How long to stay on previous level after a flare when tapering?

[Caniwi]

Struggling to have my body play nice with my Dr’s Prednisone schedule:

20mg/2 weeks

15mg/1 week

10mg/1 week

Then reduce by 1 mg/month

First 2 weeks ( 20mg ) were great, the 15mg week was about 90% pain free, but after 2 days on the 10mg rate my pain was back in full force.

I’m now back on the 15mg rate for a week. How long should I stay on that before I do the next taper?

Finding my Dr is a bit of a challenge (3 week wait for a telephone appointment!!) so I’m going to have to figure this out myself. My research tells me the Dr’s plan is too aggressive so I plan on decreasing by 2.5 instead of 5 next time, & add a further week before repeating. Does this seem reasonable?

Appreciate this forum, I’ve done a ton of reading & learnt a lot about PMR (which I’d never heard of untill that horrible day in mid October). Thank you

[DorsetLady PMRGCAuk volunteer]

With that tapering regime-no wonder you’re struggling…more in line with short term use of Pred in other illnesses not PMR.

You need initial dose to be at least 3 weeks , but 4 is better. ..

but in your case you MIGHT get away with 2 weeks as it’s a flare… but then if you try to go down to10mg in one step it’s likely to result in same result.

Most guidelines say 15-12.5-10mg with 2 weeks at each dose - but many cannot manage that…so we suggest a 1mg step down. You may manage it, but with your chequered start I wouldn’t bank on it.

You need at least 3 weeks (4 is better) at each dose to KNOW it’s enough before you reduce .

Not sure if I’ve linked this before - apologies if I have -but you need to know all about your illness and treatment-not sure you can rely on your doctor-

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I'm not in the least surprised with an approach like that!!!! What on earth makes them thing it is going to work? That is like no reduction plan i have ever seen.

If your initial response was that good and you have next to no pain - that is what you should aim for with every subsequent taper step. Tapering isn't the same as reducing - in tapering or titration the dose you are looking for the lowest effective dose for YOU, not someone else. You find that by careful reduction steps - not too big, preferably never more than 10% of the current dose and allowing AT LEAST 2 weeks to be sure that the new dose is enough but 2 weeks is not much, previously the good doctors left patients at the new dose for a month to be sure.

This is the taper approach used by one of the top PMR groups in the past - and the author, Vanessa Quick, is now Prof specialising and researching in GCA at Luton Hospital in England. She still uses the same approach. Because it works.

rcpe.ac.uk/journal/issue/jo...

The fact 15mg wasn't quite as good as 20mg was the first red flag - sometimes that change is a response to the change in dose being too big, but you don't then plug on hell for leather to have halved the dose in 2 weeks! Most people will manage 2.5mg at a step down to 10mg - PROVIDING they don't do it every week or even 2 weeks, 3 weekly at the very least.

Most people will need well above 10mg for the first few months - there is no point rushing it because all that happens is you have to start again. Our way may look slow - but it isn't slow when you don't have massive flares and have to go back to the start, risking it getting increasingly difficult to get things under control and reduce the dose.

[jinasc in reply to PMRpro]

Is Quick working with Kirwan - thought he had retired when he left Bristol?

[PMRpro Ambassador in reply to jinasc]

No - Prof in her own right at Luton and doing research. Sarah Mackie is to be her supervisor for her PhD on diagnosing GCA

[jinasc in reply to PMRpro]

Thanks, it was just when I followed the link his name was beside hers.

[PMRpro Ambassador in reply to jinasc]

It's the management paper from 2010 (I think) when she was training with him

[jinasc in reply to PMRpro]

That makes me a happy bunny. Off to lunch and then square eyes time and if they are as good ( and hilarious) to watch as yesterday??????????

[piglette]

My gosh, I would be lying on my back in total agony with that sort of reduction. You really need to leave around four weeks between each taper to ensure that the PMR is still suppressed. Also I found under 7mg 0.5mg a month reduction is better although you may manage 1mg.

[HeronNS]

My experience: start 15 mg for one month. Then taper by 1 mg a week, stopping if pain recurs. In fact I was, luckily, fine until I got to 9. At that point I returned to 10 for about three weeks, then tapered from then on using a slow taper method, with a month at each level. As my dose got lower I tapered by .5 mg a month, and eventually was tapering every six weeks. At no point did I ever reduce my dose by more than 1 mg at a time. I was at 3 mg by the end of the first year. My eventual "lowest best dose" appears to be 2 mg and I haven't yet successfully reached zero, despite several attempts.

[Mewy]

I was diagnosed in Nov. My NP prescribed 15 mg Pred for one month and when I was still having pain she extended it by one more month. Then 12.5 mg for one month then 10mg. I have a telephone appointment with her mid January to check on the 12.5 mg regimen. She refers to the guidelines for PMR in each of my phone appointments. Since this is a relapse I feel she is taking my input into consideration. Just thought I would share my NPs tapering approach with you. I think our body guides the taper approach.

[Redwhitebooze]

Hello Caniwi. I agree with Dorset lady. Your taper is way to fast. I found that some doctors have very little knowledge about PMR. One doctor I went to kept calling it Fibromyalgia. If you can, try and get an appointment with a Rheumatologist. Until then I would follow Dorcet Lady's advice. Hang in there and stay on a dose that causes minimal pain and stiffness ,then slowly taper. I'm off Prednisone now and only have shoulder pain which I'm working on with exercise and diet.

[Caniwi]

Thanks for all the responses. Pretty clear I have to slow it down. I’m now on one full week back at the 15 level, & am planning on 2 more weeks at least.

Just a little unsure of the criteria for determining if I’m ready for a reduction attempt. i.e. do you have to be totally pain free or just mostly?.Right now I’m taking the pred at about 6 am, but am pretty sore/stiff until about 10am then I’m mostly pain free - maybe a lingering twinge or two - until next morning.

Do I need to wait until there is zero morning pain? Or maybe that never goes away….