Advice on timing of lower doses

[olive2709]

I have been on 5/6mg this month as month has gone on finding big difference in energy levels between 5 and 6 days. Start on 5mg Thursday take pred about 9am with breakfast as not having to get up at 7am any more so eating later. On 5mg days go into sweat about 14 hours after taking pred any ideas

[DorsetLady PMRGCAuk volunteer]

Hi Olive,

Firstly would suggest you don't go to 5mg completely. If you're having trouble on the alternating days when you're taking the 5mg then it's obviously not quite enough, whereas the 6mg seems okay. As we're always saying even half a mg can make a difference.

Sensible thing would be to go back to 6mg for maybe a week or so, and then try again.

As you are alternating days I guess you're on the enteric tablets. Not sure exactly how you are tapering, are you going straight into one day old dose, one day new? If so, maybe you could try following, may give your body a bit more time to get used to lower dose - or do the DSNS taper -

1st week - Sun & Thurs new dose

2nd week - Sun, Tues & Thurs new dose

3rd week - Sun, Tues, Wed, Thurs new dose

4th week - Sun, Tues, Wed, Thurs & Sat new dose

5th week - all week new dose

if you have non coated tablets just try dropping by half a tablet at a time.

You are around a very problematic dose, so your body needs all the help it can get.

Good luck

[markbenjamin57 in reply to DorsetLady]

Well put DL, as always

[markbenjamin57]

Hello olive 2709

I can relate to trying to reduce at these levels of Preds, if only a seemingly 'small' reduction.

If it helps: I calculated a %-wise dosage reduction from 6 to 5 mgpd (approximately 16%) and this is far greater than the recommended 10% maximum of the previous periodic dosage at any time.

You don't say how, exactly, you are doing the 6 to 5 'dance' (!). But it might be that, if you're alternating 6 / 5 days, your adrenals are protesting loudly at the sudden 'jolt'.

Are you familiar with / using the DSNS (or an equivalent) where any reduction is incrementally 'phased' by an 'asymmetric' reduction in daily dosages and / or splitting pills to make it smoother? (as per DorsetLady's reply..)

MB

[olive2709 in reply to markbenjamin57]

Had my GCA for 3years New rummy has got me from 10mg to this level in12 months got me to 7/6 by November then left me at this dose till end March his words Winter not a good time to reduce weather not nice just look after your self. Then 6mg daily April then 5/6 May . Stress has been high this year hubby going through a lot all shorted ,sleep apnea final diagnosis picked up machine last Friday .both of us starting to sleep better. Couple of trips to clinic to check machine doing its job in June so have decided that from 1st July we are taking May (Motor home) for a long holiday 20day minimum

[PMRpro Ambassador]

These are very possibly signs that your body isn't keeping up with the production of top-up cortisol now you are below 7mg. I'm at 7 and 6mg alternating and notice a big difference between the two days as well. I feel good at 7mg, far more fatigued at 6mg. I managed a few weeks at 6mg every day - and just got more and more tired. So I have gone back to alternating 6 and 7 in the hope that will be enough to tickle the adrenal glands into more enthusiastic production of cortisol! 18 months ago I was at 5mg perfectly happily before a flare - so I do hope my adrenal function hasn't deteriorated in the time!

I wouldn't go to every day 5mg just yet and Mark mentioned the Dead Slow approach:

healthunlocked.com/pmrgcauk...

[markbenjamin57 in reply to PMRpro]

Yes PMRpro

And.. (!) take into account the other variables like stress levels, more physical exertion than usual etc, which can also influence the effectiveness of even the 'best' tapering plan. I know from painful experience...

MB

[Retailmonkey]

I'm also at that 6/5 level at the moment after a very smooth path down from 40 last August (with the occasional pause where circumstances suggested I might be putting a strain on the system. Despite consultant upping my Methatraxate to 25 mg and suggesting I dropped 1 mg every 3 weeks in one go starting at 7 I have taken a little more time and slowly increased the number of days on the lower dose. Several times have had to pause for an extra couple of days as felt fatigued. As long as I listen carefully to what my body is saying (which is always the advice on the forum) I seem to be making progress. Agile management (very much the in term in my profession at the moment!!) seems to be the right way to navigate the adrenaline switch on. Rigid timetables whilst convenient for the consultants are not necessarily how are bodies react and it our immune system we have to manage

[PMRandRA]

Yep, about right. I pour on the change days whether up or down,