd be glad if my experience did help the tapering off process.

There's a a good powerpoint presentation on the Northeast PMR/GCA website called 'Treatment of Polymyalgia Rheumatica via Nutritional Therapy' by Jennifer McDermott which also has a list of adrenal supporting foods, vitamins and minerals as well as those to avoid. It's under the 'Health and Wellbeing' menu on the left.

I have no idea what sort of timeframe would be required. Good luck with it.

Jill

Hello

Yes I read all the thing about coffee and Adrenal Glands some time ago and tried to give up coffee Had the most apalling headaches for a day and gave up !! It just felt like a step too far at the time

I dont actually drink a huge amount Normally 2 or 3 mugs a day so I was rather surprised at the headaches but I now try not to have it too strong I drink decaff at night and might try and have a decaff at lunch as well I dont drink huge amounts of tea either 3 mugs normally does the tannin have a similar effect ?? I do drink lots of water

I did feel with the coffee as bad as a drug addict giving up drugs !!!!

Best wishes

Mrs G

Hello Mrs G, Sad news is that tea contains caffeine as well! As does CHOCOLATE! Life's not fair is it? Headaches are a very common withdrawal symptom, but shouldn't last too long. I have a cup of coffee first thing to get me going, but have been really trying to stick to the decaff. variety of both tea and coffee to help with the bad sleep. Chocolate's another thing but I find a small piece of the really dark variety goes a long way.

Re exercise etc. a couple of weeks ago I put my back out and it went into spasm -think tightly clenched fist the whole time. Dr gave me diazapam which I had years ago and which then worked like a dream to help the muscles relax.Whether it's the combination of Pred. and diazapam I don't know but I have felt like a mass of jelly, almost impossible to get the strength to move , and brain seemed to stop working too! Well, I am slighly over that now but the lack of movement, let alone exercise however gentle, seems to have really put me back. Anyone else had this? Dr. said not to put the pred. dose up at all - I am coming down from 9 mg to 8mg.

Weather's gone cold and damp here, all the best for spring in Aussieland!

Pam aka Green Granny

Thanks for advice Jill and all

One day without coffee and I feel fine.

I am going off tea as well

Will report in a week if still sane

Hi Jill,

I am thoroughly confused. Not an unknown event for us country types.

I have just had a look at the internet re coffee, steroids etc.

I think the same site says that caffeine stimulates the production of cortisol and then later advises reducing caffeine as it stresses the adrenal gland thus inhibiting the natural production of cortisol. This sounds contradictory but I am sure it can't be.

I am seeing a couple of doctors in the next few days and will take a notebook.

All the best

Hi Farmeroz and everyone,

I'm confused too. I googled 'coffee and adrenal exhaustion' and the 'naturalnews website was first up saying coffee depletes the adrenals. Then I googled 'Coffee helps cortisol production' and find '6 tips for reducing cortisol production'. Most of the effects however, from a quick read, are about the overproduction of cortisol as a stress hormone which is damaging to the body because with our sedentary lifestyle we don't use it up, when it's triggered, by action. Hence lots of bad effects as it stays in the body.

Just trying to get my head around this. I think what's being confused here is not the [b:d3979fadef]overproduction[/b:d3979fadef] of cortisol by the adrenals but the [b:d3979fadef]release[/b:d3979fadef] of too much cortisol into the body that is harmful. As in the Fight/Flight hormone. Which ends up depleting the adrenals.

But I'm not sure if I've got that right. Comments anyone?

Glad you're feeling fine off the coffee. And that's the hardest one to give up. It has more caffeine per dry weight than coffee but we drink it at a much weaker dilution.

It's nice having someone else who's awake at the same time as me farmeroz.

Go well

Jill

I meant to say 'tea was the hardest one to give up' etc etc Jill

Hello Green Granny (nice to hear from you again) and all

Yes it is unfortunate about tea as well At the moment I am going to carry on with my relatively small amounts of tea and coffee I drink I am not the sort of person who drinks endless cups if Im thirsty I would drink water The other thing of course is fizzy drinks but some you can buy decaffinated

I think we will have to get Eileen on this to explain the tecnicalities of cortisol under and over production !!

Did my first muscle rehabilitation class yeasterday and it went well and I definately had a spring in my step after !! I have also started my diet proper and intend to get back in shape before I am reduced to wearing black plastic binliners as no clothes are fitting !!!

Best wishes to all

Mrs G

Hi all!

Not going to go into the technicalities of anything here as I've just done a speedy surf to find some info:

There has been a small scale study which has shown that a moderate intake of caffeine in coffee (more than 300mg caffeine, about 3 large mugs worth) does lead to increased cortisol levels during the afternoon and evening and that at those sort of levels there is no difference in your tolerance when you are used to drinking coffee. If you are used to drinking a lot more then your body does \"get used\" to the effect to some extent but not entirely.

