Coffee and PMR - friend or foe?

Hello to everyone,

Thanks go to you Eileen for the research. You're pretty good at it.

you recommend \"body swerving\" around the Koreanversion of coffee! :wings:

A question. The research says, \"coffee seems to have an immediate effect leading to a surge of cortisol production.\" Is that cortisol [b:cad2855eb6]production[/b:cad2855eb6] or cortisol [b:cad2855eb6]release[/b:cad2855eb6]? I think the latter.

My understanding is the same as Mrs K's. So the question is can this information about coffee be used to help the adrenals produce its own cortisol more quickly?

I'm intrigued by Andrew's experience with the pain reducing effects of drinking coffee at 2 am. Firstly because some websites state that that is the time natural cortisol production begins. Secondly because my friend who took only coffee enemas to reduce the pain of his cancer, usually had to have one about three in the morning to regain his comfort level.

One more thing. At the last lot of blood tests, I had one to ascertain my cortisol level. It had to be done before 10 am, then frozen immediately. Since I’d been awake from 3 am, I wonder whether the cortisol level is tied to the diurnal clock or that of the person. And since the cortisol production levels fluctuate greatly over (from memory) a two day cycle, the results become less meaningful. Sorry I haven't gone back and checked. I can't remember where I found it and my memory is so chancy these days that I do have to check most things.

Anyway for now I'm staying off coffee and tea et al; at least until the day I check out the effects on the cappucino again. Which begs another question - would the results be different if it were black coffee?

You paint a picture of the pain in your foot so graphically Eileen that it makes my stomach cringe. It might be understandable if it had happened when you did all that walking in Korea, though thank goodness it didn't. Have to tried chair dancing? It's a wonderful form of exercise.

Go well everyone

Jill48

Mrs K.

The relief came from the coffee NOT the Tylonol. I know this because Tylonol did nothing alone. I think I took the medication because it was there and offered some hope for pain relief [we all know the pain of untreated PMR in the wee hours]

My coffee is Colombian Special Blend, no cream, one sugar, a whole bunch of cafine, brewed in a Keurig single serve machine.

All your comments have me thinking seriously of trying to speed up my Prednisone reduction by increasing my coffee drinking. I will let you know how it works out.

Hi all,

Mrs K - I only ever take a couple of doses of ibuprofen in any episode. Both NSAIDs and prednisolone can lead to gastric ulceration and bleeding (ibuprofen has a shortterm blood thinning effect, aspirin a much longer lasting one) and that is why their use together is generally a no-no. However - in both cases the risks are there when you use them on a regular basis over a longer period. The mechanisms by which they cause the damage are different. I also only use the enteric coated version of pred - they are not absorbed until much lower down in the gut than the stomach and this provides the protective component for the steroids. The risk is likely to arise where someone has arthritis (for example) where the therapeutic dose of ibuprofen is 300 to 800mg a few times a day and on a continuing basis as the effect only sets in after a couple of weeks - to my mind a massive dose and one at which I would rather have the pain! If you were to use ibuprofen like that alongside pred you would be very likely to have trouble. Add to that the fact that for both of them caution is advised in \"older\" patients as they are more sensitive to many drugs than younger patients - and obviously the advice needs to be \"don't mix them\". One source I found said that IF they were to be used together in the shortterm then omeprazole or the like should be prescribed as well.

I've had 2 doses and my foot now is pain free so I can try doing some walking this afternoon to get that benefit! :lol:

And to our other discussion point - well, there have been some interesting things turn up! Other ways to boost your cortisol: high protein diet and exercise! I seem to recollect mentions by several people about how they feel better after either of those.

Jill - the production of cortisol in the body is part of a mega complicated feedback system which I would need to sit down and look at for a long time to work out how it might be explained simply!! It isn't a direct effect on the adrenals that leads to the secretion of cortisol but the trigger is higher up in what is called the hypothalamic-pituitary-adrenocortical axis (HPA axis for short). That's three different organs which are inextricably linked - 2 in the brain area and one in the kidney area. In the case of coffee, it's thought the effect is at the pituitary level, the pituitary hormone then has the effect on the adrenals to tell them to release cortisol. I don't think that there is a \"store\" of cortisol as such so there isn't a distinction to be made about production/release - the word always used is \"secretion\".

