Update from 'Shall I or Shan't I" from 5 days sgo

[Queenie1901]

It is now day 5 of taking an additional 5mg. (Was at 3mg, added 5mg). It has made such a difference! After day one I have had very marginal stiffness in the morning and just odd niggles here and there. Still aware of right buttock and left side of neck but I have discussed that before and it had been improving slowly. I have been resting more too. I decided to get to day 5 of the extra mg and then review the next few days. Thinking this.......are 5 days enough or shall I do two more days at the additional 5mg, total 8mg, then drop back to 6mg for say 2 days then 4 mg after that? Then sit at 4mg. Having felt so much less stiff and achey almost immediately I don't want to spoil it by too hasty a drop. I wrote to GP to explain as it is so hard to get to even speak to one and the response was a prescription for extra pred to cover the increase. (This is how it has gone along during my PMR journey due to the lockdowns. I send in an update for my records by letter. Any queries they ring me or just add to my file). I know this question is akin to "How long is a piece of string?" but I would welcome any thoughts. Thank you.

[DorsetLady PMRGCAuk volunteer]

You can stay at increased dose for up to two weeks without causing an issue with drop back down -I would go for between 7-10 days. Just make sure you have stayed at higher dose long enough to have cleared out all built up inflammation-or it’s a waste of time. So few more days.

The rest of your plan sounds good.

[Queenie1901 in reply to DorsetLady]

Thank you. Confirmed my concerns about acting too soon and potentially ruining the effort.

[SnazzyD]

To my mind there are two issues and one trumps the other. Controlling the PMR comes first so give it a fair crack of the whip rather than a few days as DL says. However, in doing that it may or may not have suppressed the adrenal function because you’ve gone back up to 8mg. Therefore you might find the fatigue is worse if you try to skip down the ladder like after a short boost. You might be fine but I’m just mentioning this possibility in case you are discouraged if your fatigue increases.

[Queenie1901 in reply to SnazzyD]

Thanks. I really appreciate the advice as I would not have been aware of this possibility. So a graded drop is more advisable like my plan to go to 6mg then 4mg ?

[PMRpro Ambassador in reply to Queenie1901]

It probably won't make much difference - the idea of the week to 10 days burst of pred is that that isn't long enough to seriously affect adrenal function unless repeated frequently, a one-off course won't. You MIGHT feel the change in dose - but it should resolve quickly too just as with any reduction step. It takes a long time for the entire adrenal feedback system to change either way.

[SnazzyD in reply to PMRpro]

It shouldn’t but I think in some of us it could. I meant it as a, if you find you feel more tired than you were don’t worry, it might be that, as we’re all different.

[PMRpro Ambassador in reply to SnazzyD]

Yes - I thought that was what you meant but I doubt that spreading the change over a week or so between 6 and 4mg would make a lot of difference after a few weeks do you?