I am wondering if the difficulty in reducing the prednisone dose has anything to do with how your adrenals are functioning. It would seem that if they are struggling they won't kick in to produce the cortisol we need to compensate for the reduced dose. Any thoughts on this and if this may be true is there anything we can do to help them along naturally? Remedies or exercises or yoga???
Thanks
Rest and natural nutrition -- lots of green food and salads help inflammation. Not much meat -- salmon is anti inflammatory. Right amount of B-12 is helpful. It seems to help my nerve functions. NO STRESS, if possible.
I've had the same thoughts and I keep reading about adrenals. I also suffer on reduction and have triedso many ways. I'm at 7mg and keep trying,but the adrenals cause so many fuzzy feelings, my CRP creeps up. (STRESS) So, this past week I tried 6.75 instead of 6.5 and have felt much better. I'll get my CRP done tomorrow and see if this worked. When cutting the 1 mg, I have two 0.5 mg pieces, which I than cut again for 0.25 mg pieces ( not accurate but close enough). 5 mg + 1mg +.05mg + 0.25 = 6.75 mg.
After all the reading, the conclusion I've come to, is some peoples adrenals take longer to start. The last article I read spoke to age as a factor. And we all know about age and PMR.
I've done yoga for 18 years, stopped a year ago, I'm back to the lowest class with beginners ( grieving for more oh well). As exercise (cool in Michigan - 7 F right now) I jump etc to the TV most mornings.
Hope we this helps on your quest for calming those pesky adrenals. Please let me know if you find anything. I'm not to fond of taking any more supplements.
barbara
Hi Mrs. Mac,
This is dangerous territory because when I googled "stimulate the adrenals" I got all kinds of food quakery, magic solutions that are unlikely to work. The only thing that made a little sense was to consume some cholesterol-eggs/meat- since cholesterol is what cortisol is made of.
Nontheless it is an interesting question: why does it take so long to taper prednisone; How can we jump start our pituitary to stimulate the adrenals again.
I don't think anyone knows, but funny thoughts occur to me: cortisols are in part a response to stress- maybe we could really stress outselves by jumping out of an airplane and, with the excess fear, the pituitary would wake up!! I don't plan to try this idea myself.
This is one of the strange things to me because I really believe stress is the nasty contributor to PMR.
i always thought jumping from a plane would be fun but with a parachute😬
It is so crazy how we are all so different. I think it involves so many different body systems it would take a very long time to study . Hope it happens one day soon.
In the mean time we will share our successes and maybe find the secret formula👍
Good luck with your reduction and good luck with the yoga💕
Love your art work! 🍎 keeps the Doctor away!,!👼 or 👹
Hello Mrs Mac, have you tried avoiding coffee, sugar and alcohol - they place stress on those adrenal glands which are already being suppressed by the long-term steroids. So well worth avoiding, paricularly when on the doses below around 7.5mg where as you remove each small dose of Pred you are suffering a shortfall whilst the adrenals get back up to speed with their normal pre-PMR production. Hence the need to taper very very slowly at this dose and below. It can take about a year for our bodies to completely recover AFTER stopping steroids, but the slower we go with those reductions, the more likely it is that our bodies will recover faster as the adrenals recover. There are a few people whose adrenals do not fully recover and they remain on a small 5mg dose for life - perhaps those people had poor adrenal function before PMR struck but we will never know as it's unlikely they will ever have been tested. If anyone does find that they repeatedly fail to reduce successfully from round the 5mg dose in spite of tapering really slowly in tiny amounts, there is a test on the adrenals called the synacthen test - this will show whether the adrenals are producing their natural steroid (cortisol) or not.
Most of what you will find in the internet is quackery.
While you are at a higher dose of pred the body knows it doesn't need to make more. It isn't the adrenals as such that become the problem as we reduce into the territory where the pred dose is around 7.5mg. This is the amount it is felt is made by the body naturally - it may be a bit more, a bit less. In order to make it happen a whole range of hormones and other trigger substances in the body have be brought back into balance, involving the hypothalamus, pituitary, thyroid and adrenals as well as a few other endocrine glands. This takes some time to settle down again once it is being changed by the lesser amount of pred being present.