To add to the complexity - it is a mixture of positive and negative feedbacks. That means that in some cases the lack of something is the trigger, in others it is the presence of something that does the job. For example - like when you eat sugar and your blood glucose level goes up so your body sends in insulin to break down that sugar and keep the blood level stable and once it is OK the insulin delivery should stop. On the other hand, if your blood thyroid hormone is low, the thyroid gets the message to send in more. Return to normal switches off the supply.

As a result of this, cortisol is not produced at a steady rate leading to a smooth level in the blood. It has a diurnal rhythm being lowest at about midnight and highest soon after we wake in the morning (over one day, not two) but there can be other surges at various points during the day in response to stimuli such as mental tasks (mental arithmetic is a common test to see if you produce cortisol) or, as we've seen, a cup of coffee! In fact, cortisol is produced in response to most stresses on the body and it is the presence of these consistently raised levels that is thought to lead to the stress-related ailments seen so much in modern life. There is evidence that the peak in the morning is associated with the time at which you WAKE not with any other body-clock p

Eileen H...you are amazing with all your research which the rest of us get to benefit from :D.

I have found that since I have had PMR I have to restrict my coffee intake as it led to totally sleepless nights, but assumed it was a combination of the caffeine coupled with steroids, rather than the coffee having an effect on the adrenals. I limit myself to two mugs a day now at breakfast and lunch and that seems to work, as on the couple of occasions that I have had a Cappuccino after a late meal I haven't been able to sleep at all.

I am also on a wheat free diet..have been for about 4 years now. I am allergic to eggs, so would not be able to enjoy your lunch .

The range of wheat free products available has improved dramatically here in Ireland in the last few years, so I can now buy a very nice wheat free brown bread rather than have to make my own, and I can use wheat free pastas for making family meals & the rest of them don't notice any difference. Aeroplane meals are never great at the best of times, but I have found BA to be the best as regards a varied gluten free meal.

So many people now have Coeliac disease and wheat intolerance that one has to wonder how much our diets are ruining our health and just how many illnesses can be attributed to either over-indulgence or lack of certain food types in the western diet.

The alternative practitioner who finally diagnosed my wheat intolerance (having been fobbed off with the IBS diagnosis from \"regular\" doctors) was of the opinion that western europeans eat a diet that is much higher and dependant on wheat producs than our digestive systems were ever designed to cope with. If one looks at the diet of their grandparents, they will likely see that they ate potatoes, vegetables and small ammounts of meat and fish....they did not eat toast for breakfast then a panini or sandwich at lunch and pasta for dinner, which is quite the norm nowadays.

Certainly, prior to the PMR, and even with it, I am healthier without wheat than I ever was when eating it and I don't really miss anything except the \"real\" pizza that you get in Italy .

Keep up the good work and hope the feet aren't giving too much bother today.

Best wishes, Pauline.

Hi Pauline - ah well - you'll just have to come and visit me then as the pizza chef here in the village makes pizza with spelt (which I can eat), rye or with gluten-free flour and then does them as a perfectly normal pizza in the wood oven :lol: I just have to tell him at lunchtime for that evening.

BA - perish the thought :roll: - but be careful with flights out of GB as they use products including the gluten-free flour approved in Britain which is made from \"washed wheat starch\" which has had the gluten removed. It isn't approved by any other European country as far as I know, they all insist it has to be naturally occuring gluten-free ingredients so wheat doesn't get in. The best I've found so far is Finnair who we flew to Korea with but Finnland has a high incidence of coeliac disease too. It is also very common here - I assume because the arrival of wheat in the mountains led to a sudden overload of wheat in their diet after previously using buckwheat and maize. I even get to eat proper cake here as almost every bakery makes buckwheat cake with cranberry jam. I have a pasta machine and have made buckwheat pasta myself as most you get nowadays is made with wheat flour in it to make it easier to handle. We also get kamut rolls in the bakery - another ancient wheat variety that I don't react to! Korea was a dream for me - lots of food with no wheat once I identified the ones that were a no-no. You need to like raw fish though ... :wink:

Were you ever checked for coeliac disease? It gets more common as you move from east to west and Ireland has a very high incidence - it's to do with the migration of wheat from east to west and how long wheat has been a common part of the diet. Ireland came to the use of the stuff very late and then with a rush which is why they think it was a sort of sudden overload that caused the problem. I may have it but I didn't have gut problems just a horrendous burning rash and the local coeliac specialist was of the opinion that if I could control the problem by excluding just wheat that was fine and not to bother with the discomfort and indignity of an endoscopy! Some people believe that if you eat gluten with coeliac disease you are more likely to get colon cancer but he said he thought diet had nothing to do with it, it was more that the 2 genes concerned were closely associated and if you had one you probably had the other.

