Been on 20mg prednisolone since 1/1. The pains have just about gone, which is amazing, however, I’m still getting some shoulder and glutes pain.
My GP is completely supportive of me managing my medications, which is great, but means if he gives me info/titration rates it is ‘by the book’.
My question at this stage is; do I stay on 20mg for a bit longer to see if the inflammation reduces further, or should I increase it a bit to bash it once and for all? (I have 1mg tablets)
Thanks in anticipation
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Liskeard
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It is early days Liskeard, I take it you mean 1/1/19? I think that you might hope for better relief than that at the start. You could try an extra mg, bearing in mind that some people never get 100% relief. A start dose for PMR can be 25 mgs in some cases. There are differences in absorption rates between individuals. I notice that you have been suffering untreated symptoms since Sept 2018 and you also posted saying that you had not experienced total relief in 16 days. Bearing this in mind, I would be inclined to give my start dose, perhaps increased a bit, a good 6 weeks to work. Good luck ( just creep up 1 mg at a time, to see if you can reach your optimum dose). Keep up with the good diet and exercise regime too. Keep in touch.
Hi there. I have exactly the same question... I am 4 days behind you and on 20mg. Bicep pain but that’s about it with occasional left glut pain if sitting too long. I look forward to responses from all the wonderful and supportive experts.
Welcome to this excellent forum, which will help you no end to manage your condition.
I was started four years ago on 20mg and, within a week, my GPmoved me to 30mg to knock the inflammation and pain on the head. From what I've subsequently read on here, that was probably a bit over the top by my GP, but I knew no better, but I was then able to taper down ok - first to 25mg, then to 20mg (6weeks after I first started), then very gradually after that at about 10% of the dose. It's taken me all this time to get down to 3mg, so be prepared for the long haul! Sorry about that.
I am not qualified to tell you what you should be doing re your current dose. PMR is very much not the same for everyone, so perhaps it would be best to check with your GP.
I'm sure others will be along to give advice in due course. All I would say in the meantime is don't try to rush tapering down, whatever anyone else may say. PMR will decide its own course, regardless of what any of the professionals think. Also give yourself plenty of rest and tlc - you'll need it.
Hello Liskeard, I was diagnosed in Feb. 2018. Began on 15mg Pred. After three weeks still had pain in left upper arm plus lack of strength in pushing weights with same arm. GP said increase to 25mg which I thought was a big jump but obeyed and it worked. Have had smooth tapering to 10 mg, but presently seesawing between 9 and 10 mg. Ok on 10 but 9 a problem. Would love to get below 7 but will persevere very slowly as advised by the wise and knowledgeable people here. My GP is also happy for me to manage my own ups and downs. Take care.
If it’s any help Meggsy I was fine on 10 but as soon as I went down to 9 my ‘normal’ aches and pains (related to getting old!) began again. I’ve kept reducing very slowly using DSNS and am down to 3 but with bursitis in my hip which is painful. Am seesawing between 3 and 2.5 and waiting to see what happens. Still have normal aches and pains but am prepared to put up with them to save my body from the ravages of Pred. All the best.
Thanks lovely lady - I take your point and I guessed that someone would pick me up on my use of language ☺️ I guess I should have put it differently. My point was that for me dropping down from 10 to 9 was the point at which I began feeling my normal aches and pains. Having been completely pain free at doses above 10 it was a painful (both physically and mentally) return to reality. I am, I know extremely lucky to have had that pain free time since I realise from this site that many people are not so lucky.
As I understand it the trochantic bursitis is separate from though often is associated with PMR, and I’m trying to work out whether or not dropping very slowly from 3 to 2.5 is working out for me. So far it doesn’t appear to make too much difference. Perhaps I should post a separate query to find out what other people’s experience is.
I should also add thanks for the link you posted...I had already read it as I picked it up from other posts of yours to other people, but it was useful to reread it!
Thanks for that, I’ll give it some thought tomorrow! Too tired tonight. I may be down to 3mg but the fatigue still kicks in. Hope you’re doing well after your op. Been thinking about you and trying to follow your progress!
Must admit usual gels and painkillers don’t seem to help that much, just keep it at a low level ache.
Had left knee replaced last July and now right hip this month! Hip coming along nicely; knee pain free!
Right knee and left hip apparently are mildly affected - let’s hope they stay that way!
Left shoulder is quite bad and has been for very long time, but it’s not affected life the same as legs - and don’t really want that operated on - it’s manageable at the moment with occasional cortisol injections.
Sounds as if we need to call you the bionic woman! Still at least you’re nicely balanced, left knee right hip...! Let’s hope that the rest of your joints remain reasonably stable...!
It is separate from PMR in that you can have one without the other but when you have PMR and trochaneteric bursitis it is often a case that the autoimmune part of the PMR feeds the inflammation of the bursa.
Other causes include:
Hip injury or trauma. ...
Repetitive pressure on the hip. ...
Age and gender. ...
Rheumatoid arthritis and gout. ...
Problems that affect biomechanics. ...
Previous hip surgery. ...
Bacterial infection of a bursa. ...
History of inflammation of the bursa.
