I've just found the reducing plan the GP gave me when I was.prescribed Prednisolone. 15mg starting dose, after 3 weeks reduce to 12.5mg, another 3 weeks reduce to 10mg, then aim to reduce 1mg every 3 weeks but increase by 1mg if it starts to flare. That makes approx 36 weeks in total.
I haven't found it effective so far, I wondered what others think of this schedule
It’s suggested in most guidelines so is commonly given to patients. For some it works, but for many it doesn’t…
Personal opinion…
initial dose needs to be longer, 4 weeks at least. Many moons ago it used to be 6 weeks [until doctors got scared of Pred].
Then if you cannot manage the 2.5mg reductions, 1mg per month.
Unfortunately, you don’t know if you can follow the ‘suggested’ one until you try.
I felt great at first, symptoms gone after 48 hours confirming diagnosis. After reducing to 12.5 it wasn't long before symptoms returned. I then yo-yoed up and down between 12.5-13.5-14.5 and back to 13.5 at which I stayed until last week when I upped by 1mg a day to 14.5mg again because of travelling and being away. I think I'll mention the 1mg a month plan and see what the response it. Thanks for the input Dorset Lady x
It is a pretty standard approach but it only works well when the disease activity is the sort of level that will need well under 10mg pred to manage it. Most people get to that eventually but often in the early weeks of the illness it can be quite high and needs more pred. As DL says, they used to leave patients on the starting dose for more like 4 to 6 weeks and the same for the next couple of levels but they got concerned about side effects of pred and decided to reduce the dose faster. The theory is fine - but the practice is a whole other story.
Some people manage it fine, others struggle from the outset - just to show that this is not a one-size-fits-all illness.
That plan certainly wouldn’t have worked for me! Basically, I reduced by 10% of my dose at a time from the beginning, and never sought to reduce if I felt any pmr symptoms. Sometimes it was three or four weeks at a dose, but more often a lot longer, and up to six or eight weeks.
It really is a question of listening to your body, and being very patient.
Good luck.
Wouldn’t it be a great thing for all doctors with PMR patients on their lists to have some knowledge of this forum and consult it when people return to them when ‘The Plan’ doesn’t work? There should be an addendum attached to ‘The Plan’ that doctors give out to ALL their PMR patients saying something like, “This is general advice for ALL patients; it must be recognised that this is not a ‘one size fits all plan’ which may work for some but not for others. Close attention must be paid to individuals’ symptoms and adjusted accordingly with doctors co-operating and respecting the fact that patients know their own bodies better than anyone.”
It would be good start if they actually read the guidelines as well which does actually say something similar and also states -
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 alternate days, etc.)
**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.
Therefore, 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.
Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes.
When did a suggestion become set in stone for some?
Thank you for this. I haven’t seen those actual guidelines. I thought they must be fairly recent and a quick look online brought up NICE guidelines 2024 but they would have been the same in earlier years, The NHS (2023) article is slightly more vague but it’s clear that greater understanding depends on articles actually being read by professionals. We, as PMR patients have our illness only to read up on; GPs especially must have a myriad of papers to get through. Not excusing any poor knowledge and a good GP would do well to consult latest guidelines when things aren’t going well for patients on a particular plan.
They are in the guidelines on the charity’s webpage -and dated Nov 2009. ..and others
Mind they do state treatment required 1-2 years -so some obviously read that -and believe it!
2009! Needs looking at methinks!
It is the basis of most of the newer ones - and the majority of the info is the same with a few tweaks.
I would normally say tweaking can be an improvement but may well cause confusion-my opinion. In the annals of my memory bank I recall a song entitled, “Rip it up and start again”. Would hold more weight, surely.
As per PMRpro comments below re chair of committee - I would say ‘be careful what you wish for ‘.
I gather CM at Norwich is leading the committee for the updating of the Guidelines - hopefully as chair and author his extreme insistence on the 2 year duration and fixed tapering will be tempered by the rest of the committee as it is usually a consensus. If not, it could set us back 10 years ...
It is mentioned in every single plan I have seen in the literature - but they seem to ignore it, Emphasised in Dejaco's paper on Treat to Target in PMR and GCA - and I get the impression that almost no-one has heard of it never mind read it!
Thank you for your replies. I am struggling and have sent a message to my doctor this morning. I will report back later.
I think I was started on 20mg but I felt a bit high on it so went down to 15. I don't think I was given a reducing plan but I do remember being told that I'd slowly reduce the amount over two years and then I'd be fine! That was in 2017. I know my GP reduced me to 10 quite soon and that was too much so then I went back up to 12.5. Too much yo-yoing at that point meant I ended up at 15 for some months as my ESR stayed stubbornly high so my GP referred me to a Rheumy. He confirmed that I did have PMR, and also Fibromylgia. This was over a year from initial diagnosis. He said to reduce to 10 by one mg a month and then by 0.5 a month from then on. I've mainly followed the advice from this forum and my GP has always been quite happy to follow my own plan.
I'm late to the game, but the wise wise! ones have given you good advice for sure. I wish you well with the slower and safer plans that have been suggested. In this journey, going slow give you better odds for success. Be kind to yourself💞
Hello, I agree with Grammy. I was also reduced too much too quickly and am sort of back where I started at diagnosis in early August 🙁
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