I was tapering down from 10mg then 2 weeks went to 9 mg and then 3 weeks to 8 mg. When I got to 8 my shoulder pain and hip pain started to come back! Called the Rheumy he said go back up 1 mg and stay for a month, then try again to taper 1 mg a month from there. My shoulder and neck pain come back each day in the morning but get better for the rest of the day after taking prednisone and I have no pain when I sleep. Is this normal and will the pain ever go away?? or do I need to go up more in the mg? Is pain part of the process and should I deal with it knowing that one day it will subside?? How do you know when is enough prednisone?? To say the least this yo-yo life is very difficult to deal with emotionally.
Tapering (ugh): I was tapering down from 10mg then... - PMRGCAuk
Tapering (ugh)
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flygirl65
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Personally under 10mg I would taper 0.5mg a month. Some people are tough enough for 1mg. I think you got from 10mg to 8mg too quickly and the PMR decided to hit back.
PMRproAmbassador
When you started with pred you should have achieved a good level of pain relief - at least 70% improvement fairly quickly. You had a rather strange approach at the start but when you were on 20mg that level of symptom relief was your guide for the future. You should never feel worse at the end of a taper step than you did at the start in terms of PMR pain - you MAY find that osteoarthritis reappears at some stage.
You are never tapering relentlessly to zero - though it sounds as if your doctor doesn't quite get that. You are looking for the lowest effective dose - the lowest dose that works as well as 20mg did. Once you get to 10mg you need to slow down - 2 weeks really is not long enough to be sure and at least he has said a month at a time now.
However - I doubt going back 1mg for a month will work well - I would add 5mg for up to a week and then go back to 9mg for the rest of the month,
The reason the pain returns in the morning is that is when the inflammatory substances are released. If the anti-inflammatory effect of pred doesn't last the full 24 hours for you, you will have some pain until the new dose kicks in. It is possible to ease that by splitting the dose, 2/3-ish in the morning, the rest late enough in the day to carry you over to next morning, sometimes lunchtime is late enough. But if you have been pain-free for 24 hours before, it suggests you are very close to your dose now. However slowly you go about it, you won't get past that dose - so don't try to force it thinking the pain will go away - PMR always wins that battle. You WILL get lower - just not yet. The smaller the step down, the less uncomfortable it will be, pain that starts immediately is likely to be steroid withdrawal, pain that builds up and appear later is more likely a flare.
You shouldn't be yoyoing - if you get pain at a similar dose more than once it is a sign to take a pause from tapering at a dose where you have minimal symptoms.
Thank you I will try that (adding 4mg for a week) then back to 9. Would that mean starting the month over at 9? Always appreciate the advice!
Not necessarily - but I suspect you won't get away with less than 9mg yet. First make sure you can get things under control.
Do you think we should tell her about the 2am dose?
Maybe -but I think in this case it’s either too low a dose (so more required) or as PMRpro says not lasting 24 hours (where splitting dose as suggested helps).
The 2am scenario helps with early morning pain -which isn’t necessarily the same thing.
You may be correct in your thinking -sometimes it’s difficult to find the exact cause -which is what makes it so frustrating 🤔
Thank you for your kindness. It means a lot during these difficult times. Mysteries are not easy and solutions even more obscure. Having people to bounce things off is certainly a help! Merry Christmas 🎄
First make sure then we get to waking at odd times!!!
in reply to PMRpro
I'm quite new to this PMR beast. I started prednisone 4 weeks ago at 20 mg for 3 days, 15 mg for 3 days, then 10 mg - which I'm currently at. I never have relief from pain and operate at about 30%. I had a few good days early on, and have limited, unpredictable times of "some " relief. From what I'm reading, I'm wondering if I did not achieve the intended purpose of the higher, initial dosing. I'm not sure what to do. I don't see the rheumatologist until May. He planned a 1mg reduction each month after I see him. I do feel like I'm yoyoing. And, the areas of pain seem to take turns as to which will hurt the most. I have, leg, hip, shoulder, upper arm, neck pain. I so appreciate all the insight - though this all is pretty depressing...
Nextoneplease in reply to
Hi stcecilia 😊
I’m sorry things are depressing for you and I have to say that I feel your dosing and tapering has been mishandled (as you suspect). Your initial dose of 20mg should have given you at least 70% relief from pain. As it did not do so, the dose should either have been increased to 25mg, or at least maintained at 20mg for much longer. Not everyone has rapid relief from pain with prednisolone - it too 3-4 weeks to work adequately for me.
