After reading an research paper on PMR that linked weight to starting dose of Prednisolone my GP agreed I could begin on 12.5mg. It wasn't a miracle cure but a slow steady improvement over the first 2 weeks. Then I hit massive pain on my back, shoulders and arms. (Maybe from return to some movement and over doing it?) So I self-medicated and upped the dose to 15mg for 4 days until it settled. Then dropped back to 12.5mg. Stiffness all over rapidly returned and after a second painful night I returned to the 15mg for relief where I have now been on it for a few days.
Econsult told me I should stay on the 12.5 dose until I have my first review, 4 weeks away (6 weeks after first starting Pred). If I'd stuck to the original plan I'd now be tapering and on 10mg!
I feel I have left very alone to deal with this. Very little advice on what to expect or what 70% improvement realistically means.
On 15mg I have increased movement and less stiffness but finding it hard to put percetages on it. Or is this a pain measurement only?
Do I drop back to 12.5mg as the GP said to do and accept that I will have some stiffness and tenderness or stay longer on 15mg? And if so for how long? Would love any advice you can give me.
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Thank you so much for your advice. I will stay on 15mg for 7 days and see how it goes. Each day is so different. Very rocky. I suspect I'm not going to have a smooth run when it comes to starting the tapering. How I wish I had been given more advice on what to expect and recommondations before starting this journey.
I could not agree more , if i had been told/ warned or read up more on Pred i would have done things in a different way,what a mess it makes of your body !Even though it helped my pain at the time, i had no idea as to the aftermath it causes to your body ! I am 4years in and down to 7/5 from 20 .But to my own cost i tried to taper way to fast, its been like a roller coaster ! I agree with the ladies you can not be in such pain its awful. I hope one day to be Pred free , dont we all ! Good luck, keep on keeping on we will get there in the end . Best wishes Viv🌷
"If I'd stuck to the original plan I'd now be tapering and on 10mg!"
Ah - the crystal balls. That don't actually work!
The 2015 Recommendations say "the lowest effective dose in the range 12.5 to 25mg", If 12.5mg works well - all well and good BUT weight is only one of a range of factors, Disease activity has far more of a role to play and there are a few versions of PMR which are all a bit different.
The 70% refers to a "global improvement in symptoms as a whole" - not any one aspect. In my case, 6 hours after a single 15mg dose I was able to move relatively freely and could walk downstairs instead of stomping like a toddler and then walk back up carrying a mug of tea instead of placing the mug on the highest step I could reach and crawling up. The hip, hand and foot pain was still present and although they faded aome in a couple of weeks it was probably a couple of months before I realised they had just about gone. So there was a much better than 70% improvement in stiffness and large muscle pain, less in other things. But if you had asked me I would have said it was an immense improvement, I felt almost normal.
You can't start to taper successfully until both the symptoms and the blood markers are very much improved and preferably stable, You have to clear out the accumulated inflammation that is causing the symptoms so that you have a safety margin - you might feel OK in the early afternoon once today's dose of pred is taking effect but that doesn't mean the mornings are good or even tolerable until you are only dealing with todays batch of inflammation, not superimposed on the left overs.
Personally I think that paper by Cimmino has led to a LOT of problems in managing PMR. Before it was done the common starting dose was 30mg and patients cleared out the inflammation and then were often able to taper fairly steadily and with few problems, Then the (to me) throwaway comment that smaller lighter women did better than larger heavier men on a dose of 12.5mg was taken as meaning that was the only criterion. It is often said that the characteristic of PMR is a speedy response to a moderate starting dose of pred - but Cimmino says the response time to an acceptable level of symptoms with 12.5mg is a MONTH. For 3/4 of patients. But doctors continue to expect that whatever dose they start at, symptoms will be gone in a week or two.
If you are finding 15mg noticeably better than 12.5mg then you need to stay there for a month before trying to go back to 12,5mg. And the question will always remain - would it be even better at 20mg? Lower doses of pred look very enticing - but it is a bit pointless if it isn't able to control the inflammation well.
