Just checking

[Evercurious]

Have had PMR for a year and a half. Recently tried a taper from 8 mg to7.5. Started just after Christmas, after a six week battle with a cough and while feeling more tired than usual. A wee bit of pain came back in shoulders and hip, and an overpowering malaise took hold, although I really wasn’t aware to what extent - UNTIL I decided to go up to 10 mg for a day or two. I can’t believe how much more alive I feel! Had no motivation to do anything and now, today, I tackled all sorts of things.

My question to you - should I stay at 10 mg for awhile or go back to 8 mg in a day or two, as I planned.

My doc put me on alendronate after my last bone density scan showed large percentage of change, so I am more eager than ever to find success tapering. (She said I could quit it after I get off pred.)

Thanks for any input, I sure appreciate it😊

[Yellowbluebell]

Hi i personally would stay at 10mg for another a few days to make sure the pain had gone and then drop to 8mg and see how things go. I wouldn't rush to taper from 8mg for at least a couple of weeks. Others will be along withl more advice when the uk wakes up. Good luck. YBB

[Evercurious in reply to Yellowbluebell]

Thanks, YBB. Just don't want to fall into the” pit of despair” again😊

[piglette]

It is quite possible you had hit the point at 7.5mg where your adrenals needed to start leaping into action, at least dragging themselves into action. The deathly fatigue may have started taking a hold.

[Evercurious in reply to piglette]

I had wondered if that was the case, piglette, but thought 7.5 a bit high for that to start.

[DorsetLady PMRGCAuk volunteer in reply to Evercurious]

Not necessarily- that’s the figure we quote, but it’s an average. Normal equivalent natural production of cortisol can range between 5-10mg - so maybe you’re one if those who’s natural production is on the higher side.

As for reducing from 10mg, once you’ve really stabilised (and not doing too much) maybe try stepping down to 9mg for a week, then 8mg for at least 2-3 weeks before attempting your tapering proper again. But make sure you are over the cough before you start.

[Evercurious in reply to DorsetLady]

Thanks for the wisdom, Dorset Lady. I will do so.🙏

[Constance13]

"I tackled all sorts of things"!!!! Big mistake, you should have rested to enable your body to adjust.

[Evercurious in reply to Constance13]

They were not physically demanding things - I was just so happy to have motivation back in my life!

Thanks for your reply, Constance.

[PMRpro Ambassador]

It really isn't ever a good idea to try to reduce the dose while unwell for whatever reason. But if the 2 mg made such a difference - are you sure you want to go straight back to 8mg?

[Evercurious in reply to PMRpro]

No, I’m not. That is the problem. I would stay here forever if I wasn’t worried about side effects of medications.

I’m also wondering - Is the malaise something one must go through when entering the “ wake up adrenals!” stage?

Thanks for your reply🙂

[PMRpro Ambassador in reply to Evercurious]

I live for now - I stay at the dose that works. What might happen in 20 years is something else. I haven't been below 10mg for a lot of my journey. But 9mg might be enough????

The malaise? I don't know - like everything else everyone is different.