In the mechanical cases physio may help - but in PMR or the other disease-related causes something more is usually required.
It was a very definite part of my PMR before I started pred and it returns if I have a flare and don't increase the dose. I usually get steroid injections if it gets too bad - and once it is settled again I will go a couple of years at least before it is bad enough to need another.
Thank you so much for that...I was thinking about posting a question, but I think you have pre-empted that with your reply. I'm seeing a physiotherapist who is also a rheumatologist tomorrow, and am hoping for some help from him. The bursitis is sort of easing off but after 100/200 yards or so of a walk begins to get very painful. Some days are worse than others - damp is bad, though cold not so much so. I'm going on holiday in May (booked before the bursitis appeared) in which there will be several days of 4/5 hour walks, and unless I get some help, that is going to be impossible for me. Thanks again.
Yes IG, I was planning on using DSNS when I got under 9mg but will now start from 10. I certainly can’t complain when I read of the multiple problems of others. 🙂
I've found that DSNS works really well for me. It takes a long time but its such a gentle drop that speaking personally, so far my body seems to take it fine. Anyway I wish you the best of luck.
You might want to try dropping by .5mg, down to 9.5mg. That’s what I did when I encountered the same challenge as you. Stayed at 9.5 for a month and now tapering to 9mg.
Thank you PMRCanada, I did go slowly. I alternated 10 and 9.5 for 3 weeks, then 9.5 for 3 weeks, then 9.5/9 for 3 weeks but no success with 9. I probably could have gone back to 9.5 but decided on 10. Oh well, if at first you don’t succeed.... 🙂
I think it is pretty standard to stay at the beginning dose for four to six weeks, provided it has done its work in controlling the symptoms. After that a slow taper plan can be started, never more than 10% of the dose. Early on the taper can be done relatively quickly, depending how you react to the drops in dosage, but as you get lower you'll need to slow down considerably. You'll get lots of advice from here how to handle the taper so I won't go into details, but I think you should stay at your starting dose for at least a month.
Some residual pain may not be PMR itself but one of the add ons we often seem to get and should ideally be treated other than by increased pred dose so it would be wise to determine whether it's PMR or one of the other things, like sciatica or bursitis, etc. The experts will be along and can give you better advice.
Personal opinion only - best to stay on initial dose for 28days to ensure Pred has a chance to mop up all that accumulation of inflammation. I know you are 3/4qtrs of the way there, but another week might just be enough. On the other hand, as Jane says it might not be enough for YOU for a variety of reasons -
you just need more,
you are not getting the full benefit of the dose,
you are feeling better, so you are doing more (too much).
I would try another week, but if things get worse then you do need to increase, maybe by 2mg initially.
Increasing the dose won't "bash it once and for all" - PMR doesn't work like that. It is a chronic autoimmune disorder that results in the production of a new batch of inflammatory substances every morning and so a new dollop of inflammation developing. The pred mops that up - it has no effect on the actual disease process at all, that chugs away in the background causing fatigue and bleugh-ness but the pred helps manage the other symptoms to allow a better QOL until the actual disease burns out and goes into remission - which it does for 95% of patients sooner or later.
How quickly the pain disappears depends a bit on the level of the dose, yes, but being patient at 20mg is probably a good idea since it has worked pretty well so far - if you go higher, that just means further to come down again and that is a lot harder than going up!
I started on 15mg and got massive relief of the stiffness within hours, at least the 70% improvement doctors go on about in PMR. But it was a few months until the hip joint pain due to bursitis and the hand and foot pain due to tenosynovitis faded entirely. That is because the blood supply to those structures is not as good as to muscle so it takes longer. Increasing the oral dose won't make that much difference there but will probably increase the adverse effects you feel.
And since no-one else has mentioned it: being on pred does not mean you are able to return to "normal" activities. You have a new normal now and for most people it is rarely more than maybe 60% of what it was before and in the early stages even less. It WILL get better - but first you have to have a period of R&R to let your body heal itself. Some bits of PMR require rest and pacing:
and your muscles remain intolerant of acute exercise - just as if you had flu because that is the sort of effect autoimmune disorders have on the body. You will be able to do more - but you have to train for it by starting VERY small and building up VERY slowly. That means maybe a 5 min walk one day and a day off the next, add a couple of minutes the next and rest again - and so on. It sounds ridiculous, but it works and grows. One man was in a wheelchair at Easter because of PMR, by December he was able to ski and instruct for the season. He then spent the summer riding his bike up mountains. But only because he literally added 5mins max per day!
Usual starting dose is between 15 and 25mg, so you are right in the middle. People usually stay on starting dose 4-6 weeks before trying to reduce. Very few are pain free, most have some pains left, but nothing as bad as before prednisone. Increasing pred will NOT "bash it once and for all", because new inflammation is created every day. It does not make much sense to increase dose now IMO, you are better off to make sure PMR symptoms are stable. Any accumulated inflammation will be taken care over time. After 4-6 weeks on the same dose, you would want to taper down in small steps, never to exceed 10% of the dose. At this point people do 2-2.5 steps reduction; 20, 17.5, 15... Hope that helps.
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