Following on from synacthen test.....

[CygnusX1]

....and feeling pathetic at the hospital. Thank you for all your replies.

On to my next question -

Prior to the synacthen test I got down to 5mg pred but the last 3 weeks I had been feeling as though 5mg wasn't enough. I'd had several bouts of S&D, also fatigued by the heat..I thought it may have been adrenal insufficiency rather than a need to increase the pred. But I started to feel those oh so familiar aches, but didn't want to increase the pred as I wanted to get the synacthen test done.

Synacthen test came back at 315 and I'm now awaiting appointments with endo team.

In the meantime I'm doing sick day rules for 10 days at 10mg pred and feeling much better by day 3.

Now onto the question...

Should I drop back to 6mg while I await Endo and see if it helps with the aches, stiffness, fatigue?

Thank you, all advice is appreciated and taken on board.

[CygnusX1]

Apologies...forgot to add that my ESR was 55 and CRP 22

[DorsetLady PMRGCAuk volunteer]

Do you mean you followed SDR or the flare protocol ? No matter really if it seems to be sorting things out. Although you had S&D, which may well have been adrenals or a virus, as you say obviously 5mg was borderline for you, so yes back to 6mg.

The raised markers may be due to PMR flaring or a virus [if that’s what it was ]… you may never know.

[CygnusX1 in reply to DorsetLady]

Thank you DorsetLady. I didn't think it was a virus as it was 4 full days of D, then around 3 days off, and repeat 3 further times. I followed SDR. Thank you for confirming my thoughts of 6mg.

We never stop learning on this journey do we?

[PMRpro Ambassador]

Sounds remarkably like a flare, let in by the period of lower pred. Those markers are pretty high really.

It also sounds as if your adrenal glands are actually capable of producing cortisol - though there should be two results for a meaningful test, the baseline cortisol level in the first blood test and the response in the second. If the figure you have quoted is the second, it is still suboptimal.

[CygnusX1 in reply to PMRpro]

Thank you PMRpro. I feel reassured that the adrenals are capable of doing "something". My ESR has never been good - the best was 34, worst 74. CRP best has been 5 and worst is last time at 22. I don't know if there's any impact on these due to the smouldering Myeloma but no one seems concerned when I ask that question.

I guess for me the priority has to be remaining stable with SM and I am. However the bone marrow plasma test was bang on the line between MGUS and SM. They ran the test twice and had to give that diagnosis as that's what the numbers dictated.

I'm feeling like the 5mg increase is doing some good and I'm hopeful that 6mg is enough to mop up the ongoing daily inflammation. Also hopeful that the 6mg is low enough to not halt the nudging awake of the pesky adrenals!