And then….I’m sorry to say this, but I feel your rheumatologist has advised you to taper the dose much too quickly. In fact, you should never reduce until you have established stable relief from pain. And I can’t understand why or how he would plan the 1mg reductions before he even knows how the current situation is going.
Can you contact him to inform him you are still in a lot of pain? You shouldn’t have to be, honestly. Personally I’d want to go back up to 20mg, stay there for a month, and only reduce when you are at least 70% pain free. (And if the 20mg doesn’t do it, 25mg is perfectly feasible).
I hope you can have a useful conversation with your rheumatologist along these lines.
Good luck and do let us know how you get on 😊xx
in reply to Nextoneplease
Thank you so much for your feedback. I did have relief at 20mg, but I believe I should have stayed on it longer. I just didn't know what to expect. Also, my brother treated with prednisone some years back and was on a higher dose too long and had some significant subsequent events (hip replacement, snapped tendons.) Full disclosure, I started this prednisone regimen in the midst of having out of town company, and a couple of weeks of symphony chorus rehearsals and performances - the last one being yesterday. I now realize that over activity aggravates this beast. I intend to reset my activity expectations more in line with this new reality. Also, have a call to my rheumo on the to-do list. Thanks again for writing.
in reply to Nextoneplease
I called the rheumo office, armed with this good info. He agreed to 15mg, which I have been on for the past 3 days. I told him I didn't want to taper more than 1mg at a time down to 10mg. I feel much better at 15 mg, but still have some pain and stiffness. (1st day at 15 was good, day 2 and 3 a bit less so.) My question is, should I be pain-free at 15mg, or does it mean I need to increase pred even more? Does it take a while at a certain dose, to achieve pain-free state?
Being a very active person before PMR, I have greatly reduced my usual activities and clearly over-did thing my first weeks in this journey. I am now a "lady of leisure" until I figure out just what I can, and cannot do within the parameters of my pred dosage.
It was a couple of months before some of my pain went altogether but what they look for is 70% global improvement in a week or so. See how you are after a week,
in reply to PMRpro
Thanks so much.
in reply to PMRpro
So, I'm 5 days in on taking 15mg pred (from 10mg). I added 5mg at 2am. I have been taking the 10mg in the late evening. It seemed to be working better for me as the pred takes its time giving me relief, i.e., 3-4 hours. But, I'm having some sleep difficulties now so wondering if I should go back to morning. I still have (managable, but irritating) pain, especially in my shoulders/upper arms. The leg strength/pain has been better earlier on, so I'm a bit bummed that jumping to 15mg hasn't given me more relief - especially in my arms. I also start feeling the pred wearing off at about 20 hours, so I've been going to bed in discomfort (aggravated by the fact that I can't fall asleep as easily now.) Curious to know whether you believe I should up the pred, give this 15mg course more time, take the entire dose at one time vs. splitting, change dose time... I do have a scrip of 1mg pred (in addition to 5mg) so I could tinker with smaller dosing increase/decrease. I don't see the rheumo for a month so I have time to tinker with this before I see him :). It seems like timing of the dose seems to be a factor, too - or is that less of a factor when trying to determine where I should with dosage?
One of the problems with letting in a flare like this that it can be harder to get it under control after - takes longer or more pred.
I do think it is best to start with a single dose until you are really familiar with your PMR and how it and you respond to pred.
And PS - take it all at 2am if you want a single time if that doesn't disturb your sleep too much, But you may have a few days of some pain returning until it is under control again. I suspect you need 20mg to start having read your replies to DL.
in reply to PMRpro
I just replied to DL about last night, and I'm thinking you are right about the 20mg. I'm just so bummed that I didn't get much out of the 15mg bump. Is that typical if someone is not where they should be in terms of successful pred level?
It is typical to find it is harder to get things under control if you flare after being on pred for a while - steroid-naive patients tend to respond quicker.
in reply to PMRpro
Not sure what you mean by steriod-naive patients. (I want to become one again 
) So, what would be your recommendation be at this point? I feel like I'm getting educated on and realistic about this condition, but also feel like I'm over-thinking it all, with little progress to show. I just want to get level-set in terms of pain. Hoping to achieve this for my own sake , but also before I see the rheumo on 5/5 so I can ensure his support for a slow taper once I stabilize. Thanks so much for your (and DL's input)
Patients who have never been given pred before. I think you are over-thinking - I know it is hard not to though. Under the circumstances I think you need to start over, and be patient. Don't think in terms of how quickly will I get my pred dose down, think how can I best get my symptoms under control, Some people take a month or more and are still not entirely pain-free. It is just so. We are humans not machines.
in reply to PMRpro
I totally appreciate your perspective PMRpro. I am committed to the SLOW taper and am convinced of that strategy. I'm just perplexed at not achieving a more tolerable pain level. I do remember the initial 1st day or 2 of 20mg of waking up like new. But, then I did too too much (was not informed about those consequences) and tapered way too severely. I've had some good days since but have not achieved a consistency. I'm where I was a month ago. Perhaps more time at15mg before going to 20mg?
