When tapering at low doses how long to go back up/stay up if necessary

[Karenjaninaz]

I am at 4.5 mgm prednisone . Diagnoses in 2015. While tapering to 4.25 felt I had not enough energy to do normal things. Decided I need to up it a little but how much and for how long. I do not have PMR pains at all just general blahs and some morning g stiffness. Recent stress with husbands surgery I did: one day added 2mg, next day 1 mgm, and last day 1/2 mgm not cumulative. I was able to do a lot more.

Put another way how long to stay at the more comfortable higher dose.? Day, weeks or months. I keep hearing “a few”.

Oknaz(Karenjaninaz on Patient forum)

[SnazzyD]

This is a tricky dose range and I found there was so much playing it by ear, as they say. Your adrenal system really needs to work now to make up the lack of cortisone in the pills. I found, as do others, that it doesn’t usually happen smoothly. Instead you have good times and bad times throughout the day. On the whole though I was unable to cope with much at all without feeling weak and empty, shakey and emotional with the worst time at 5pm. I needed more sleep too. I had a Synacthen test at 4mg and it showed my adrenal glands could work but my morning blood cortisol level was not very good. This is because the adrenal glands usually work then stop, work again then stop or they do work a bit but can’t suddenly up the levels on demand. My endocrinologist said that the only way to get them going is to keep reducing. However, this is easier said than done because you have to strike a balance between total collapse and functioning, which isn’t easy at times. Done to 3mg I reduced 0.5mg every 6-8 weeks and from then on 0.5mg every 10-14 weeks; that was quite enough for me. For months I felt generally unwell but then it slowly cleared. This is when you can be really caught out because you think you’re fine then bang, you feel awful because you’ve done something out of the ordinary.

If I ever had to up the dose my a mg or two it was just for the day or duration of the extra stress, but I tried to do this a little as possible. I think I did it for a very long car journey, the flu, Covid and a very emotional few days. I had a bit of a collapse after doing a walk in pain up a hill (long story) but 2mg and going to bed was al it needed.

It is tempting to keep popping an extra to get through the day, but not a good long term policy in think, as it can become easier to pop a pill instead of moderating one’s activity. There are without a doubt times when it just isn’t right and a pause in reduction is needed, and then a retry is more successful. It isn’t easy!

[Karenjaninaz in reply to SnazzyD]

Hi Snazzy, thanks for your response. In all this time I only went up for a few days twice; this last time with my husband’s operation with all the visits, driving and duties and a funeral 2 years ago. My reductions are in 1/4 nvm decrements. I am 78 with osteoporosis and worry I get too pooped to exercise.

[SnazzyD in reply to Karenjaninaz]

It is such a difficult balance at times. My exercise tolerance went right off over about six months and I was only 55/56. It does come but it can feel like a rocky path to get there at a time when one feels it ought to be getting easier.

[Theziggy in reply to SnazzyD]

You have a endocrinologist !! Not so lucky in the UK

[SnazzyD in reply to Theziggy]

I am in the UK. My lovely GP referred me months in advance assuming that if I kept on reducing at my rate I’d be at about the right dose by then.

[PMRpro Ambassador]

Welcome over here - at least we are told about new posts!!

Just to say I have nothing to add to Snazzy's comments. Except that theoretically 5mg is low enough to poke adrenal function into life and one excellent rheumy likes to keep patients at 5mg for up to 9 months, finding that helps a lot with the rest of the journey.

[Louisa1840]

This is all very helpful for me because I am at 6 mgs (three years plus of PMR). I am SO tired and achy but am reluctant to up my dose because I want those darned adrenal glands to wake up! I feel about 101 .......... The support from this forum is invaluable.

[Roxyart]

I would leave it up to your doctor to decide if you are tapering but you're not having any pain then I would stay at the tapered if you start feeling pain then up it a little bit right now I'm at three and three quarters but it took me awhile to get there and stress will always trigger your symptoms