And thanks - the foot is much better today, now to get the steroids back down. I feel much better after a walk and lots of protein - no coffee though!

EileenH

Very interesting all this information about coffee and diet etc and how we are affected when we have an illness injury and stress

I am convinced my flare up in January was caused by stress I got myself into a complete state in the bad weather when we were snowed in and getting to my horses and frozen water was a real problem Normally I would be problem=solution but that wasnt the case !!

I am going to try gradually to have slightly less coffee ( as Ive said before I dont have huge amounts of coffee but every little helps and up my protein I just love my porridge for breakfast so would hate to give it up and I only have 3 small slices of low cal bread a day I never feel great if I have too much rice or lots of carbs in any form so that should help me to stick to the straight and narrow !! I need to get rid of this extra weight

Hope your foot continues to improve Eileen

Best wishes

Mrs G

Hello Jill and what an amazing amount of information from Eileen.

I have seen Dr 1 and he said that he did not know the effect of coffee on the production of cortisol. He suspected it was not great with moderate amounts of coffee. When I told him I was stopping coffee he replied \"Good idea, all life is a trial\"

Dr 2 will be interesting as he has been on heavy doses of pred for a few years (not for PMR though) and consequently takes a great interest in it.

I feel no different after quitting tea, coffee, orange juice and peanuts. Although I did sleep well last night which is unusual.

All the best to you all

That was a terrific piece of research Eileen and thanks for answering all my questions and giving a much more in depth understanding of cortisol and the connection with the brain. I'd no idea it was so complex.

The question is to what extent can we use that knowledge to speed up the recovery from PMR. Diet does seem to have strong effects. When I first got the dry cough in January, I found that there were some foods that I just couldn't eat. I threw heaps of pre frozen meals away. All I seemed to want was fruit and vegetables, nuts and seeds, a bit of yoghurt and eggs now and again. And there were many times when I just didn't feel hungry. That's when I started to lose weight. When the first lot of blood tests came back I remember feeling very apprehensive about my cholesterol level which had been extremely high (10.4) for several years. For some reason I felt I didn't need to correct it, especially as when I'd gone on medication in the 90's it had actually gone up. To my utter surprise my cholesterol had halved and was just 0.1 over the norm. That had to be the diet, cutting out all the carbs and meat and so on.

Not getting too stressed out seems to be another and if we can't avoid it how to protect ourselves from it. I think that means changing the way we respond, finding a way to stay balanced whilst in the middle of it - a lifelong task it seems to me. I did notice when I was meditating regularly my blood pressure went down dramatically and I was a lot calmer after some years of it.

Anyway going to let all this info just integrate a bit because I don't quite know what else to say at the moment except I'm grateful for all the wisdom on this forum. It should be a must read for all doctor and rheumatologists dealing with PMR.

Let's know what Doctor 2 says farmeroz.

Jill

Hi farmeroz,

And what was the expression on your doc's face as he said \"all life is a trial\" - given the number of ways you can take that!! :lol: I used to be quite convinced I was my GP's \"heart-sink\" patient - and told him so. He wasn't quite as dismissive as he might have been to Joe Public - since my husband was head of one of the diagnostic depts in the local hospital - but there was one member of the practice who really made me mad. The very first time I saw him he insisted on completing a screening that was overdue (by a few weeks) before dealing with the current problem so I had to wait for a second appointment a couple of weeks later. In the meantime he'd seen me at the midweek medical presentation at said hospital with my white coat and name badge on as I worked there at the time on a research project. The next time I saw him he was a totally different person (still had zero personal skills - never understood why he became a GP, forensic pathologist would have been more like it :roll: ) and whilst I am only too glad to play the colleague card when it helps, to be as obvious as that is REALLY rude to other patients.