This is why we emphasise the importance of going SLOWLY below 10mg. The slower you go, resting at about 5mg again helps, the fewer problems usually arise with the return of adrenal function. In a small number of patients the adrenals don't start to produce cortisol properly again and they then need a low dose for life - as a replacement therapy just like thyroxine for hypothyroidism. Age may be a factor - and it may have happened anyway even if you hadn't been on pred.
Great question and again some great answers too. Bit like 'How long is a piece of string' and 'where do you want me to cut it?' I will follow is thread with interest.
I only have one problem - how can I survive without coffee, the occasional glass of red wine and meat? Help!!
My adrenals seem to be working fine - despite the (more than occasional) glass of red and meat a few times a week. Coffee not so much but I do drink it on occasion.
Reducing in an ultra-slow manner is just as good a way to persuade them back into action. It works for me without deprivation of the good life...
I'm in no doubt that I'm a coffee addict - left over from my work life environment when the coffee pot was always on the go and I drank gallons of strong black 'real' coffee - kept me going!!. As you may be aware, tea is not my tipple - maybe something to do with that happen in 1773!!
Back to reality - I have had very few problems with my PMR, most of it I put down to taking it slow and sure with the 'preds', reducing the stress and slowing down without stopping completely - all this advice from this forum - thank you. I have learnt to 'like' the 'preds' as they have given me relief from the initial pain, but at the same time spread the reduction over a longer period than I would have first liked to have done. It's back to my motto - the Tortoise and the Hare!
Hmm - US coffee is a joke by my standards!
That's why you need gallons of the stuff. One Italian espresso equals one cup of German coffee equals one pot of English coffee equals a gallon of the US stuff.
One of my husband's colleagues in Germany made coffee that was so strong that OH decided that he shouldn't drink coffee at home - and since then I never got back into the habit!
Eileen - I left the States many, many years ago! I drink Italian coffee at home - Lavazza Rossa or a well known Yorkshire brand at strength 6!! I agree US coffee is very mellow and to be honest I prefer a good cup of 'café expresso negro, por favor' when in Spain - they make possibly the best in Europe (sorry Italy!!).
Thank you for that information. I don't drink coffee but do like my glass of wine. Guess I'll need to make that a special occasion thing from now on.
I'll see when I get back to tapering at 7.5 how things go. I was great at 4mg last time but couldn't make it to 3.5. If that happens again I'll ask my GP for that test.
I find it a bit confusing that stress causes our adrenals to produce too much cortisol. You'd think the worry about how successful your reduction in prednisone will go it would kick in that response???
There have been a number of studies that "coffee is good for you", up to 5 cups a day. But reading the comments above, I wonder how strong that coffee is??
I am perfectly happy with American strength coffee, but do enjoy an expresso now and then. So I also wonder if the total caffeine in the two is actually the same, but more water is included in the American coffee. Anyone have any ideas?
Americano is generally two shots of espresso toped up with hot water in Europe, but coffee is generally weaker in the US as Eileen has already said. I got to a point, whilst working, of being addicted and getting a real 'high' or 'buzz' to get thru' the day - since retirement I have reduced dramatically but saying that I travel 7/8 miles into Southampton on the bus with my free bus pass, wander around the shopping mall (as exercise in the dry and warm !!) buy nothing, walk up the stairs (not escalator), sit down with an espresso or Americano read the free papers if available, watch the world go by, have another quick walk around and then get the bus back. Exercise and coffee ration for the morning at minimal cost - QED
Starbuck's coffee is good here, but you pay a lot for cappuccino, latte or espresso. I know that all German coffee is strong. I drink half regular and half decaf......but this combination of "java" is important to me to keep me going.......:-)
Sounds good!!!
By the way.....no rain here in Oregon....dry and sunshine while the rest of most of the country is in a deep freeze.
We love the sun here right now......like spring time.
Certainly posh coffee machines here (the ones that grind the coffee fresh) put 2 espresso shots into a mug and add water if you want "coffee" as opposed to "espresso". So they have the same amount of caffeine, just take longer to drink. In Austria a coffee always comes together with a glass of plain water, as does a glass of ordinary wine. Excellent habit I think.
People have been admitted to hospital with caffeine poisoning after multiple (over 10) shots of espresso but I doubt you could drink that many ordinary coffees. Could you?