Thank you for your reply. With hindsight, and if I had not read that research paper, I would have started on 15mg as so far my journey has been much slower. I also wished I'd sought out help sooner because - form lack of information, or knowing what to expect, and having no bench mark to compare how I was coping - any initial improvement to my condition felt positive.
Thank you for detailing your initial experience. With so many people saying they had no pain almost immediately - not me - I couldn't tie it in with the expected 70% improvement. Or if this was before the daily dose of Pred, after or both. Strangely, since I started on Pred, I have felt the pain more accutely. Before my stiffness and therefore lack of movement cushioned me.
Wonderful thing hindsight, 20/20 vision!! And yes - you are probably right, Once you felt better you did stuff - happens a lot - and apparently relapsed because the margin for doing anything was so small. The other possibility is that when you started the disease activity wasn't as high as later - PMR very often progresses over time.
It will work out though - be patient and don't allow your doctor to reduce the dose too fast. Going slow now often helps the progress later.
Thank you. I have been wondering about the PMR activity. For many months after diagnosis I didn't take Pred because I was able to cope (and was trying to avoid steroids) but then rapidly went downhill throughout Feb. Maybe I'm still on that downhill path. Here's hoping it's small margins and over use of muscles from my improved flexibility - no more attempting garden pruning for a few weeks and back to jigsaws.
Back in Jan. 2022, I was started at 20 mg. Pred which worked miraculously. Almost overnight to relieve ALL the pain. Eventually I was able to slowly taper to 11 mg. had a flare and then upped to 14.0. As of Jan. 2023 was at 14.0 mg. Had a GCA scare at that time and put on 60 mg. Pred. Now in the process of tapering bi-weekly and I'm down to 40 mg. A faster taper at these high doses is okay, but once I reach 20 mg. will start the slow taper again. Also, I've begun taking the Pred at bedtime or about 45 mins before with some food. This works for me, as I sleep through the side effects of shakiness and sweating and wake up pain free. Overall, it gives me more flexibility and mobility throughout the day. I cannot say it would work everyone, but works for me. This is probably too much info, but all the best to you.
just had a thought… given Pred targets the source of inflammation (Y/N?) why don’t we PMR-ers clear the inflammation with an NSAID? Pred bungs the leaking tap, NSAID empties the bucket.
More so, it demonstrates my lack of understanding. Basically I’m confused since Actemera targets IL-6 and I thought Prednisolone does the same
I believe NSAID 's are given to those who are intolerant or can't take steroids. My GP did suggest them when I initially told her I was wary of taking steriods but they come with side effects too.
A GP I was registered with prior to surgery change (house move) said he was happy prescribing Naproxin along side Prednisolone as he said it may help. I’ve taken Omeprazole from day one of my 3 year 4 month journey.
No, pred doesn't specifically target IL-6, it has a much wider action.
"Prednisone decreases inflammation via suppression of the migration of polymorphonuclear leukocytes and reversing increased capillary permeability. It also suppresses the immune system by reducing the activity and the volume of the immune system. "
Actemra, OTOH, is highly specific for IL-6 which is why it only is 100% effective for about half of GCA patients since there are at least 2 other mechanisms creating inflammation in GCA in the other half. They need some pred.
Pred doesn't target the underlying cause of the inflammation but the process of that inflammation being implemented. Similarly, Actemra occupies the receptors that IL-6 must stick to to be able to create inflammation so it can't do so.
"Prednisone is first metabolized in the liver to its active form, prednisolone, a glucocorticoid agonist corticosteroid.9
The short term effects of corticosteroids are decreased vasodilation and permeability of capillaries, as well as decreased leukocyte migration to sites of inflammation.1 Corticosteroids binding to the glucocorticoid receptor mediates changes in gene expression that lead to multiple downstream effects over hours to days.1
Glucocorticoids inhibit neutrophil apoptosis and demargination; they inhibit phospholipase A2, which decreases the formation of arachidonic acid derivatives; they inhibit NF-Kappa B and other inflammatory transcription factors; they promote anti-inflammatory genes like interleukin-10.1
Lower doses of corticosteroids provide an anti-inflammatory effect, while higher doses are immunosuppressive.1 High doses of glucocorticoids for an extended period bind to the mineralocorticoid receptor, raising sodium levels and decreasing potassium levels"
Theoretically NSAIDs should work for PMR - in practice they don't have much effect if any and are specifically mentioned in the Recommendation as being inadvisable. They also have considerable systemic side effects, especially with long term use, and the propensity to cause gastric bleeding is high. Over time they also have a habit of becoming less effective and cause headaches themselves. If pred bunged the leaking tap, it would stop the production of the inflammatory cytokines - it has no effect on the production, Neither does Actemra - it greases the path so it can't get a grip ...
