Here we go again

[Southmead]

Hello,

I have been struggling with the usual taper flare.Yesterday I took a 8.00AM blood test before any sustenance, as recommend. As I suspected my Cortisol level was low.

From a normal range of 8.0 -25 ug/dl my reading was 3.0. I have been tapering from 10mg Pred currently down to 6.5mg. I'm awaiting my doctors response, (they email you the results straight away here in the US) in the meantime, I'm pondering whether to increase Pred back up again, or persevere. I'm beginning to think I don't seem to suffer any, or little discomfort on 10mg pred, as that seems to be the optimum number for a normal life. It's a question of stick or twist.

I realize my learned fellow sufferers on here are not doctors, but what would you do?

Thank You

[SnazzyD]

Depending how long you’ve been at 10mg and now down at 6.5mg, I’m not surprised your cortisol is low, as 6.5mg is plenty to suppress the adrenal gland function. If you are feeling a bit unwell at this point, it would be expected. PMR is another issue though. How are you with that?

[Southmead in reply to SnazzyD]

The main symptoms of PMR are not too bad, beyond the usual stiffness of joints, but nothing like when I was first diagnosed 10 years ago now, not that I'm counting The 5mg barrier as always seems to the be the key, or below the big hurdle.

Thank You.

[PMRpro Ambassador]

You have a low cortisol level because 6,5mg is sufficienct to suppress natural production of cortisol. The pred you are taking supplements the low cortisol so you are OK. The cortisol will only get higher if you cut the pred contribution over a long time - if you increase the pred, that will continue to suppress the production of cortisol.

At this stage your cortisol level is relatively unimportant - only below a pred dose of 5mg is it likely to start to go up to compensate for the lowering pred dose.

[Southmead in reply to PMRpro]

Thank you, with that in mind, I will just soldier on and continue the taper, thanks again!

[SnazzyD in reply to Southmead]

But only if your PMR is controlled and not beginning to bubble up again. Regaining cortisol function is secondary to controlling the PMR.

[PMRpro Ambassador in reply to Southmead]

As Snazzy says - only as far as the PMR allows. And if the adrenal function isn't keeping up - slow down.

[piglette]

I am surprised your doctor even bothered to test your cortisol level at 6.5mg, it sounds like a waste of monety to me.

[Southmead in reply to piglette]

It didn't cost me anything, my medical provider is a hospital as well, just a matter of going down a few floors to the lab, they take the blood, and you get results often on the same day.

[PMRpro Ambassador in reply to Southmead]

SOMEONE has to cover the cost.

[Southmead in reply to PMRpro]

It’s part of the services offered by your medical provider, they have a fully staffed laboratory in-house section. They have to pay them whether they are busy or not. 6 people at reception processing lab orders, and another 6 or more staff taking the blood samples. It’s a very efficient system. The cortisol test was the last one, as all the other test showed normal. I’m very grateful for their thoroughness.

[Southmead in reply to Southmead]

I should add that part is very efficient, however it comes to a grinding halt when my doctor views the low Cortisol results and doesn’t seem to really know what I can do about it, then silence. Well documented on here, GPs it seems no very little about PMR..

[Hidden]

i had a bad couple of weeks dropping from 5 to 4. i went back up to 5 and feel soooo much better. 10 is rather high and my rheumy said not to go above that. long term issues are a big concern. i don't think you should suffer too much but only you can be the judge of that

[Southmead in reply to Hidden]

Thank you, it really is such a difficult balancing act that doesn’t seem have an apparent solution..