Tapering tiredness

[Suzan62]

I’ve been on pred for about 6 years and down to 1.5 at the moment. Struggling a bit but hoping things will settle and I won’t have to increase again. I’ve never really suffered with fatigue but just lately I’m feeling tired quite a lot and feeling the need to rest after doing anything energetic. I’ve never been a great sleeper so not sure how much of it is down to that but I’m guessing this is also a symptom of being on a low dose of pred?

[piglette]

Sounds like the adrenals are still feeling a bit tired and are still waking up. It can take up to a year after stopping the steroids for them to fully wake up.

[Suzan62 in reply to piglette]

Hi there, yes that’s what I thought.

[SheffieldJane]

Have you had your Adrenals tested? It may be wise to see how they are doing with a simple morning cortisol test that I think your GP would agree to do. Just to be on the safe side. Or even a Synacthen Test at an Endocrine unit. My tests were normal recently but I was still instructed to do the sick day rules if I become ill. ( Outlined in FAQs, if you are unsure). Basically take an extra 5 mgs for a week or so if you have a significant acute illness.

[Suzan62 in reply to SheffieldJane]

Hi Jane, no I haven’t had any tests. I’ve read about people having their adrenals tested but can’t see anything about what happens if they’re not functioning properly. If it’s just a case that they’re still waking up would the test come back normal?

[SheffieldJane in reply to Suzan62]

I failed a test in the past when my diagnosis was PMR only. The Endocrinologist took me very seriously and became my Endocrinologist. He gave me an emergency hydrocortisone injection kit. He also advised me to move on to Hydrocortisone instead of Pred because it acts like our own cortisol production and is therefore more stimulating to the adrenal glands. I decided to remain on Pred as my disease was still active and unbeknown to me, was morphing into GCA. The fatigue is not only caused by the Adrenal System and can be the disease itself. We all seem to experience it. I am back down at the low doses and have just had a good result from a Synacthen Test. I still have to reduce Pred slowly, observe the sick day rules and be aware of the risk of an adrenal crisis. Having the Endocrinologist just feels like a safety net.

[DorsetLady PMRGCAuk volunteer]

Adrenals struggling - maybe have a look at this for more info -

healthunlocked.com/pmrgcauk...

[Suzan62]

Thank you, that’s very helpful.

[PMRpro Ambassador]

Adrenals lagging behind the taper in pred dose by the sound of things. I wouldn't go any lower for the moment - the only way to stimulate better function is to stick at a low dose of pred for long enough. And it can take a long time ...

If they eventually don't get back to functioning properly, then you need replacement therapy - either pred or hydrocortisone as pills.

[Suzan62]

Thank you. I won’t go any lower. I was on 1mg but have gone back to 1.5 as my shoulder hurts a bit and legs sometimes when climbing stairs. Not sure it’s enough now and thinking of going back to 2mg but I’ll see how it goes. Not sure whether I need a test at this stage or wait and see if adrenals eventually pick up on their own accord. Don’t have any other symptoms at the moment. I get heart flutters when I’m anxious and I get down sometimes but not sure that’s related.

[PMRpro Ambassador in reply to Suzan62]

They could be - especially if they were less of a problem at higher doses of pred. All the test tells you is whether they CAN work, not whether they ARE working reliably day by day and just having a basal cortisol level measured (blood sample at between 9am and lunchtime) will indicate if it is worth having a full synacthen test. There isn't anything that can be done to nudge them into action except sticking at a low dose of pred. PMR is all about patience.

[Suzan62]

So what results from the first test would indicate I might need a synacthen test and what would that show?

[PMRpro Ambassador in reply to Suzan62]

Under 100 for the basal cortisol is definitely adrenal insufficiency and above about 400 is near enough normal. Between they recommend a synacthen test - but that is for query adrenal insufficiency in otherwise healthy patients, If you are on pred it is bound to introduce a degree of suppression of adrenal production of cortisol so what the result is compared to the dose of pred is also significant.