I have been wondering over the last week or so if there has been any research conducted regarding this subject.
Is it the case that someone who is a large framed individual, weighing say 100 Kg. will have the same response to a measured dose of prednisalone as asmall framed individual weighing say 60Kg?
The reason I am asking is that I am having big problems reducing below 12.5mg.
I can drop to 10mg. OK and I seem to be able to manage at this level as long as I stay very relaxed and rested. However if I get any stress or do just slightly too much I get headaches and neck pains returning. Removing said stress and physicality does not alleviate the symptoms and I have to go back to 12.5mg again and start the reduction again.
Can it really be that my "maintenance" dose is as high as 12.5mg?
My doctor is of the opinion that this is too high and would like to see me at around the 7.5mg level. I'm sure he has my best interests at heart as he wants to try to reduce the chances of the worst side effects.
I am only currently 6 months or so into this nightmare.
I like you am 6 months into this illness PMR started on 15 preds reduced to 10 yesterday . I reduce .5 at a time when I feel I am ready under no stress from GP to reduce quicker.
Sometimes I am on the same dose for over a month sometimes shorter.
I work full time and a heavier lady I know sometimes heavier people need to start on a higher dose but no more than that.
At 15 pain disappeared within 3 hours however I did have 4 months of sick .
I think their is no rhyme or reason to this illness it has a mind of its own comes when it wants and will go when it wants .
I think you are absolutely right about weight and dosage. My vet always weighs my dog before prescribing anything. It is totally logical that a larger person will need a higher dose. I cannot understand why vets do a calculation every time they prescribe but GPs give the same dosage no matter what size the person. I cannot seem to reach the lower dose of pred and I am a larger person.
Every med you give an animal is weight related from worm pills to painkillers, antibiotics to flea protection. It seems such an obvious necessity but, apart from anaesthetia, does not seem to be the same for humans. Perhaps there is a good reason but I can't think of one. Hope you feel better soon x
I've no idea whether there has been any researcxh into this issue. However, tho' I have a small frame, I AM overweight, 12.5 stone, BUT I always have to take at least half the recommended dose of all drugs, & it's not just because I'm elderly tho' that is a factor ! So, tho' body mass may well influence the dose tolerance, there certainly are other factors involved. For example, if you suffer discomfort after physically resting for a few days, it's reasonable to assume that you may be a bit 'stiff & aching' if you then do physical exertion because you're using muscles not used for a time. Also, with prednisolone, we are 'messing' with our own endocrine system & it's functioning, so excitement & stress & emotions are involved & we have to accept that our body needs time to adjust to having to produce the natural hormone again rather than being dependent on the tablets. So, we all respond differently to different drugs. Recent research has also shown that we may respond to drugs dependent on our genotype ! Like everything in life, it's not just ONE factor which is responsible ! Sadly, also, once we have a conition associated with inflammation or damage, it's perhaps unrealistic to expect ANYTHING to take away ALL the pain. It's a question of how much we are able to tolerate & consider 'acceptable' & so attitude to pain comes into play ! Haven't we chronic pain sufferers 'got used to it' with time to some extent ?
There are certain drugs that absolutely need to be prescribed taking into account body mass but for the majority it doesn't matter once you are over a certain weight.
Paediatric doses are worked out on weight. I suspect it's the same principle for vets, you wouldn't give a puppy the same dose as a full grown adult dog. At the upper end of the adult weight range even drugs that are calculated using weight have a cut off point as higher doses can lead to toxicity not better tissue penetration.
I note Kate Gilbert in her book (pge 38) mentions one study demonstrated "that being of lower weight being an indicator of better results with steroids". She goes onto to say that one European specialist calculated starting dose @ 0.2mg per day for each kilo of the patient's weight. Therefore a small person weighting 50kg would start on 10mg per day & a large person of 100kg + 20mg per day.
The International PMR guidelines group still in discussions on these initial doses but made perfect sense to Kate Gilbert.
A study in Italy looking at the lowest starting dose in PMR came to the conclusion that 75% of patients would respond well to 12.5mg within a month so you might as well start there as it also reduced the cumulative dose (which is the thing they are looking for, i.e. you can be on half the dose for twice as long before you get to the tipping point). They did notice that the people who responded best were the slighter built women compared to the larger men with a lot of muscle mass.
