Fatigue and cortisol test

[Vawils]

I have been dealing with PMR and related symptoms for 10 years and still been unable to reduce to 0 prednisone. For the past 3 years i have been able to reduce to 2 mg/day multiple times but have also been forced to increase back to 3-5 mg/day for periods when symptoms have recurred, mainly the common muscle aches but also intense fatigue and brain fogginess/lethargy. I am currently again at 2 mg day but going through another bout of extreme fatigue which came on suddenly in the last couple days. I had a similar episode of this fatigue back in December with a similar reduction attempt to 2 mg. My inflammation markers have been normal in recent tests and so my rheumatologist has been encouraging further attempts at reduction.

My question is whether a cortisol test might be helpful to deciphering what is going on at these low doses of prednosne. I note others have had cortisol tested when they are at low doses of prednisone. In 2015 my endocrinologist suggested a synacthen test which I believe is the same as a cortisol test (?) but at that time I was taking over 10 mg prednisone, and it was considered not recommended at that dose.

Thanks for any thoughts before I talk to my rheumatologist or endocrinologist.

,

[DorsetLady PMRGCAuk volunteer]

Sounds as if main issues are caused by adrenals struggling - so yes a cortisol test would be sensible.. not a definitive answer as it will only tell if adrenals are capable of working not how well they are.. but it’s a start point.

See this info on adrenals

healthunlocked.com/pmrgcauk...

As you correctly said, no point in one when you were on 10mg, but it is now..

[Vawils in reply to DorsetLady]

Thank you very much for your continued expertise and advice as I also responded to PMRpro. Thanks also for your link to the paper on adrenals with very good information. I sent a message to my rheumatologist about my concerns with my onsets with low dose of steroids of increased muscle aches and extreme fatigue and possibility of a cortisol assessment. She suggested that based on knowledge of chronic steroid use, that testing of my adrenal axis (cortisol) will likely show suppression and the treatment of adrenal insuffiency is steroids, which I am on already, so she suggested to save time/money to differ the cortisol testing with no further tapering for now and staying on 2 - 3 mg/day of prednisone. Hopefully my current fatigue flare will further subside. I am not sure rheumatologists understand how extreme the fatigue can be. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Vawils]

Not sure rhemies do understand about fatigue nor fully about adrenals. Yes they will be suppressed, but the test can show if they are capable of working, albeit not necessarily how well. It’s an idea to stay at current level for some time to enable them to continue to try, but you do need to continue to reduce Pred [provided no flare of your PMR] in time, slowly and small steps so they will recover. Which for the vast majority of people they do.

[PMRpro Ambassador]

I have had PMR for 20 years and been on pred for 15 of them. Even with Actemra I cannot get below 7mg - at 6mg the bicep tendinitis that makes doing any thing with hands and harms extremely painful returns and while I can just manage the adrenal-related symptoms at 6mg, at 5mg I cannot function. Since I am stable at 2-weekly Actemra and 7mg my highly experience rheumy is perfectly happy. There is obviously some inflammation not due to the IL-6 cytokine that requires the pred - but 7mg is infinitely preferable to the 19mg I needed before to function! He and I would be ecstatic if I could get to 2mg!

As DL says, yes, makes perfect sense now to have a cortisol assessment. Initially, a simple blood test for a basal cortisol level is an easy start. Blood is taken between 9am and 1pm after not having taken that day's pred so so you haven't taken pred for at least 24 hours prior to the blood sample being taken. If it is under 100, definitely adrenal insufficiency, over 450 is normal, inbetween requires further assessment with a synacthen test.

At this stage it is a balance between the needs of PMR - it sounds as if 2mg is enough for that - but perhaps more significant is your safety in terms of adrenal function.

[Vawils in reply to PMRpro]

Thank you very much for your continued expertise and advice. I sent a message to my rheumatologist about my concerns with my onsets with low dose of steroids of increased muscle aches and extreme fatigue and possibility of a cortisol assessment. She suggested that based on knowledge of chronic steroid use, that testing of my adrenal axis (cortisol) will likely show suppression and the treatment of adrenal insuffiency is steroids, which I am on already, so she suggested to save time/money to differ the cortisol testing with no further tapering for now and staying on 2 - 3 mg/day of prednisone. Hopefully my current fatigue flare will further subside. I am not sure rheumatologists understand how extreme the fatigue can be. Thanks again.

[PMRpro Ambassador in reply to Vawils]

Nor do they understand the use of cortisol levels while the patient is at 2-3mg. It at least gives a ballpark of whether the patient is safe to push through at a low level. Others have normal cortisol levels - you have to buy the ticket to know ...