This is my first post please excuse any errors! I was diagnosed in October 2022 with atypical PMR - pain and stiffness in my lower back and legs and pain on walking in my left neck, shoulder and clavicle. I started on pred in November - 20mg for 1 week, 15mg for 8 weeks, 12.5mg for 2 weeks, 11.25/12.5mg for 1 week, 11.25mg for 1 week, 11mg for 2 weeks and have been on 10mg for 2 weeks.
I have had a minor flare in the last week - some back stiffness and pain in my calves at minimal activity and feeling unwell. I guess I tapered too quickly but does a minor flare warrant an increase of 5mg? In response to an e-consult a GP (not my own) recommended by text an increase of 2.5mg. Do forum members think this would be enough?
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FleetRose
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The increase of 5mg is only for a few days until the flare symptoms have settled and then you go back to the dose above where you were good at before the flare. In our experience, 2.5mg may work but it may not and creeping upwards rarely works well so you end up taking more pred than if you had just used 5mg in the first place,
I think your fundamental problem is you have changed doses too often for the body to know where it is. At this stage, one of our slowed tapers to drop 1mg over 3 to 4 weeks will do the same as your fiddling about with the little dose changes and you have a better idea where you are. If I were you, I'd add 5mg for a few days until you feel well again and then drop to 11mg and start a new slower taper to 10mg. You are fine to do that as long as you aren't at the higher dose for more than 10 days or so.
It isn't slow when it works and you avoid shuffling up and down plus yoyoing the dose can make it harder to reduce again in the longer term.
2.5mg may be enough - but you won't know until you try. If it does work, I'd be inclined to stay there for 2-3 weeks.. just make sure. and also to use that as a restart dose.
I can understand why you reduced as you did, but as you have discovered only staying for 1 week at any dose, is not long enough to know that is sufficient - so when you step down again for another week you are already on too low a dose even before the next reduction.
Even with 1mg steps you need to stay at each dose for at least 2 weeks...in can take that longer for a flare to materialise.
Your start was good, but in hindsight you should have stayed at 12.5mg for 4 weeks.
You might like to have a look at this intro post - and then in the fullness of time the FAQs
Thank you for your very helpful reply. There is so much to get to grips with! I’ll spend some time looking at the links but am so glad I’ve found this forum for support. 🙏
hello Dorset Lady and PMR pro, I forgot to mention that I had already been diagnosed with fairly severe osteoporosis before I started on pred. It is a huge worry for me. Also I am very petite (weight 44 kg) and am not sure if doctors take this into account when deciding on drug dosage. Do you have any thoughts on this?
There is a sliding scale for initial dose - between 12.5mg - 25mg - so doctors do use their judgement based on severity of illness and others factors [how much weight comes into the decision not sure]…
As you started at 20mg and after a week reduced to 15mg that may suggest it was - I really don’t know.
unfortunately I could not tolerate the usual bone drugs - Alendronic Acid etc because of gut issues and multiple intolerances. I have taken calcium, D3, magnesium and other supplements for years, walk every day (or did!), practice Pilates and yoga. I have just been prescribed HRT. As my T score is getting gradually worse.
I'm still learning how to use this site so hope this follow up question is in the right place.
Two weeks ago I increased my pred from 10mg to 12.5mg after a minor flare. This was after reducing from 20 mg last November with too fast a taper towards the end.
I feel ok now but would the advice be to drop to 11mg (2x5mg plus 1mg) i.e. more than a 10% drop, or mess around with a drop to 11.5mg (5mg plus 2.5mg plus 4x1mg - messy!).
Also should I introduce the new dose alternating with the old one over three weeks say or is this advice more relevant at the lower doses?
I really value everyone's advice on this amazing site, thank you so much. Otherwise it can be a lonely and depressing struggle.
Up to you, how you drop -you might be fine dropping to 11mg -but you won’t know until you try.
As for your other alternative -it might be “messy” but if it works better - it’s worth it -and you’ll probably need to do at lower doses anyway -so get into the habit 😂🤣..
Some need a slower tapering regime at higher doses than others -and if they have had previous issues (no fault of theirs) they feel happier using it. Personal choice really.
It's OK asking a question here in your existing thread but if you had wanted a range of replies, starting a new thread would have been better, DL and I follow every thread so see all such questions but most people rarely return to a thread having read a post and unless they "Saved" it would't be notified of a new question or comment unless it was to them personally.
I was thinking of the pred dosage. I’ve come across problems with this before. In children weight is always used to calculate doses and in chemo too, otherwise it’s a one size fits all and I am prescribed the same as a man twice my weight. Not good!
A study was done that looked at response to a low starting dose of 12.5mg, 75% of patients achieved a reasonable result in a month - with smaller women doing better than larger men. Most people expect a quicker response than that though and there are a lot of variables - a large person may have a lower disease activty than a smaller one. It varies a bit depending on what tissues are affected - the 15mg I was started on sorted the muscle symptoms in 6 hours - but the bursitis in hips, feet and hands took months to go altogether. Others, smaller than me, found 20mg took longer to have an effect. There are also various versions of PMR it seems that respond differently. And there is no way to distinguish them in advance. A bit too much is preferable to not enough - too many doctors don;t get the concept that maybe a higher dose is needed for this patient. If you don't need quite as much you will be able to taper easily - that is the point, you start with a bit too much and taper to find the individualised dose.
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