It takes time - and after being allowed to flare like that, it may take MORE time or, possibly, more pred. But no-one can tell you how long or how much. If you don't learn anything else with PMR it will be patience!
in reply to PMRpro
I fear you are spot on about the patience. It's not been my strong suit. This condition has rocked my world and perhaps the Universe is helping me to learn that virtue. 😊
Most people who tend to develop PMR are the non-patient types!!! And their world is often turned upside down,
Nextoneplease in reply to
Hi stcecilia 😊
Glad you were able to have a useful conversation with your rheumy. Very pleased to hear that he seems to have taken your views on board 👍 In answer to your question, many people, myself included, are not immediately pain free on 15mg. It took me several weeks - a bit too long, looking back! So, give it a week or two and if you are not at least 70% improved, ask about a higher dose. But do give it that week or two first…..
Meanwhile, enjoy being a lady of leisure if you can - not my style either but I’m getting used to it!
All the best to you xx
Think you need to be at 15mg for longer - because it sounds as if you haven’t managed to get control [not your fault - strange start by over-optimistic Rheumy]. And what percentage would you gauge is your improvement pre diagnosis? As PMRpro quotes-- at 70% is criteria - but many get better than that….and personally I think you need a single dose at the beginning.
in reply to DorsetLady
I do believe I am 70% better than pre diagnosis. I meant to add that to my update. What do mean about a single dose at the beginning?
Taking your daily dose as a single dose, rather than splitting it …..
in reply to DorsetLady
very good. thanks. How do you go about changing you dosing time? Just gradually? I'm thinking the higher dose may be messing with my ability to fall asleep...
Do you want to continue taking at 2am? If so, couple of options …
either reduce the 10pm one down to 5mg, and then 10mg at 2am…for a few nights..and see how that goes -
or you could bite the bullet and just miss the 10pm - and go straight for the whole dose at 2am…
Depends how brave you are! The second option might give you one night of discomfort between 10pm and 2am but then it should even out.
in reply to DorsetLady
So, I went for your option 2 and took the 15mg at 2am. I even managed to sleep a bit before 2am but was pretty sore at 2am. I was hoping for some relief in order to go back to sleep, but relief never came. As the night went on, I added in some anxiety about all this, which likely made things worse. I was SO hoping to realize some improvement this morning and I just still hurt - especially my arms After 6 days at 15mg, I honestly don't feel much different than at 10. PMRPro suspects I need to be at 20mg. Should I try that at my next dose, or give this one-time-a-day 15 mg more time?
Maybe try one more day - and then if you feel it’s not enough -try 20mg
in reply to DorsetLady
I stayed with 15mg, taking at 1:30/2a for 9 days. I did feel slight improvement but still experiencing too many symptoms. I upped to 20mg last night. I did feel improvement this morning. The upper arm pain is not as acute, but I can't invoke much muscle use. Should this improve if 20mg is doing the job? I also need to get back into rheumo office (only talked via the nurse last time) before my scheduled 5/5 appt as I will run out of tablets!
Would hope the 20mg would improve things significantly. But you probably do need to speak to Rheumy Dept to advise what’s happening.
in reply to DorsetLady
You saying that the 20mg improvement should have been significant after 1 dose? I do feel better, but am not symptom free.
