Some time since I wrote here but need your advice again.
I started on 15mg Pred in October 2015. Slowing cut down since and I am doing well on 5mg for the past 3 weeks except for slight aches across my shoulder on waking relieved by my morning dose.
Do you think I could cut down again yet?
Is it possible I could be off Pred by October this year?
Thanks
Don't ever make the mistake of planning a date by which you will be off pred - PMR has its own rules and while you may have done OK thus far it could just as well be that your longer term dose to manage the symptoms is 4, or even 4.5mg! If you thought you'd continue as you have for the last 9 months and be off pred in a year you will just be disappointed if that is the case. If, on the other hand you are able to keep reducing as you have been and get to zero it will be a wonderful gift!
Some rheumatologists in the USA wrote some years ago that about a quarter are able to get of pred in under 2 year - but are a higher risk of a relapse sometime later. About half take up to 4-6 years and the rest take longer.
You are also at the stage where your adrenal glands have to start working again and while 5mg is only just below the threshold, as you reduce further they have to work harder and they don't settle down quickly. Even after stopping pred entirely it takes up to a year for the to be able to cope with stress the way they should. One top PMR expert in the UK likes his patients to spend a few months at 5mg, even up to 6 months or more, before continuing the reduction. It seems to help the rest of the reduction go smoothly.
Five mgs is a low dose - anything below 7.5mg is called a physiological dose and is about the same amount of corticosteroid your body makes naturally, it is essential to life. The side effects now are minor so a few months here or there really is not important. Far better not to rush and risk a flare that would possibly mean a return to a higher dose.
I'm not saying don't keep trying to reduce - what I'm saying is go very slowly and in very small steps. If you are really lucky you WILL manage to stop the pred - but if you have any signs of a flare it is better to accept where you are happily. The fact you say you have niggles in the morning suggests you are close to your limit of reduction - for now at least. You will get lower later.
I had got down to 4mg last autumn and tried for 3,5mg. I was SO tired I went back to 5mg where I felt really well. And then I had a flare in January that took me back to 15mg and I'm now at 10mg. Was it trying that extra reduction? I'll never know.
Thanks so much for your detailed advice which has helped me to listen to my body and decide. I will refer to your message over the days and months as it is so wise and useful.
Hi Cassie
Well done to get down to 5mgpd within a relatively short time!
The best advice seems to be for any further reduction in pred dosage to be led by your symptoms, not necessarily by even the best of tapering 'plans'. If you can tolerate low levels of pain / stiffness etc without it significantly affecting your daily activities, it sounds as if you're on about the right dose to control the symptoms... at the moment.
Here's the unpredictable (and slightly un-scientific) bit with PMR: if you can reduce the average daily dose (by however small a degree) over time and don't have any flares or withdrawal symptoms, it makes sense to keep going very slowly. Of course, getting off of the preds is the ultimate goal for us all - but PMR does have a life of its own and can defy all logic in terms of symptoms / treatment regimens.
If you have any significant reaction (i.e. more pain / stiffness / fatigue etc) as a result of reducing, however slowly, then you've probably over-stepped the mark. In this case, rest is the advised remedy as opposed to immediately upping the preds to get rid of the symptoms (in which case you go back to square one in terms of the length of time to get back down to the previous level).
Many experts here say that it's at lower levels of steroid tapering (i.e. < 10mgpd) where reductions have to be even more gentle percentage-wise: and, if necessary at longer intervals than before since the adrenal glands need to start to wake up and (hopefully) perform their natural function again after a long lay-off. This really is a 'softly-softly' process, as I have discovered.
My advice is NOT to set a target date for getting off of the preds - this might cause you reduce the dosage too quickly with painful (and potentially dangerous) physiological catch-up effects later. I know it's a frustrating process but try to just roll with it, listen to your body from day to day, and go with the flow symptoms / pred dosage wise. Prednisolone reduction isn't a race against time - it's a subtle process of weaning-off from a powerful drug that you need patience to navigate safely and successfully for 'recovery' from PMR (as best can be achieved) in the long term, and to enjoy some quality of life in the meantime.
It sounds like you're well on the way, but don't get carried away! 
Hope this helps
MB 
Yes Mark your info has helped and there is lots to consider - good advice to rest if symptoms return and not just go to a higher dose again.
I will have another in depth read again soon.
Thank you Cassie
Really, if symptoms start to return the procedure recommended by most experts is to return to the last dose you were OK at - which is really the dose you are reducing from. If symptoms are returning because of a flare it is better to do that than to ignore them because if you delay you may end up in a real flare that is difficult to get under control again. If the pain continues to worsen despite rest always do that, don't ever put it off.
All you are doing is putting it off a few weeks - it doesn't mean you WON'T get lower, it means your body isn't quite ready yet. You just wait a month and have another go - but watch out for niggles that start after a few days and get worse. That's the sign of a flare.
Hi Cassie,
Great advise from PMRpro and Mark and that they share their knowledge in such detail.
I was only diagnosed with PMR 3 weeks ago after months of agonising pain. The consultant said I would probably be on the Prednisolone for at least 3 years and maybe for life.
I started 3 weeks on 5mg x 3 a day.
Yesterday I reduced to 12.5 for next 3 weeks.
Then I go to 10 mg for 6 weeks.
Then reduce by 1 mg every 4-8 weeks depending on symptoms.
This forum has been so helpful to me and brought home the importance of a very slow reduction so much so that If there is the least sign of my pain returning I will stop the reduction immediately and see my GP.
I've read all about the damage Prednisolone can do to our bodies but the quality of life it affords me at the moment far outweighs any side effects or long term damage .