It used to be said that dose should be based on skin area - no idea why - and that varies less than weight/muscle mass. In the past they often started at 30mg in PMR - then the fear crept in about the total dose people were getting and they looked at recommending using lower doses - for the reason I mentioned. They dropped it to 15-20mg max on the grounds that was high enough a dose to work for the vast majority of patients - well above what you are looking for at the end which is the lowest dose that manages the symptoms as well as the starting dose, which ideally is IRO 7.5mg, which is what is called a physiological dose, about the same amount as the body produces on a daily basis as being essential to life.
Last October the most recent "Recommendations for the Management of Polymyalgia Rheumatica" were published by EULAR and the ACR (European League against Rheumatism and American College of Rheumatology). In it they have now revised the dose recommendations AGAIN - back to a higher starting dose: the lowest effective dose between 12.5 and 25mg (30mg max) and reducing to 10mg within 4-8 weeks. They also say to use a higher starting dose in that range for patients at high risk of relapse and low risk of adverse events.
For most people that will work - but anyone who has a very active underlying autoimmune problem may have difficulty reducing. It is absolutely clear to me from the 3 forums (and a bit of common gumption) that anyone who has to work or who has higher expectations of what they will be able to do will require a higher relative dose. An absolutely crucial aspect of managing PMR is the pacing and resting to get the best out of the drug management - if you do too much, especially without building up to it gradually, your PMR-battered muscles are very likely to protest.
It isn't clear what it is that the autoimmune disorder is actually doing - and it is perfectly possible it is a mitochondrial problem, I don't know though. In which case the pred isn't doing anything for the CAUSE of the poor muscle function - so while you don't HURT as much perhaps, your muscles still aren't able to function/exercise particularly well. They can achieve some improvement - but you can't ask them to do too much.
And I have to add my usual mantra: everybody is different.
One more point: are you trying to drop from 12.5 to 10mg overnight so to speak? Many people struggle with that sort of drop, it's a 20% change in dose and top experts in the US years ago said a reduction should be less than 10% of the current dose for least problems. Some 5 or 6 years ago on another PMRGCA forum we realised that some people struggled to reduce even at doses of 20mg - and suggested 1mg drops which worked for the individuals concerned. We'd been suggesting a phased drop below 5mg anyway - and tinkering about we found the slow drop worked for lots of people who struggled:
Having read through the recommendations in the linked document the one thing that stands out is the fact that They say starting dose should be between 12.5 and 25mg. But make no recommendations as ti what criteria to use in ascertaining the level for each individual patient. I realise this document is aimed primarily at health care professionals but you would expect some guidelines surely?
They don't listen anyway - "Guidelines are only guidelines" (i.e. implied: to be ignored) I quote ...
I think the idea is probably to start with 15mg, not be afraid to increase if that doesn't work immediately and to be willing to go up to 25 but not above 30mg. And there is no point starting low and creeping up - something we do come across.
I have to say - I do wonder whether going in hard with, say, 25 or 30mg for a week and then reducing to 15mg quickly probably does have some value. People who have had PMR twice with higher doses the first time and did better have said that. And pussy-footing around with too low a dose really doesn't appear to work well.
You are clearly a great source of expertise, factual information and research on the topic of PMR. The more I dip-in to your blogs, the more I learn about this complex process and appreciate your wisdom.
In my case (about 12 months ago), and after being suddenly, literally 'crippled' for several weeks, I prompted my GP about the possibility of PMR following my own research into the symptoms on 'big, bad, google' (as you describe). He immediately put me on 30 mg Pred per day with a recommendation to (q) 'reduce by 5 mg per month and see how it goes'.
That was it: I took the tabs and trusted my GP's advice, just to get out of the nightmare of being so suddenly and scarily incapacitated by PMR. Within a couple of hours, I felt like 'new' again, and back to my normal fit and lively self. Little did I know what was to follow, in terms of the steroid reduction journey. 12 months later, I'm still learning about the entire process.
"Little did I know what was to follow, in terms of the steroid reduction journey."
Presumably when you went from a dose at which you were fine to the next, 5mg lower, where you weren't? And had to start from the beginning finding out for yourself what some of us here learnt or worked out a few years ago and now hope to teach others!