No, not after just one dose -sorry didn’t express that very well . Meant hopefully a week or so on it will give significant improvement.
in reply to DorsetLady
Ahhh, thanks. That's what I was thinking as well. We shall see!
in reply to DorsetLady
I have been at 20mg for the last 7 days, taking it at 2am. Where there has been some improvement, I'm still pretty sore first thing in the morning, improve somewhat during the day, and feel the soreness again by bedtime. What is puzzling is my deltoid pain. Whilst in both arms, my right arm is worse (I'm rt handed.) This area of pain was not as acute early on and really affects such simple tasks, e.g., combing hair, getting items to and from cabinet, etc. I took 25mg pred last night, but wondering if I'm just not being patient enough at the 20mg. (The deltoid pain is actually a bit more muted this morning.) My question comes down to: how do you know you are at the right starting pointing with dosage before you can think about planning a taper? I got off to a bad start and feel like I'm chasing the right dosage. I also exacerbated my initial flare with 3 weeks of pretty intense activity following diagnosis. I'm seeing the rheumo tomorrow to fill him in on what I have been doing. The office/nurse had approved 15mg two weeks ago and assumed I would begin a taper once stable. I recall reading that PMR dosage is typically between 15-25 mg initially. If that doesn't handle the symptoms, it may not be PMR...? My symptoms are pretty true to PMR, but achieving the right pred dose is alluding me - or I'm being unrealistic.
Have you done anything in particular to exacerbate the deltoid pain ? You do say you had been quite active after you started steroids -what specifically? . That could be why it’s worse now than it was pre diagnosis.
Think you needed to give the 20mg a bit longer -and the fact that an extra 5mg has made a difference still indicates it is PMR… and yes probably more patience required.
in reply to DorsetLady
Thanks DL. Regarding my activity, I have GREATLY reduced my activity since 3 weeks ago, when I was in the height of symphony chorus rehearsals and performances - which required holding music out in front of me. So perhaps the reason for delayed arm pain. I would say I'm at 10-15% of my typical lifestyle now so am also trying to navigate appropriate activity in order to maintain some modicum of muscle tone, etc.
Your activities a few weeks ago have probably just caught up with you..hopefully now you’ve eased off, things should settle. But think you still need to stick with the 20mg for longer to make sure.
Much too fast a reduction… you need to be in initial dose for at least 3 weeks, not 3 days… and then smaller reductions, 2.5mg a time [if manageable, but not always] to 10mg.
Have a look at this intro post- and you need to tell your Rheumy his plan isn’t working [not easy I know, but if you don’t it’s a complete waste of time] -
healthunlocked.com/pmrgcauk...
More info - usual guidelines for reducing -
PMR guidelines - tapering
This is tapering regime from guidelines -
The suggested regimen is:. Daily prednisolone 15 mg for 3 weeks.
Then 12.5mg for 3 weeks.
Then 10mg for 4–6 weeks.
Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
note the comments - these are just guidelines, not everybody is able to conform., the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course. Some benefit from a more gradual steroid taper.
" I never have relief from pain and operate at about 30%. I had a few good days early on"
That is hardly surprising. The starting dose of 20mg should be stuck to for 3 WEEKS not 3 days! PMR is a chronic disorder and treatment lasts for years - not a few months and your doctor obviously doesn't understand it. This is something we are seeing more and more, especially in the USA. Their terror of pred outweighs their desire to manage patients properly.
This paper gives a good approach which works:
rcpe.ac.uk/sites/default/fi...
PMR can be a symptom of its big sister GCA - if you develop that you need a much higher dose of pred to reduce the risk of losing your sight. You need to find a doctor who knows how to manage PMR properly as it is thought inadequately treated PMR may be more likely to progress to GCA, As it is, you are on a dose of pred that is causing unwanted effects without any benefits of the PMR inflammation being properly managed. Long term inflammation of that sort also has effects, increasing the long term likelihood of a lot of things including cancers.
If the dose of pred is too low to manage the inflammation then over time the inflammation will just build up and the symptoms will get worse. People have been reliant on wheelchairs or unable to get out of bed and manage daily tasks without assistance, Which is ridiculous for a disorder that can be well managed with a moderate dose of pred. You don't stay at 20mg for long, you taper to find the lowest effective dose but you don't set about it the way you have been told to.
Hello, I think you’ll get mostly the same answers as last time to be honest. It may be worth reading all of them again and think about what it was that made you want to carry on with the same very fast regime that is not giving you great quality of life. Based on the majority of experiences here your reduction plan has likely caused you to overshoot the minimum dose that you need for the inflammation you are making. Reductions of 0.5mg make this much easier to find. What happens when you overshoot and pain creeps back is having to go back up to quite possibly a higher dose than you really need. Pain = inflammation so it isn’t part of the process; you need to keep that under control if you want to avoid this misery and risk of GCA which would make this dosing level a walk in the park. This condition hangs about for 2 years plus so finding your correct level slowly and with care and making peace with a process you didn’t ask for makes a huge difference.
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