How long do I stay at 3 mg after a flare?

[gingerraspiller]

Started prednisone August 2022. Starting at 7.5 mg i did long slow taper per guidelines decreasing 0.5 mg each time.

I slow tapered to 1.5 mg by April 8. After 13 weeks at 1.5 mg, I started to feel pain in my shoulders that didn't go away. I tried 2 mg for 10 days but that wasn't enough. With advice from this forum, I assumed it was a flare, increased to 4 mg for 14 days.

I dropped down to 3 mg and have been there for one month. Feeling good.

Questions:

How long should I stay at 3 mg?

I will follow slow taper protocol - how much should I decrease each time? Is 0.5 mg too much? Should I go down by 0.25 mg each time?

As I am tapering, how long should I stay at each level?

I want to get this right ... do not want to flare if at all possible.

Thank you all!

Ginger

[PMRpro Ambassador]

However slowly you go, however small the steps and however long between, there is no guarantee you will get all the way to zero. You are not reducing relentlessly to zero, you are looking for the lowest effective dose for YOU at any specific time. If you get to a dose of pred that is not enough to manage any inflammation, you will get symptoms again.

That said, it does look as if 1,5mg simply wasn't enough - but only very slightly not enough given the time it took for symptoms to appear as the unmanaged inflammation built up. At this stage I would think you will manage 1/2mg steps over a period of 6-8 weeks using one of the slowed tapers - but only down to 2mg. I suspect the reason you "failed" at 2mg was because the small increase wasn't enough to clear out the built up inflammation causing the symptoms. So there is no reason not to aim for 2mg.

Once you get to 2mg, I would stay there for at least a couple of months - it took 13 weeks of 1,5 before you felt it, so longer at 2mg wouldn't be out of place. By then, you will be several months down the line - perhaps time to try another 1/2mg over 8 weeks or so before a rest at the new dose of 1.5mg for a couple of months. This isn't a race and even though it sounds slow - it isn't slow if it works and you don't need to go back to a higher dose.

[DorsetLady PMRGCAuk volunteer]

As it took about 3 months for your last flare to materialise [did you do anything specific to cause that - extra activity, under stress etc] would say maybe you need to give it more time than most. Actually at 3mg there really is no rush, so maybe try 2 after another month - that will have given adrenals a chance to catch up as well.

As for tapering, sorry to sound boring, but it really is a very personal experience… many can reduce 0.5mg a time and stay at each taper for about a month and manage very successfully… others cannot and need 0.25mg a time and take months to get from one dose to the other.

I know you only tapered by 0.5mg a time, but did you use one of the slow plans we advocate on here? If you did, you can elongate those by repeating each stage to give your body more time to adjust …

Another thing we always talk about on lower doses in particular in the 10% rule - not reducing more than 10% of current dose- and obviously that gets much hard the lower you get. So as small as reduction as is possible also helps - so you might try 0.25mg drops.

…just to reinforce message - no rush whatsoever…

[gingerraspiller in reply to DorsetLady]

Thanks for your response. I did use the longer of the slow taper plans. I did not have any unusual stresses. I have been at 3 mg for 32 days. I will plan to stay for another month before starting a slow taper to 2.5 mg. I will double the taper time. Once I get to 2.0 mg, I will reduce by 0.25 mg if possible.

[Sharitone]

In a similar position to you, I have reduced from 3mg to 2.75. But this was because last time 2.75 was not enough so I'm going very carefully. It's no fun having to go back up again!