Now - a doc who takes steroids themself - there's a find. Whatever it's for it can only be a plus in terms of understanding the problems with taking it. Looking forward to the report.

Jill - I had the dry cough too but I never went off food of any sort - unfortunately :roll: I did crave carbs every afternoon, I didn't know what, just something, and that, coupled with the enforced inactivity, really piled on the pounds. To compensate there has been little weight gain with steroids and the craving went within 48 hours of starting the steroids. And despite all the research I've done I can find nothing to account for that.

I've been freelance for years and so have avoided the normal work-stress (best boss I've ever had :lol: !) despite having clients who expect me to catch up their dillying around - er, excuse me, it takes a finite amount of time just to TYPE your document - how do you expect me to translate it too in half the typing time??? :roll: However - I had a fantastic year where I started with breaking my leg, had just got the cast off and able to drive again when my other half was diagnosed with cancer, his mother (who lived with us) decided he wasn't going to recover and literally turned her nose to the wall and died during one of his chemo weeks - oh, yes, and I had daughters of 10 and 13. I'm sure there was a low level of PMR going on then judging by the back problems I had that have disappeared on steroids but it really hit like a ton of bricks early last year after a TGA (a transient global amnesia) where I \"lost\" about 6 hours. I didn't find it distressing (I can't remember it :roll: !) everyone else did, and it's a great way of surviving A&E but within a couple of days I could hardly get out of bed. And what did that gem of a GP offer? Voltarol suppositories - I ask you :roll:

I can't get the hang of meditation - I wish I could. Pilates and Iyengah yoga classes with the right sort of teacher were BRILLIANT though. That's all I miss here in Italy.

cheers all,

EileenH

hey farmeroz,

I'm eating a lot of fruit under the impression that fructose sugar is apparently not too bad for you. Except from oranges but for a different reason. The gerson book mentioned only once that people with collagen diseases should avoid citrus fruit. I've not found it mentioned anywhere else but recall there was research on hyperactive kids years ago (the feingold diet) which found that you could control it largely through diet. One of the worst things was citrus fruit. Nowadays they medicate them. I love oranges - it was a real sacrifice to give them up

This on again off again spring is not so good for the PMR. Meant to ask you if where you are in NSW also had the coldest, dampest winter we've had here for a long time? And if so did it make the PMR worse? I had to buy a dehumidifier because the cold sweats were so bad. They didn't happen again once I had dehumidified the whole house.

Hi Eileen, I have a great respect for Dr 1. He was encouraging me to experiment after having said he didn't know the answer. We both laughed, I like him.

All the best.

Farmeroz : Yes - the doctor I saw most of the time and I used to sit and Google things together, I always felt a bit sorry for the next patient! I have far more respect for the one who admits they are beaten than the idiot who likes to play god or treat me as if I don't know anything. And the healthcare professional who uses baby-language to me gets very short shrift. :roll:

Jill - I find damp awful and can feel a change to it 2 days ahead even if the forecast is denying it. I hadn't thought about humidity and cold sweats as being associated though they were far worse in GB than they are here in northern Italy where it is generally less humid. I was enthusiatic yesterday and got the vacuum cleaner out and by the time I'd finished I was in a total cold sweat - yuk. Not sure which is worse - hot flushes or cold sweats! Depends on the weather I suppose.

And what is it about this year - has anyone had a nice season? My husband is in Kansas City Missouri this week and says it's high summer there still. I, on the other hand, would welcome the heating switch being flicked so I can have a warm bathroom in the morning. :lol:

cheers all,

EileenH

Hi all. Reporting in. You all seem to know it all anyway.

I seem to have improved quite noticeably

Dr 2 says that coffee is a stimulant whereas alcohol is a depressant. Therefore he would guess that coffee would if anything increase the feeling of pain (as opposed to alcohol deadening it). He like Dr 1 knows of no study linking caffeine to the production of cortisol.

Says important to keep moving even to the extent of sitting in a rocking chair. Suggests that for some unknown reason movement reduces the feeling of pain (of course the initial movement can be more painful)

(Coincidentally, I am reading a strange book called Pilcrow where a young boy's joints become almost fused as a result of lack of movement. not the subject for us).