I tried 800 mg Ibuprofen + 1,000 mg Acetaminophen and it had zero affect on my PMR pain, or if there was an impact it was insignificant. This always had worked for me for non-PMR sources of pain when neither hydrocodone nor oxycodone did.
I can say 80 mg Pred knocked out all PMR pain, that had been building for over a week until had to go to ER, in less than 1 hour!
The bad part of being given 80 mg (decreased to 60 mg the next day) was it removed any potential fear of later overdosing from a mild increase to get on top of the disease. Especially since it took me awhile (months) to get to 30 mg /d.
Pred can have some nasty side-effects, but not everyone has them. Having GERD for over 15 yrs and taking Prilosec probably had an impact on me being able to take any dose of non-coated Pred given on an empty stomach with no issues. Those higher doses did give me a constant caffine-like buzz, but I still slept like a baby.
It’s why I don’t understand the timid approach to find the dose of Pred that will knock out the pain quickly. I remember reading a paper shortly after I came home from the hospital that suggested a starting dose of 15 mg/d and expect 5-7 days for pain to abate. Yeah, right, a patient is experiencing a 10/10 pain, give them 15 mg and tell them they’re going to have to deal with the pain for a week to get relief! This, when could give 30-40 mg and have the pain dissipate quickly and then drop it maybe 5 mg and give it some time (week or 2🤷🏼♂️) to see if it builds again.
Instead, they promote tapering as fast as possible. Just about every post I’ve read on this forum from patients is 100% focused on being able to taper! That is the main compliant. The focus is all wrong. The focus should be on the disease, what is it doing? I can’t see the inflammation but I can darn well feel the effect. The game we’re trying to play is pin the tail on the donkey. The goal is to find out how much Pred do I need to counter the effects of the disease. If I take too little, in time the pain comes back. How much time? Depends on how far the patient has gone below whats needed AND the current intensity of the disease. Take big steps, greater chance of going quite a way below and experiencing a worse flare in less time after decrease. Smaller step decrease, less magnitude if go below, longer time for pain to show up and the faster can compensate with an increase.
Imagine we have a barrel that has a spigot at the bottom. Above, water is coming out of the ground and flowing into the barrel. There’s a hidden reservoir, we don’t know how much water it contains initially but it must be quite a bit because it’s a good flow, so we open the spigot to drain the water out at a rate where the barrel doesn’t overflow (or we could mark a line a few inches from the bottom of the barrel. This line represents the pain threshold. The further the water rises above this line the more pain you’re going to experience.
The reservoir represents the disease. Does the doctor know it’s volume? Nope!
The flow rate & flow volume represents the intensity of the disease. Do we know that? Not directly, over time indirectly we can guess.
The water level in the barrel is the inflammation in your muscles. Do we know what it is? Again indirectly we can look at ESR & CRP in the blood, but directly we have the pain. The greater the pain the greater the inflammation. BTW inflammation damages muscle. Which is worse having muscle damage or possible Pred side-effects?🤷🏼♂️
Now. The spigot represents taking Pred. The greater you open the valve is equivalent to a higher dose of Pred.
So initially, not taking Pred, the Spigot is off. Something causes the reservoir to suddenly start filling with water. The water starts rising in the barrel (inflammation) and as it starts to rise the ESR & CRP starts to rise, but you don’t feel it yet. It continues to rise until finally the pain is too much. Go to the Doctor and they give you Pred (open the spigot). Now if they give you a huge dose like they did me, it was like throwing that valve wide open and the output of water was far greater than what was flowing in. Shortly the barrel was empty and the water was going out as fast as it was coming in. Pain’s gone, but what do we know about the disease? Nothing.