I think you've done really well to get down to 5mg but please don't be too hard on yourself and expect too much.
Take care.
Mish
Hi Mish,
Although you have your 'plan' for reduction please bear in mind that you need to take your symptoms into consideration at all times, and don't reduce just because it's written on a piece of paper whatever. Our Drs give us their ideal reduction plan, but as we all know life doesn't always follow the rules!
Might be useful once you get to 10mg to reduce by 0.5mg a time rather than 1mg, if everything goes okay you can still achieve the same goal, but with much less chance of problems - at 0.5mg your body is less likely to react than at 1mg. Plus when you get to about 7mg your own adrenal glands need to start working again, which sometimes makes reducing a bit more difficult.
Don't wish to sound negative in any way, but slowly is the way forward, and we're all a bit guilty in wanting to rush things. If you keep the Consultant's view of 3 years in mind, and can get off the Pred any earlier then that's a bonus! Good luck.
Hello Dorset Lady,
Thank you for the advice about Pred reduction. I am actually quite nervous about the 'plan' because we all know the best laid plans..
Also I was given 5mg tablets and bought a cutter so I could take the correct dose but how do I divide 12.5 x 3?
I took 5mg then 2.5mg then 5mg but I have now decided to take 61/2mg twice a day and I'm hoping that will be ok.
Watch this space.
Have a nice and many thanks.
Mish
The generally recommended way to take pred in PMR is as a single daily dose in the morning - so I suggest you try to discuss that with your doctor at some point.
The idea is that it gives a strong antiinflammatory effect in the morning soon after the new daily dose of inflammatory substances has been shed in the body. Pred is also excreted from the body in a few hours while the antiinflammatory effect lasts for 12-36 hours - and that means your body has several hours a day with very low levels of pred which helps to avoid side effects and possibly helps sleep at night to be better.
If you are more a 12 hour than a 24-36 hour person you may find splitting the dose helps get you through the night - but then about 2/3 of the total dose is usually taken in the morning and the rest in the evening.
Hi again,
Ask your GP for 1mg tablets as well as 5mg, then you can mix and match as necessary. As PMRpro says most people take all their dose in morning with breakfast, but some seem to split it. I tried that, but it didn't suit so went back to mornings only. Like lots of things with PMR it's a matter of trial and error, and doing what suits you best!
Hi Mish
Thank you for your advice. Yes this forum is so helpful and I return to it when I need help or if I can make a contribution.
I have had really bad sciatica for the past few months and have been taking strong meds, because of the pain I sometimes forgot about the PMR but I think I benefitted from the rest and the physio in the swimmimg pool.
I felt quite good today but recently the heat has affected me with fatigue. Then I find as now it is like I have batteries and they have run down.
Hopefully I will have revived in the morning!
Best Wishes
Cassie
Very well done to get to where you are. PMRpro is so right, I was diagnosed Sept 2014 and in my hurry to get off Preds have paid the price was down to 4:5 last Dec and have messed about as I tried to get off within 18 months . Now back to 10 . Heed all advice.
Once I got to 7 mg it was a much much slower journey than I had hoped so don't set a deadline one only gets disappointed. it sounds like you're doing well , but PMR has its own ideas at times!
Good luck and all the best.
Cassie, just adding my experience here. I managed a reduction to about 5 mg in about the same amount of time as you, maybe a month longer, having started last June so a bit ahead of you. I've found starting every taper since then fairly difficult. However I start each cycle with a drop of .5 mg. If I don't feel well after the six days, I wait and try again the following week. If I feel well enough at the middle of the taper, the point where the new dose days start to outnumber the old dose ones, I reduce by another .5. That means through the taper there is no more than one day when the day to day dose drops by more than .5 mg, and I think I'm going to try to tweak things even more finely next time to avoid even that one. The point is, I always make sure I feel just as well or better at the end of each taper than I did at the beginning. I stay at that level for a few days or a couple of weeks, then start again. I'm currently at 3 mg, at the point where I will wait for a little bit to make sure it's good. There was a point during this particular taper when I thought I'd reached the lowest dose I could, and that was going to be 3.5. But quite suddenly, as though some blockage had cleared, I woke up one morning feeling much better and I was able to carry on.
No, I don't think you'll be off pred by October. Even IF your PMR has gone into remission by then you should still take longer to wean yourself off pred. But you probably will be at a much lower dose.
Thank you for you useful, detailed advice Heron and idea to taper by .5
is a good one. Your post is encouraging and that's what we need!
Cassie
It has been pointed out on the forums for a long time: No reduction should be by more than 10% of the current dose - so even at 10mg that means not more than 1mg and if you stay at 1mg drops that percentage increases with each reduction. By 5mg it would be 20% - and you should be using 0.5mg by then.
If for any reason you can't cut your tablets, then the Dead Slow and Nearly Stop approach helps a lot - as it also does below 5mg as the 1/2mg cut tablets also increase their proportional amount as you get lower.
There's been a little discussion recently about how to cut a 1 mg tablet into quarters, or is it even possible? Perhaps I'll try a reduction to 2.75 when I'm ready, and report back!
Which you get with 2.5 one day, 3 the next - that is the fundamental principle of the DSANS and how the Swedish gentleman who started the idea did it. In fact, he did it by spreading it over 3 days, so an even smaller step overall.
I can't get my head around that. How can a person do that and simultaneously be doing DSNS as we know it? I'd never be able to keep track.
He didn't do DSNS as you know it - his was the precursor.
I know, but I was wondering how to alternate doses at the same time as tapering using the method you developed? One too many variables pour moi! 😀
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