GPs see pred used in that way in many patients, hit the inflammation hard and reduce quickly because steroids are such "dangerous drugs". Used properly they aren't - but there is a difference in that PMR is a chronic illness with new inflammation being created on a daily basis so you can't head for zero and stop. But they are so scared of the stuff they try repeatedly to force reductions, create flares and get in an absolute mess. In the English-speaking world they have this idea that PMR only lasts a couple of years - and, honestly, I have no idea what it is that persuades them of this. It's not a concept I come across here at all. And interestingly too, while the incidence here is far lower than in the UK and certain parts of the US, there is more research and interest on the part of the doctors, and not just rheumatologists, in the patients who have it. I wish I knew where the difference lay.
Initially, the preds prescribed by my GP (30mg pd) had a miraculous effect (as seems usual). Within hours I was liberated from the paralysis and feeling like new. Early (periodic) drops of 5 mg pm didn't create a severe reaction but I hit the wall at around 10 mg pm. Extreme, deathly fatigue was the worst symptom - the type of fatigue that any amount of rest or sleep didn't alleviate.
An initial referral to a rheumatologist confirmed 'straight' PMR, possibly due to or concurrent with a nasty bout of Community Acquired ('Walking') Pneumonia: which I suspect I had contracted whilst on an international flight a few months before.
When I hit the wall at 10mg pd-ish, I re-visited my rheumatologist (supposedly a specialist in PMR) for his advice. All he could offer was to hike the dosage back-up a level or two, stay on it, possibly for as long as 12 months, and 'be patient' (excuse the pun). He said he'd heard this advice from a fellow professional, and that he expected me to have PMR / be on the preds for about another 6 months (18 months in total). No discussion about tapering methodologies and rationales, none of the valuable stuff I've learned about here. Again, that was it - signed off and a hasty goodbye.
That's when I dipped deeper into PMRGCA uk and this forum (thankfully). As you say, PMR isn't a 'sexy' illness in terms of attracting research funding since it's a Cinderella health condition. And, for good measure, in the UK, many NHS GPs and Consultants are either up against the wall in terms of the time and resources they can apply to non-critical illnesses, or just not very knowledgeable about PMR. You don't say what part of the world you are in, but clearly things are very different there.
I live in northern Italy, the German-speaking bit. I'd say our health care system is about 15-20 years behind most places in having financial problems. They do have a doctor-shortage problem and waiting times are increasing - but the system encourages people to be more independent. You don't go to the GP (turn up on the day and wait) for something you don't need a prescription for in the expectation it will be cheaper than going to the pharmacy - the drugs available on the health service are restricted, you can have brand names but you will have a co-pay unless there is a good reason (like delayed/sustained release formulations). GPs also don't have silly numbers of patients and they deal with you properly the first time - no going back 5 times to get the right answer because of lack of time. Those are behaviours you see from the tourists - in A&E too so they started charging for A&E visits, unless you were admitted (no charge) you pay 15 euros. So you don't go there for an aspirin or sticking plaster because they are cheaper from the chemist.
My suspicion is that you might be one of the approximately one third of patients for whom a higher dose of pred is needed because you don't absorb/metabolise it well. When you got to 10mg you hit your physiological dose - the equivalent of what your body makes and needs in the form of cortisol to function and that was the cause of the fatigue. You'd been on a high enough dose for long enough for your adrenal set-up to be sluggish and dropping 5mg is a big step as you now know. And I'd bet you are using up more cortisol than I do!
Thanks PMRpro, you are a goldmine of useful and trustable information
Interesting what you say about your local healthcare system, it explains a lot.
In my case, I've always been fit, strong, sporting and active ('action man'), eat healthily (although, ok, a good capacity for dry red wine and a light smoker). I've always been resistant to taking meds unless absolutely necessary - even avoiding paracetomol for occasional headaches / back pain. I've taken more prescription drugs in the last 12 months than in my entire life. I don't like it!
Recently I'm feeling less tired, more lively, and now down to an average (and gradually reducing, using Escalator / DSNS) daily pred dosage of 6.5 mg pd. Despite the above wisdom, my mind / body are telling me to get off it asap or at least speed-up the process, since I wonder if the symptoms I am getting (which I understand replicate PMR) are as much or more due to the meds than the condition itself? Am I being too 'im-patient'? (excuse yet another medical pun..)
