Advice re split dose tapering - again…

[Tribie]

Hi, would like opinions/advice re my situation please. One year on Pred (diagnosed with PMR last January) starting at 20mgs, rheumy advised split dose as still in pain in the mornings from about 3am until 11 ish - pain-free from then on. Have been tapering with no problems by 1 mg every 4 weeks or so. Currently on 5 mgs 7-8am and 3 mgs 1-2 pm: next taper due this Friday. My questions are: now that I am below 10mgs should I start reducing by 0.5mg or could I risk another 1 mg drop, given that I have had no PMR pain throughout my tapering; and would it be better to alternate reducing between the am and pm dose (which I am inclined to do), or focus solely on trying to reduce pm dose to nothing, in view of possible adrenal issues to come as I lower dose? although I do worry about doing this in case I still need the later top-up. I’m really keen to avoid any flare, am happy to go very slow to achieve this. Many thanks in advance for all thoughts, advice and opinions xx

[PMRpro Ambassador]

I would think that taking only 3mg at late lunchtime means your pred level by midnight should be pretty low, especially if you can get it down a bit, After all, there is no point getting rid of it and then not having a good morning is there?

[Tribie in reply to PMRpro]

Thank you so much - I knew I’d get good advice from you! And do you think I can reduce this time by 1mg (so 2mg at lunchtime) or is that a bit quick?…

[PMRpro Ambassador in reply to Tribie]

Well I wouldn't, I'd go 1/2mg at a time. The lower the slower. If 1/2mg works OK, you can do another 1/2mg but if 1mg gets you in a mess, it isn't as easy to sort out.

[Tribie in reply to PMRpro]

Ok thank you, I’ll do 0.5 mgs then. We’re so lucky to have such an amazing resource…

[Tribie in reply to PMRpro]

Then if it was ok I’d leave it there and go back to the morning dose for a while…

[Zebedee44]

You might have reached the level where you are most comfortable after just one year and may well find that you need to stick at 8mg for a while longer. In my own case I tapered too fast, raised the dose and tapered again before sticking at 8mg for four years, 3at night and five in the morning. That way I enjoyed a very manageable and quite active lifestyle.

It is true that pred has bad side effects over years of use and I won’t pretend I have avoided them but the sad truth is that you need as much as you need and PMR won’t be bullied. QOL was important to me, and I do feel that it has been more difficult to achieve that juggling lower doses. You alone will know what works for you.

[Tribie in reply to Zebedee44]

Thanks so much for this Zebedee, I’ve been very lucky to be completely PMR pain free since the second week after starting pred, but have been taking it slowly, only ever reducing by 1 mg and staying there for at least 3 weeks, and currently 4 weeks since dropping below 10mgs. I totally get that at some point I’m going to reach my lowest comfortable dose for the present, and will need to stay there for some time but I don’t feel I’m there just yet. I completely agree that QOL is paramount and will be arguing that very strongly if any doctor tries to speed me up! It is somewhat trial and error I guess but at least the wonderful advice on this forum means it’s more of an informed choice instead of a stab in the dark! I’m so grateful to everybody here 🙂🙂

[WinsladesOffload]

I thought the advantage of having all your steroid at one time was that it gave your adrenal gland a chance to recover and hence easier to taper down successfully ?

[PMRpro Ambassador in reply to WinsladesOffload]

Depends - the dose is also relevant and the duration of taking pred. In short courses it is less of a problem, you take the dose all at one in the morning and it is said that mimics the normal adrenal pattern so there is less suppression. However, once you have been on pred for a couple of months or less time on a high dose, there is at least some suppression however you have taken the dose. Then the question only become relevant when you have tapered down to physiological levels again,

[WinsladesOffload in reply to PMRpro]

Thanks. That makes it a bit clearer to me.