Normally, they’re trying to give you a dose that initially opens the valve such that the outward flow is greater than the inward flow. But it’s a guess. Eventually the water level (inflammation) is below your pain threshold, so close the valve some (step decrease). If after closing the valve some and waiting awhile (to give the water sufficient time to rise inside the barrel, if closed the valve too much) pain starts coming back then need to open the valve some to drain some of that water out before readjusting the spigot.
If we were doing this in a lab, with an unseen reservoir. We could have gradations on the “glass” barrel and a precision valve with micrometer adjustments and we could watch the water level and make precise adjustments to the valve and know exactly where to adjust that valve for a given flow into the glass barrel. We could even setup a flow measuring device upstream of the barrel and adjust the valve directly.
But we don’t know the amount of the disease, we don’t know its activity level (flow), we don’t know the amount of inflammation (maybe if we could see continuous realtime ESR & CRP values possibly), and so we don’t “know” how much Pred to give.
IF everyone would imagine the above scenario it would help in understanding what’s going on an they would approach managing the disease in a different way? Don’t be so quick to clamp down on that valve!
This is really for anyone just getting this disease or having a hard time understanding the situation. Not specifically for you; Oh-my.
Sorry for the long post, but going by what I’ve been reading I think it was needed.
There are various reasons for NOT starting a patient with "just" PMR symptoms on such a high dose. One is that over the last 60 years enough experience has been gained to know that PMR typically responds well to a moderate dose of pred - and that has been a cardinal part of the diagnostic process. PMR typically responds quite dramatically to doses of 20mg or so, obviously there are exceptions and it is also becoming obvious that PMR comes in various guises and they vary in response to pred. However - if you start with a very high dose, then you lose that filter, many things will respond to 80mg pred!
20 years ago it was common to start with 30mg pred - and personally I think that is not a bad idea. I didn't need it - I got a miraculous response to 15mg pred in 6 hours but it hasn't made my journey any easier. Some rheumies still do but many are scared of pred. Unfortunately they will need another round of low dose starts to realise there is a happier medium!
I know that, it’s why I stated that while 80 mg killed the pain immediately it also wiped out any knowledge of the PMR condition. 30 mg would have been a lot better. I’m a bit surprised that you completely missed my point. My point was to try to get persons with this disease to look at it from a different perspective and not just about how fast can I taper.😒
I guess I interpreted it incorrectly because it started out addressing the 80 mg / day dose. That dose was completely uncalled for especially considering I had zero symptoms of GCA where a dose of that, or higher, magnitude may have been warranted. At most they should have started me at 30 mg and only then because of the magnitude of the inflammation. If I had gone in 3-4 days earlier something around 20 would probably been enough. Another thing negative about such a high dose for just PMR is from what I’ve read, and attest to, that it’s more difficult tapering. I actually had a PMR flare going from 50 mg to 40!
The only arguable “good(?)” thing that came from it other than pain gone almost immediately, is I wasn’t ever fretting about going to a higher dose as it might kill me.😂 I mean I came down from a massive dose, think I’m going to fret about going from 17.5 mg to 22.5 mg after having a flare, and feel the need to call the Rheumy as ask permission first? LOL.
When I took the Acetaminophen / Ibuprofen I was keeping close track on time between dose and daily accumulative, which back then it was 4,000 mg / 3,200 mg respectively. Now, they have it as 3,000 mg / 2,400 mg.
The reservoir and valve analogy is very clear. Thank you. But what I don't understand is how then do people manage to get past the equilibrium point? Some at a steady pace and even those who take it dead slow get past it and lower. Is it a case of waiting for PMR to slowly burn itself out and timing the tapering accordingly? And yet some seem to manage it much faster.