If my physiological dose (i.e. 10-ish mg pd) is what you suggest it might be, what would you say are the risks of speeding-up the reduction process at these levels? As some report here (and I've tentatively suggested in my article), the fear of the consequences of reducing can cause people to get 'stuck' at a perceived safe / comfortable level (which might be higher than needed): and, in my experience, the resulting anxiety can be as psychologically wearing as the physical symptoms of (cautiously..) exploring the lower limits. Mmm, I may be on the wrong track here but welcome your thoughts.
p.s. should have said: early step-down reductions at 5 mg p/month from 30 mg pd, then smaller step-down reductions of approx 2 mg p/month when getting down from 15 to 10 mg p/day. That was when I hit the wall...
Markbenjamin, as I get to lower levels I've become very aware of the effects of tapering. At every level below 7 (now at 5) I've had at least one day, or maybe two, when I'd wondered whether I was experiencing the return of PMR symptoms. Like you, something is telling me to get the pred dose as low as possible, if not entirely zero, so I hang in there, and I start to get better. So the discomfort I've felt so far must be pred withdrawal. At no point did the niggles continue to worsen. When I was first reducing, before knowing about DSNS, I found at 9 that as a week went by the discomfort got worse and when I found myself feeling really stiff as I got out of a chair I knew I'd "hit the wall". I returned to 10 for a few weeks, then started DSNS. The process does seem to be achingly slow, but as has been pointed out, "It isn't slow if it works".
Thanks for comparing notes HeronNS, your post is fascinating and has prompted me to think (not always a good idea!). I'll explain why, later...
First, our experiences sound very similar at a number of levels. Your post reminds me that a few months ago, when dropping from 12mg pd to 8 mg pd (in what I thought were realistic monthly step-downs of 2 mg), I had a really nasty few weeks of awful fatigue as much as anything else. Very similar trajectories...
I checked my diary and see that I went back to 10 mg pd for a while, and things levelled out pain / fatigue wise. This was before I dipped into this forum, learned about DSNS / coined the Escalator term for my (unwitting) variant on it, and put it into a personalised 'plan'. A bit like you, I'm now at an incrementally reducing 6-ish mg pd and doing relatively ok symptom-wise compared with previously.
On reflection, maybe I should have called the 'Escalator' the 'Ski Slope' since that's even more of a progressively shallow gradient. Hey ho, either way, so far, so good.
Ok: this is a long-shot at a theory about the physiological / psychological dichotomy in the PMR ' steroid-tapering process, but I welcome your or anyone else's opinion on it:
When at relatively high steroid dosage levels and the adrenals are 'swamped', we are in a heady state of euphoria and physical relief from the crippling PMR symptoms: and have no reliable 'cognitive' reference point in terms of evaluating these vs. possible steroid withdrawal symptoms in the overall equation (if you see what I mean?). We just enjoy feeling so much better and make the most of it..
As we get down to a lower, more critical balance between the two in terms of dosage levels vs. whatever symptoms / reactions we are experiencing, maybe something in our physiology (and psychology?) starts to intuitively understand and differentiate between what we have come to accept as a 'tolerable' level of PMR symptoms, and the very (but not exactly?) similar but less tolerable (by now) steroid withdrawal symptoms. At first, it feels a bit like the 'lesser of two evils' (physically crippled for 2 years, or take steroids with all of their consequences and have some quality of life). But later, it's a case of 'ok, let's choose between these two similar-but- differing evils now that I have got to know each of them better'. A bit like with identical twins, there is always a difference under the surface if you look hard enough..
Although not a conscious exercise in the mind, and assuming that most of us try to be reasonably objective about our circumstances and the respective causes and symptoms of these 'dual but differing demons': perhaps (and I stress Perhaps), something in our physiological self is sending a message to the psychological self (feelings / perceptions) saying: 'hang on, it's the drugs, and not the PMR, that are making me / us all feel so bad now..'.
And then, of course, we have the dilemma of trusting our instincts, for better or worse (but what's new in Life?!)
With the usual Disclaimer about being any kind of expert, but with a lifelong passion for understanding the Human Mind:
I'll put my a small drink (French Red please!) on the idea that PMR and the steroid tapering process dichotomy isn't, always, entirely about the physiological and pharmacological factors. To my simple logic, and to quote an old phrase, 'Mind and Body' are One in many ways: and they can have very powerful conversations with one another in the health / illness / recovery equation.
That's it. I'm suffering from 'Brain Frog' (?) now but hope this might stimulate some positive thoughts and responses.