The body has a 'factory' that produces cortisol. This is inclined to 'shut down' on high doses of pred as the body 'senses' there is enough in the system. It sometimes is difficult to get the factory started again when reducing to low doses so important to reduce very slowly. This is my understanding, and I think this is common knowledge to you all.

I have slept very well over the last 4 or 5 nights. I suspect this might be the indirect result of cutting down on coffee, reconstituted orange juice (sugar) and peanuts (?) and is the reason for my improvement. Which of them, if any, I don't know. If my improvement holds I plan to go back on to them one at a time and assess any effect.

I have have been taking a daily 20 min hot bath (to loosen muscles).

All my practitioners have said it is essential to do exercises to keep the spine supple (I have had sciatica as well which complicates the monitoring of the cause of discomfort)

Dr's guess is that the loosening of the spinal muscles which have become overly tight is a cause of the improvement

That is about all I can report. Thank you Jill for getting me started on this trial. We live in the central tablelands.

All the best.

Hello to all,

Very glad to hear you’re sleeping well farmeroz and hope it lasts. I’d be really interested to know what happens when you do your trial of coffee, orange juice etc. As so many have said on the forum, it’s at least as important and useful to record what people are actually experiencing in their bodies alongside the scientific measurements via blood tests.

I was also interested in Dr 2’s comments about rocking chairs and keeping moving. Nice to know that such a luxury is good for you. When at the sink scrubbing vegetables (a never ending task) I’ll often do a bit of light ‘Knees up Mother Brown’ stepping on the spot.

Well your weather would be similar to ours in terms of moisture in the air. We have another week of high probability of rainfall and cloudy skies. The early morning humidity is still up in the 80%. For this part of the country, this is highly unusual.

It would be interesting to know how damp weather affects other people, Eileen. PMR has only had a name (implying recognition of it as a disease) since 1957 and GCA since 1932. But I wonder if prior to that it was just regarded as the 'rheumaticks' and something that people got as they grew older. And blamed on damp weather.

It can't be a coincidence that there's a very high incidence of PMR amongst people of Northern European extraction, (of which I am one) given that in those latitudes there's such a high average of wet cold days. I think I read somewhere that 300 out of 365 days per year had rain or drizzle in some parts of England and Scotland.

The dehumidifier took 5.8 litres of water out of the bedroom which gets no winter sun, and 39 litres out of the whole house on the first run. We were registering humidity in the 90% during the nights. I have had no cold sweats since then and we have had a lot of rain. I wouldn’t be surprised, if this weather continues for a decade or so, to see a lush, green fertile inland Australia once again.

Keep well everyone - in spirit anyway

Jill

Hello Jill and everyone else,

Had an e-mail from a friend in Brisbane yesterday and her weather sounded just like here (Surrey UK) - drizzly, grey, temperature about 18! But she does have summer to look forward to.

So much to agree with - when I first moved to this part of the country I can remember being advised to go for the chalk hills of the North Downs rather than another lower damper area, \"very bad for rheumatism\". 50 years ago so no mention of PMR then!

Retired doctor friend, whom I don't generally discuss health issues with as it seems a good way to end a beautiful friendship, had PMR a couple of years ago. His only lasted 18mths or so (male?) but he told me last week that he was sure that the stress of downsizing to a smaller house after 40 years had started it! I had been having a moan about how it would make life easier if we found somewhere smaller to live - don't get me wrong, it's no mansion but we have had to accommodate 4 kids over the years!

I'm sure Mrs K at one point recommended a tot of whisky(?), brandy(?) as a great relaxant and pain reliever last thing at night. It certainly wasn't coffee! PhD son also agrees although he's a psychologist not a medico.

As for the exercise - I was so frustrated recently when I did something to my back, which I needed to keep pretty immobile. I sat in a chair waving my arms and feet around to try and move the bits I could. It's a question of working out which parts are OK at that moment in time, but,boy, did my thighs ache when I actually did start to walk a bit more! Hard to see what was PMR, or unused muscles, or even the back still spasming. You just have to listen to your body, same with what food suits you too I guess.

Let's hope for evrybody's sake the weather bucks up a bit! Anyone ever tried those SAD lamps by the way?

Green Granny