Tapering Formula question for PMRPro

[DrRon]

I am hoping I remember correctly, that you were the person who some time ago provided a list of steps for tapering, and each step for a calendar looked something like this: 1 day old dose, 2 days new dose.

If you could repost the entire series for me, I will be grateful, since I am doing 3mg Pred, and I know the next steps are crucial ... I have been at this moment before ... my body was happy with 4mg for over one year, then very gradually tapered to 3 but unsuccessfully ... went back to 4; some time has passed and I've done 3mg for 3 wks with good results.

Ron

[DorsetLady PMRGCAuk volunteer]

This is PMRpro’s original post, but sure she’ll be along with comments in due course

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Sorry - not quite clear what you want other than the direction to the post DL has provided.

At this low dose you should be using 1/2mg steps really and slowing the process - same steps but repeat them a few times before proceeding to the next one.

[SVLady in reply to PMRpro]

So with your very slow taper protocol there are days during the first week where you take no steroids at all, especially the last few days, is that correct? I guess I fear the pain would return on the non steroid days?

[DorsetLady PMRGCAuk volunteer in reply to SVLady]

No… think you are mis-reading. Nowhere does it state take no dose…

It not based on weeks [like my taper] - it’s based on days..maybe read it again. 😊

[PMRpro Ambassador in reply to SVLady]

No, it isn't week-related, it is a continuing process. The best way is to use a monthly calendar and start with the 1st. Day 1 is the new dose, the following 6 days are old dose. Then 1 day of new dose, the next 5 days are old dose. One day of new dose, 4 days of old dose. And so on, always reducing the number of days of old dose before the next new dose. Until you get to 1 day new dose, one day old dose. And then if you need to you build up the days of new dose but some feel ready to go to every day new dose. See how you feel/

[SVLady in reply to PMRpro]

Oh, thank you for the very helpful clarification. That makes such sense and I can see why so many PMR people follow your guideline. Very grateful to you.

[DrRon]

To you (2) BOTH, DorsetLady and PMRPro my thanks. That was the link I remembered and it contains the pattern of reduction 1mg at a time & in this manner: 1 day new dose, 6 days old dose; 1 day new dose, 5 days old dose; 1 day new dose, 4 days old dose; and so on. So a question to your recent response PMRPro, using that pattern would you still say 1/2 mg steps?

[Bcol in reply to DrRon]

If you are starting a 3.0mg as your old dose, then you would have 1 day at 2.5mg, 6 days at 3.0mg followed by one day at 2.5mg then 5 days at 3.0mg then continue following as in the post linked by DL. Working in 0.5mg steps may seem as if it would take longer but in reality it will be more successful and if you don't have to go back up will result in you taking less Pred as well as being quicker in the long run.

[PMRpro Ambassador in reply to DrRon]

Yes. The smaller the change the better at this stage. No reduction should be more than 10% of the current dose - below 5mg that is difficult so you need 10% AND the slowed taper!

[Dance62 in reply to PMRpro]

Thank you PMRPro - what you've just said I think is going to be helpful in my situation. I'm tapering 1mg every 28 days. I'm now down to 3mg as of 8 days ago and I feel absolutely dreadful. I have GCA ( the aortitis version) and am utterly drained and panicking about why I feel like this. My added complication is upcoming abdominal surgery, for which they want me on the lowest possible dose of pred. Haven't seen a rheumatologist since January but the anaesthetist I spoke to on Wednesday about my operation said my CRP levels had risen to 27 last month. She recommended I call my rheumatology team which I did, in case they want me to up my steroids but so far no call back which usually means stay as you are. I'm due to have bloods as usual next Friday but in the meantime I've decided unilaterally to go 4mg one day, 3 the next. Does this sound sensible?

[DorsetLady PMRGCAuk volunteer in reply to Dance62]

Have to say as you were only diagnosed with GCA/LVV in September last year you have got to 3mg extremely quickly. No wonder you are having some issues.

I appreciate you have surgery on horizon, but sounds as it both your adrenals [exhaustion and panicking typical affects of that] and your GCA are struggling… and CRP levels of 27 are high - whatever the cause, and I very much doubt that 1mg every other day [not a method we prefer] is going to help much.

How long before your surgery is scheduled?

Normally would suggest you follow the flare protocol - explained in link -dropping back down to 4mg, as 3mg is obviously not enough - but in view of surgery you do need to discuss with Rheumy Dept and/or surgery team.

healthunlocked.com/pmrgcauk...

Much smaller reductions in future, 0.5mg a time, and a much slower taper-and as long at each dose as required.

Good luck with surgery.

[Dance62 in reply to DorsetLady]

Thank you very much for your advice. My surgery will hopefully be in 4 - 6 weeks. After that, it doesn't matter about the pred dose.

[PMRpro Ambassador in reply to Dance62]

I agree with all DL said but won't repeat it.

What is more to the point - the pred dose matters before AND after because if you are not producing cortisol to replace the lower pred dose, your body is less able to cope with the stresses of all sorts associated with surgery,

If your CRP is rising that is suggesting that the underlying cause of the GCA is still active - not in the least surprising after only a year - and you are now on an inadequate dose of pred to manage it so it is building up. Given the speed with which you must have been reducing the dose - you don't really know WHERE the pred dose started to be not enough and just returning to 4/3 on alternate days may well not be enough to get it under control. And THAT could well lead to them being unhappy about surgery at all so you do need to get it properly under control. You must speak to both teams, rheumy and surgery.

[DorsetLady PMRGCAuk volunteer in reply to Dance62]

After that, it doesn't matter about the pred dose.

Oh but it does.. as PMRpro has explained.

[Dance62 in reply to DorsetLady]

Thank you both. I will make another call to the rheumatology team tomorrow.