I'll end this post with one final thought: 'Laughter, together with a feeling of Community, can be one of the most powerful medicines of all'.
One point - I decided quite early on that there had to be a reason I got sick, and there was not going to be any point just taking pred and hoping I would get well and never be sick again. The high incidence of relapse got me wary. So I'm actually doing a fair number of other things as well as taking (and tapering) pred with the hope that eventually I really will be well.
Thanks for your feedback. I can relate to what you say: in my case, the sudden (?) onset of PMR followed a period of physical and emotional 'load': trying to be my normal 'action man' self practically, as well as taking on some demanding professional / consultancy work with much international travel, and all that goes with that seemingly glamorous type of lifestyle.
I'm sure you're right: at the same time as taking the medicine, for some health problems, we should also look at the (likely) causes of them in terms of past and present lifestyle and potential Stress factors. It's Mind and Body stuff!
Many thanks again, fingers crossed for you and let's stay in touch.
PMR came on for me after returning to work after recovering from a broken leg (which accident had resulted in the loss of about $18,000 paid towards a trip we had to cancel but discovered we weren't properly insured). At the same time I was getting ready to retire and planning an addition to our house that we were going to move into while my daughter took over the main house. Undiagnosed I carried on, retiring just before a winter from hell which rendered me practically housebound. Cancelled the house and my daughter moved about two thousand miles away. Finally after about 14 months got diagnosis and treatment. At least dealing with the double headed dragon of pmr and pred has given me a purpose in life. 😉 🐉🐉
Thanks for all the replies.
I"m not reducing overnight from 12.5 to 10 bu,t it a slow controlled way. Whilst on holiday, relaxed and doing very little for 5 weeks, the 10mg worked fine. Once home again I need to return to 12.5 due to neck and head pain, at which point all pain disappears. Strange as i don't exactly have a stressful life. I'm retired and living in Cyprus.
I'm beginning to suspect our bed!!! or maybe my pillow!!!!
The head pains are weird. It's not exactly a pain more of a "fogginess" I find myself grinding my teeth a lot because of it. Its more painful if I shake my head.
Do you think you maybe are grinding your teeth at night? That could be an answer. I found a new mattress made a big difference at one point and I really struggle with "strange" pillows!
And my back and neck problems improved on a long term basis when I had a squint wisdom tooth removed - it was affecting my bite and making my back muscles go into spasm every few months, whatever was done. No tooth, no bad back (well, nearly and it is dramatically better than it was).
Hello Beekaykay, thanks for a thought-provoking question.
First, I must stress that I'm neither a health professional or a pharmacologist (!): but your question makes a lot of sense in terms of individuals' varying tolerances to, and their abilities to process any form of medication based on their physiology, apart from a myriad of other factors.
In my recent posts about PMR and the hazards of steroid tapering from my own experience, I recently put forward what I thought was a potentially more intelligent methodology to 'taper' smoothly and gradually, based on a more mathematical approach to steroid dosage reduction as opposed to many mainstream ones. Although I can't take credit for the underlying principles, to my surprise, this has sparked a huge and positive response.
Your input raises the possibility of another variable 'parameter' in plotting and managing the steroid dosage reduction process. As you suggest, factors such as weight and BMI (body mass index) could be as significant a factor in determining the most suitable steroid dosage / reduction trajectory / absorption rates for an individual with PMR as are the more usually considered (but possibly narrow?) parameters such as age, gender, ethnicity etc.
I have done gite a bit of "experimenting" with dosage and the two different forms of prednisalone in the short time I have been taking it. (Must be my engineers mind)
One thing that I am convinced of is that the coated tablets (at least in my body) are either not as efective or don't last as long, as the uncoated variety.
I realise that they are the same drug just designed to be absorbed in a different part of the gut but I have done the experiment of swapping from one to the other a couple of times now and It certainly appears that this is the case.
I'm just thinking aloud here.
I assume this different absorbsion is possibly due to different metabolic rates in individuals. It seems perfectly feasible to me that if your body expels waste at a higher rate than "normal", then a tablet that doesn't start to become effective until it is well on its travel through the digestive tract is possibly going to be expelled before total absorbsion. This may also be further exacerbated by taking PPI medication, which reduces production of stomach acid I believe. This reduction would presumably increase the breakdown time of the coating.
I mention all this because it introduces more "variables" as people use these 2.5mg tablets in their reduction regimes.
