Coffee and PMR - friend or foe?
Posted , 8 users are following.
Hello to all,
I had an experience over the last couple of weeks which might be of use for people who are at the stage of tapering off prednisone.
After ten weeks of no caffeine at all, I had a cappucino. That was at 11 in the morning. I’d been up since 3 am but flew though the rest of the day easily, without naps, no lessening of pain but it didn’t seem to matter. I was even able to do shopping that had been beyond me the previous week. It was 10 pm when I started to feel tired.
The next day I crashed and stayed crashed for 12 days. I can’t be sure that it wasn’t a ‘normal’ PM flare which would have happened anyway, but my sense was that it was the coffee. Coffee is a very powerful substance. So I did a little fishing to find out how it worked.
Coffee and other caffeine containing foods, over stimulate the adrenals, which depletes them and reduces the body’s natural production of cortisol. So I’m wondering what would happen if people nearing the 7.5 mgs of prednisone, stopped taking caffeine containing food and drinks until they were off the steroids. Would it kick start the body’s own cortisol production more quickly? Would they get off the steroids sooner. Has anyone tried anything like that?
Funny how it’s all the good things that over stimulate the adrenals. Alcohol, sugar and chocolate do too.
I’d be very interested to hear what those who know a bit more about steroids and PMR than I do might think about this idea.
Go well everyone
Jill
0 likes, 35 replies
EileenH
Posted
Polymyalgia rheumatica (PMR) was first described by Bruce (1) in 1888 when he reported on five senior patients with a proximal muscular syndrome he called \"senile rheumatic gout.\"
\"The syndrome next appeared under the name \"humeroscapular periarthrosis\" in 1945 and later \"anarthritic rheumatoid arthritis.\" This later term was coined by Bagratuni (2) because he felt that such patients had a forme fruste of rheumatoid arthritis (RA). Two of the 50 patients he reported went on to develop RA and 8 others had transient swelling of various joints. He felt that the term anarthritic rheumatoid arthritis was more appropriate than \"polymyalgia rheumatica\" coined by Barber (3) in 1957. Finally, Healey (4) has furthered the concept of PMR as a systemic articular disease by describing variant forms of PMR which he calls benign synovitis and will be discussed below\"
Bruce was a doctor working in Strathpeffer spa in Scotland - no wonder he saw a few patients!
However the bit I took the quote from had a few other interesting facts in it - together with a list of abnormal blood results and how common they are in PMR. Elevated ESR in 99% - no wonder the docs are so hung up on high ESR! It appears under a listing of history - continuing medical education.
I've said in another thread a while back that what we have is what our grandparents put down to \"me rheumaticks doctor\" and accepted as an inevitable part of getting old. Our expectations are rather different.
On a slightly different note - I've just spent nearly a week on my own (husband in the USA) and eating a low carb (just veg and salad)/highish protein diet and this morning I was lying in bed thinking how much better I feel! I hope it lasts! I certainly never felt hungry and ate less than usual - and it may be imagination but I feel more \"shapely\" where the steroid abdominal fat accumulates :roll: . I also went to bed when I wanted, no alarm clock, and got up when I woke up and that seemed to make a big difference to the fatigue. I do remember that from before diagnosis when I often said that I could cope with the day better if I didn't get up until I felt like it which was often 10-ish. The stiffness seemed better too. It's getting over that initial hurdle to get moving isn't it - roll on the end of November when the ski season starts again. I have no problem finding the motivation then!
What a bizarre disease,
EileenH
Lizzie_Ellen
Posted
Take care
Lizzie Ellen
EileenH
Posted
Lizzie_Ellen
Posted
Jill48
Posted
You were talking about listening to your body Pam and a friend who’s been on pred for several years for allergies, told me the other day about the effects on her of a huge trauma she recently suffered. Suddenly she found that foods she’d liked before she just didn’t want to eat. Over a period of three months she’s lost 15kg.
The way she described it was almost exactly the way it happened to me at the end of January when the dry cough began. Out of the blue, I developed such strong revulsions for various foods that I had to throw them out. I would take a bite and almost be sick. It was a very physical thing as if my body was telling me what not to eat. All I could face was fruit and vegetables, a few nuts and seeds, yoghurt, an egg or two and no sugar. I wasn’t attracted to coffee but kinda forced myself to a cup a day. Couldn’t eat meat, couldn’t eat fish, or any grains other than buckwheat and quinoa, or any processed foods. That’s when I started to lose weight and it probably slowed down the diagnosis of PMR, because I kept insisting to the doctor that the weight loss was because my diet had changed and was normal.
Since I was diagnosed, the diet I eat now cuts out the nuts and seeds, and I can have porridge. A couple of slices of unsalted rye bread a day is optional (to balance protein requirements). I often don’t want it. And I’ve doubled the weight loss on that. I am now within 2kgs of my ideal weight for age and height.
So it’s pretty much a salad and veg diet Eileen like the one you’re enjoying while the man of the house is away. I’m not surprised you feel you’re slimmer. You probably are! Wouldn’t it be amazing if all that was needed to do dramatic healthy weight loss for everyone was a well an organic vegan diet for a few months? The gerson diet I do is carefully balanced to satisfy protein requirements. I think care would need to be taken to make sure you didn’t become malnourished without the animal protein.
Right now I seem to have a lot more energy and haven’t had to sleep during the day for three or four days. That’s probably because I’ve got the iron supplementation right after several tries of various preparations that didn’t work.
Jill
:P