Tapering

[Seamab]

I would be grateful for some advice. I was diagnosed with PMR in March,I had tapered down to 6mg,but was starting to experience stiffness in the shoulders and upper arms,so increased to 7mg,however that didn't really help much,so this morning I increased by 5mg to 12mg.My plan is to stay on this for at least 7 days then reduce to 10mg for 7 days then to 8mg---does that sound reasonable? My next question is what to do at 8mg,I feel I have been told to taper too quickly,which at 10mg was reducing by 1mg every 4 weeks.Should I reduce by 0.5mg every 4 weeks or leave it at 1mg,but with a longer time between reductions eg 6 to 8 weeks?

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare - so in line with what you are thinking - although you may need a little longer than 7 days - just see how you go -

healthunlocked.com/pmrgcauk...

Suggest you stay at 8mg for 3-4 weeks, and yes then taper by only 0.5mg a time -and using one of the slower tapers we talk about - more helpful for PMR and adrenals once you get to this level of Pred - either one of these - whichever you like the look of - aim is the same and similar time taken -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

This also explains about adrenals -

healthunlocked.com/pmrgcauk...

[Seamab in reply to DorsetLady]

Thanks once again for the advice.

[PMRpro Ambassador]

You seem to have a got a grip of the pitfalls - well done!!

[Seamab in reply to PMRpro]

Thanks. I was actually having a look at the 1 day new dose 6 day old dose etc reduction plan,for when I get to 7mg.Can I just check I have this right? You are reducing by 1mg,so there would be no need to split a tablet? Once I get to 1 day old dose 6 days new dose,do you then do 7 days new dose or just go to the next stage? Also below 5mg you would take new dose for 4 weeks before going to the next stage?

[PMRpro Ambassador in reply to Seamab]

If it works for you then 1mg should work OK- you can repeat any stage as often as you feel you need to slow it down further, It was partly developed to help patients on enteric coated tablets 10+ years ago when there was no 1mg tablet and all you could do was 2'5mg at a time or add in plain pred which some couldn't cope with. If you struggle with 1mg then maybe try 1/2mg,

As for progressing - see how you feel. After 3 attempts at the new dose I found I adjusted to it and then soon found the old dose felt wrong - I could go to all new dose. Listening to your body is critical. And absolutely - the lower the slower. It isn't slow when it works!

[Seamab in reply to PMRpro]

OK thanks for that.

[Zebedee44]

Hi, it sounds to me like you were poorly advised on tapering and that in fact you reached your happy place without realising it, as did I. As PMRPro frequently reminds people you are not reducing the steroid to zero, and it is no time at all since diagnosis in March to have reached 6mg. Once you are back to feeling well with less pain you probably need to just take it much slower and be happy your body is ready for the next step down, remembering that your adrenal glands also have to join the party again after months of early retirement.

[Seamab in reply to Zebedee44]

Yes,lesson learned! DSNS tapering from now on!

[Worthy10]

Hi, same here Seamab, I was diagnosed in March with PMR. I tried to drop from 11.5 to 10ths, to quick. Spoke to my doc and he agreed 0.5mg reduction every six weeks. Hope this helps. 👍

[Seamab in reply to Worthy10]

I stayed on 12mg for 2 weeks,I'm now on 10mg,which I'll stay on for 2 weeks,then 8mg for 4 weeks,then one of the DSNS reductions after that! As a matter of interest, are you just going to do a straight 0.5mg reduction ie halving a tablet or are you going to follow one of the DSNS plans eg Dorset Lady devised one,but there are others?

[PMRpro Ambassador in reply to Seamab]

What are you waiting for 8mg to start smaller drops? The univesal recommendation is 10% of the current dose, 1mg at 10mg and what all the reductions in the literature say once you get to 10mg. 2mg is double that,

[Seamab in reply to PMRpro]

Yes, but I was actually down to 6mg,then started to get symptoms,so upped to 7mg,that didn't really help,so I added 5mg,as per recommendation,took the 12mg for 2 weeks,then rather than go back to the dose above when symptoms started to appear,decided to stage it and go to 10mg for 2 weeks(which I am currently on),then to 8mg,which was holding my symptoms,for 4 weeks, then DSNS reduction after that.I know you have a deep knowledge of this illness,so if you think I should be doing it some other way,I would be more than happy to take your advice.

[PMRpro Ambassador in reply to Seamab]

No, OK, that should be fine then. Just not used to people doing the return in steps.

[Worthy10 in reply to Seamab]

I am going to drop 0.5mgs every six weeks, seems to work for me, everyone is different I suppose.