In my case at least I think I need to choose to one form of the drug and stick with it.
I don't believe there is a "one size fits all" formula for this treatment regime. I also don't believe that doctors have the time, resource or expertise to tailor plans to individuals needs.
Hello beekaykay. Thanks, (with the usual disclaimers..) what you sasy makes sense in terms of absorption rates and the myriad of factors that influence them, including table type etc. I agree, this is bound to increase the number of variables in the equation: how many could we end up with?!
I also agree with you about 'one size fits all' and GPs' expertise and resources (or lack of..). I guess this is why so many GPs opt for the safe compromise of starting with high dosages, especially where the possibility of GCA comes into things?
From what many people seem to say here, and due to all the possible variables in the process, it seems that the only person who can really evaluate any tapering methodology effectively in their own context is the PMR patient, and how they respond - it's a very personal thing.
As for methodologies, it certainly seems that DSNS and the Escalator ( my inadvertent variation on the same theme) are more progressive ways of smoothing out the tapering gradient and also give the patient more input and control in the process: and allow scope for fine-tuning the various parameters if it doesn't go to plan. Somewhere in PMRpro's excellent blog there is evidence from a patient-research study to support this.
For me, at least, having some input into, and a sense of personalisation / control in my tapering plan (as opposed to blindly following an externally, arbitrarily set one) gives me greater confidence in it: even if there are some bumps and jolts along the way. As mentioned in my article, surely there must also be a psychosomatic element (if only slight) in how we cope with this complex process and all the uncertainty / variables that go with it?
Just to say I've replied to beekaykay - I never know if people see other responses on this forum format! I can't tick any more boxes for notifications but still miss some!
There is a very basic difference between the white stuff and the enteric coated stuff: the white tablets are absorbed within 1 to 2 hours from the stomach, the enteric coated stuff is absorbed over a much longer time as the coating starts to be broken down in stages.
If you draw a graph of the blood level, you find with the white uncoated version the level rises quickly and then tails off as it is excreted from the body over the following hours with a half-life in plasma of 2-4 hours. So even there you see differences - in some people it takes longer to get there, in others it takes far longer to go away and obviously you have everything in between. With enteric coated you see the blood level rising more slowly - like a gentle hill rather than a steep cliff and then it falls away with a similar half life to the white sort. Both beginnings can be considerably affected by food and what sort of food is present. Overall though there is probably more present in plasma for longer although at a lower peak level with enteric coated - though I assume the area under the graph is much the same. The question is: how significant is that peak level? Does lower for longer have the same effect? And that is another place the different patient dynamics will have an effect.
We'll just ignore the other bit about prednisolone being the active form and immediately active whereas prednisone must be processed by the liver - and everyone's livers tend to be a bit different in terms of efficiency. Or the combination of other medications you may be on which can also potentiate (or otherwise) the effects of any of them.
So the usual concept is you start with a dose that is plenty for anybody and then reduce to find the lowest dose that achieves the desired result. The dose related to body weight is less important - because you start with an excess and then titrate downwards to find the ideal dose. Titration is a technique that is often used in adjusting dose - more often it is upwards so your body gets used to the new drug and you find the level that works at the same time. That isn't a good way to go with PMR and really not with GCA where you are hitting hard with a massive excess of drug to reduce inflammation and swelling as quickly as possible before the thing you are desperate to avoid happens: visual loss.
If you juggle the enteric coated and ordinary versions you may find a very good mix for you - say you take your enteric coated at night and then the balance of the dose with white tablets in the morning or even later. The slow release of the drug from the enteric coated sort allows you a relatively pain-free morning and you can top it up at some convenient point to last through until the evening. It's the same as splitting the dose because for you the antiinflammatory effect doesn't last the full 24 hours - since it can be from 12 to 36 hours depending on the person. Graphs again - the good old bell-shaped curve.
I'm sure I've forgotten something I meant to include...
PMRPro, Thank you one again for a very concise and informative explanation.
I was started on 15mg/day split dose 5/5/5 of the uncoated tablets and this alleviated all symptoms within 24hrs.
After doing quite a lot of research I decided, off my own bat, to change at the 12.5mg/day level to single am. dosing.
I am now beginning to think that maybe the 3 times a day regimen might be best for me and that the 15mg/day dose was only around 50% higher than the dose that I need to maintain a relatively pain free existence.