Because PMR isn't the same in everybody and there is accumulating evidence that there are different versions. What you are always aiming for is to identify the lowest effective dose at any particular time. In most patients that will fall over time but some have relapses and increases in disease activity with flares that are not related to the dose reduction and have to go higher again. The equilibrium point varies - and that is the whole point of the tapering, which is also referred to as a titration of the dosem a term I often refer to.
Anyone where the disease activity is falling is able to taper the dose. If their initial disease activity is low compared with the dose they are started at they will respond well to the 15-20 dose range and have no problems tapering if they go about it sensibly, not with massive steps like some doctors want. Then there is the risk of steroid withdrawal and many doctors just don't "get" that, panic and send the dose back up, slowing the reduction process and confusing the patient and their body. It's part of why we developed the slow tapers - they minimise the steroid withdrawal process and identify a personalised dose.
To some degree, sheer luck. We don’t know how fast the PMR is going to reduce it’s effect, for some maybe never? I think (don’t run with this without confirmation) that it was thought 30% of patients PMR resolved within 2 years, some even in 1.5 years. Since it’s still not known the cause and it appears PMR is diagnosed from a process of elimination who’s to say those relatively short terms were even PMR?
I think now it’s believed by some the average, including Adrenal recovery is between 5-6 years, and there are exceptions to that with longer terms.
What worked for me is going with smaller steps using not more than 10% reduction until I got to 2 mg/d as I can’t cut a 1 mg tablet in smaller than quarters and the variability of those portions were probably 0.20 - 0.30 mg doses. Also, I think DL’s Simple Taper helped me to picture, in my mind, what the disease was doing.
It was interesting that if I was going to start to flare at a specific new dose, it was on Thursday (day 5) of week 3 of the taper schedule. Pretty much without fail about 5 hours (2 pm) after I took the dose (9 am). I immediately that afternoon, upon feeling the discomfort coming, took the difference between the old-dose minus the new-dose, meaning, that day worked out as being back to the old dose. I stayed there for at least 1 week, sometimes 2 weeks. Depended on how I felt. That’s hard to describe as first I never reduced if I was feeling what I knew was pain from PMR, but sometimes even with no pain I had an intuition not to decrease and didn’t.
With the smaller steps, DL schedule, immediate response if I started a flare I didn’t have a lot of inflammation built up and within a day, 2 max, the symptom went away and discomfort was mild.
If we’re talking 1 mg steps on 10-6 mg doses after the week pause (or 2) I’d either try 1 mg decrease again, and if the same result, after going back to old dose again for the week or two, the next attempt would be half-step or 0.5 mg. I’d also note how many weeks I had been at the old dose before successful taper, give me kind of an idea of what the disease was doing. If it took me 3 + 1 + 3 + 1 + 5 weeks before being successful with a 0.5 mg decrease, that’s 13 weeks for a 0.5 mg successful reduction. So…maybe I’ll repeat week 5 of DL’s simple taper 4 - 5 times (ie., hold the current dose for 5 weeks) before trying another step, whether it be 1 mg or 0.5 mg. One thing need to remember. If your steps are small, the potential amount you’ve gone too far is much less. Meaning can quickly overcome the minute addition of inflammation. One can argue that doing the 0.5 mg for 6-3 mg/d or 0.25 mg for <3 mg is overkill and takes longer to get to zero; I’d argue that can easily react to the disease (just by multiple attempts of the same or half-step - smallest step is 0.25 mg) by a temporary hold as opposed to really overshooting, then hesitating to respond to the first sign of pain just allowing the inflammation to build to where you have no clue where you are relative to disease.
Also, taking the 1.25, 1, 0.5, 0.25 mg step decrease via 10% reduction, approach you reduce the chance of adrenal insufficiency (AD) and if you do have any symptoms, they’ll probably be extremely mild.
My disease lasted 2.5 years. I don’t know how much of an impact the doctors starting me on a ridiculously high dose may have extended that, if any.
Remember, you’re following whatever course the disease decides to take, that you have no control over. If a flare comes that’s really extreme based on prior, then hit it hard with maybe a x+5 mg dose for a couple of days then try to return to where you were. In those cases you can only give it your best guess.
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