University College London has done a double blind study with 75 healthy young habituated tea drinks which has shown that drinking tea is good for you in a stress situation - it reduces the amount of cortisol secreted in response to the stress. I don't know what form the \"tea subsitute\" took (used so the effect of the associations we have with a nice cup of tea were minimised) except they made both real tea and the placebo looked the same and the scent etc aspects were made as similar as possible. There have been some studies that say black tea without milk is good, with milk is bad - don't know if that is the case here. The study leader said that he didn't know what it is in tea that is good, just something is! Adding milk reduces the amount of flavanoids in tea.

The caffeine question in tea/coffee: the amount of caffeine in a cup is dependent on the way the coffee is roasted and the coffee made. It is almost impossible to say that one sort of coffee will have more or less than another except by measuring the cup you are drinking! You can find tables on the internet that will give you an idea of which are likely to have more or less. Tea has less than half the amount of caffeine that most coffees tend to have even though dry tea has a high level of caffeine. The difference is in the way it is made - with far more water - and can be reduced even more by only brewing/making/wetting (whatever your term for tea manufacture in the pot :lol: ) your tea for 2-3 mins as the caffeine release is mostly after about 5-10 mins.

Whatever the case: coffee seems to have an immediate effect leading to a surge of cortisol production whilst tea has a longer term more soothing effect. Which I would suggest reflects the way we usually use them in the UK ????? Personally, I don't ever feel a desperate need for a cup of coffee although I like an espresso very occasionally and drink it black with no sugar! And it has no real effect on me! Doesn't stop me sleeping! On the other hand - try getting me out of bed without a cup of tea! But the last 2 weeks in Korea my intake of \"proper\" tea was restricted and it didn't really seem to make much difference - and I wasn't substituting coffee there as it is one item of food there I would recommend body-swerving. I didn't think it was possible to find something worse than the coffee in the USA!

If anyone wants to try without either - don't try going cold turkey! Reduce the amount of caffeinated beverage gradually over several days, substituting other things instead. If you feel a benefit living without caffeine it appears that at a later stage an occasional cup is unlikely to have any real detrimental effect if you want to indulge.

However - before you blame caffeine in your coffee for all sorts of things, you should also consider what else you drink. Most soda drinks have quite a lot of caffeine in them unless they are caffeine free. Of course the approx. 17 cubes of sugar in non-diet ones will lead to a fairish buzz :roll: but diet caffeinated soft drinks have as much as 33% more caffeine than their non-diet peers!! And both coffee and tea have a lot of other substances in them which are not clear what effect they have - good or bad.

EileenH

Hi all

Just a quick observation about the coffee question. When I first came down with PMR, before I was diagnosed and given Prednisone, my only relief from pain at 2.00 am was 3 extra strengh Tylonole, my recliner and a big mug of freshley brewed coffee. My wife thought I was crazy drinking all that coffee at 2.00 in the morning but it did provide some relief, I don't know how but it worked for me. I even use coffee when reducing, especially now I'm down below 5 mg again, I find if the pain comes back in the early hours, I get up and brew some coffee and take a couple of pain pills. Tough going to work the next day with little sleep but it's better than increasing the Pred.

Keep the wind to your back

Andrew

Hi odiecass!

Ages ago I wondered about the symptoms of PMR maybe being related to inadequate adrenal function for some reason - so that the use of steroids is dealing with inflammation at the outset but at lower levels is the difficulty getting OFF steroids something to do with the body not being able to compensate for the lower corticosteroid level in the blood? Normal would be the pred falling and, as the adrenals start functioning properly again, the body balancing out the blood level needed to function properly. If the response of the body to a good cup of coffee is to produce a bit more cortisol that would fit.

Trouble is, when I've been trying to reduce the pain was all day! What's REALLY annoying at the moment is that I've had to go back up quite a bit because the PMR pain is back in one foot which means any movement is agony. Everything else is not too bad - just my right foot feels as if it has broken glass on top of pebbles under it when I put weight on it :bruised: ! Not very encouraging to go and have some fresh air and exercise - I'm trying TLC and ibuprofen for a couple of days and see what effect that has!

EileenH

Here comes the query

As I understand it, longterm use of steroids reduces the production by the adrenal glands of cortisol to zilch. So the caffeine in the coffee would be an additional supply from a different source - and does one cup of coffee = 1mg (well looking as the different coffees, that is going to take some working out.

Oddiecass's experience with his 2am relief, would suggest he was getting his cortisol from the coffee, hence the relief. Wish he had tried it without the Tylonol (see FDA June 2010 for recall. Also it is not suitable for long term use - read side effects).

Eileen, when I started on long term steroids, I was told, in no uncertain terms, no NSAIDS. My Chemist won't hear of it when I ask for an over the counter medication and get them to check for compatibility.

I drink instant stuff as I drink less of it than my precious beans. Grrrr.

And on soft drinks anything containing Aspartame, forget it, FDA stopped use in States ages ago.