This morning I have gone back to the 12.5mg single dose but may well try doing back to 3 times a day split dose.
If I'm honest the main reason I changed was probably for convenience as much as anything else. It's so much easier to get meds done and dusted as soon as you get up.
I really do find it extremely frustrating and annoying that there seems to be no definitive answers to all this and we are left very much to "fend for ourselves"
On another matter.
In the article you linked to I noticed once again reference to Fracture immediately preceding the onset of PMR.
This was one of the questions my Rheumy asked me at the outset. Do you have any idea what this is all about? Is it a known and accepted "trigger"?
I may be flogging a dead horse here but I would really like to know, or at least best guess, what triggered this in me.
I was diagnosed 3 years ago with Eosinophilic esophagitis, another autoimmune disease. This went into remission after around 8 months of swallowing very low dose steroid spray.
Approximately 9 months before diagnosis of PMR I had a fairly major operation on my neck ACDF C4/5/6.
This has left me with a sizeable chunk of titanium bolting my cervical spine together.
I am thinking that this, along with the predisposition for autoimmune conditions was the trigger.
If this is the case I am also wondering, once full fusion has taken place, is it worth having the titanium plate removed? Could this "foreign body" be a "catalyst" so to speak for the PMR?
Because this is a cross discipline matter it is very difficult to get definitive answer from anyone. The rheumy, the orthopod, and the neuro surgeon are all private practitioners and all work in different clinics so it is nigh impossible to get them talking to each other.
"I really do find it extremely frustrating and annoying that there seems to be no definitive answers to all this and we are left very much to "fend for ourselves""
There cannot BE any definitive answers as we are all very very different. There is no fixed dose that works for everyone - the nearest to that is that 15-20mg is enough for most people. Then you titrate the dose downwards to find the lowest that does the same job as that starting dose - it is done in quite a few other situations. Bioavailability varies, we are different sizes, have different demands or expectations, different diets and different activities of the disease - all contribute to a degree of uncertainty.
Pred in PMR is relatively easy compared to, say, anticoagulant therapies. My sintrom dose to maintain an INR of between 2 and 3 (measure of blood clotting) varies considerably. It had recently been stable over months and months - at least, the monthly readings were in the target range - and suddenly it has gone mad. Instead of once a month I've had blood tests every week or so. Still chaos. At least with pred I know if I don't feel right, no need for a blood test at the hospital/GP with the time that entails.
There other versions of PMR - PMR isn't the disease, it is the name given to the symptoms of some underlying disorder. Some may be post-viral, some may be triggered by a drug (statins amongst others), a cancer, other autoimmune disorders. You rule out all the other options, particularly where there are measurable criteria, and if all that is left, maybe it is PMR as we mean it, let's try a moderate dose of pred. At least if that manages the symptoms you can consider other things with a relatively pain-free, and therefore happier and functioning, patient. And about 1 in 6 eventually have the PMR diagnosis revised - and very often to another form of autoimmune arthritis, they just were wearing the same suit when they came out of the front door.
SOMETHING overloaded the immune system and made it go haywire - stress, environmental factors, infections, trauma (a stress) have all been suggested as factors that tip a genetically pre-disposed person to develop PMR. No one single thing has been identified as common to all patients studied - so it is probably the proverbial straw that breaks the camel's back with many of them having the potential to contribute.
I had a year with a steel plate and screws in my leg - I didn't feel properly better until it was removed. Some doctors will tell you that you cannot react to titanium - not true, evidence has now been collected I believe. It isn't uncommon for someone to develop PMR soon after a fracture - which particular aspect is it that forms the trigger though? The trauma itself, foreign bodies to glue you back together, the stress - which can be enough to cause a stomach ulcer, other medications?
To simplify splitting your dose why not try 2/3 morning and the rest late evening - before bed dosing of anything is easy, as is early morning. Or is it just early morning that is a pain? Many patients wake early, take their pred which they keep by their bed with a glass of milk or a yoghurt and settle down for another couple of hours by which time the pred is working and they can move better.
And to be honest - don't waste energy worrying about what caused it since that cannot be changed. It leaves far less energy to devote to managing it - which is now inevitable.
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HOW LITTLE OUR GP'S KNOW
Everything follows from the starting-dose?
Help please
PMR pain due to stress
Where do I go next after 2.5 years of PMR 
