Tapering of prednisolone

[CavalierKC3]

now down to 2 mg from starting on 50 Aug 22. Have followed Dr Muktyar . Is it normal to feel so lethargic now on such low dose. Barely have energy, strength to move, do anything. Pain in left leg still there mornings especially. I felt a lot brighter when I was taking higher doses but it caused everything under the sun to go wrong with body

[DorsetLady PMRGCAuk volunteer]

Lethargy -definitely adrenals struggling -see this -

healthunlocked.com/pmrgcauk...

Not sure about leg..unless that how “your” GCA manifests itself… perhaps you should get it checked out.

[PMRpro Ambassador]

At this level the adrenal function is struggling to keep up with the speed at which you have tapered. We know Muktyar believes that fixed rate tapering works for all patients - but adrenal function is a separate problem to the GCA or PMR. Has he checked your adrenal function at any point?

[CavalierKC3 in reply to PMRpro]

not that I know of. Is it a blood test & what’s it called

[PMRpro Ambassador in reply to CavalierKC3]

The basic test is a basal cortisol blood test and just doing that can provide a lot of information about whether your adrenal function has started to adjust. It is possible your GP will agree to do it since you are so exhausted - and possibly easier to arrange than persuading CM to do it.

It requires a cortisol estimation done on a blood sample taken at between 9am and 1pm after not taking your pred dose for that morning, you can take it as soon as the blood sample is taken. If the level is under 100 you definitely have adrenal insufficiency, if it is over 450 your adrenal function is normal. If it is inbetween, the level is a guide as to how much the adrenals are capable of at this point while still on a low dose of pred but to get more information you would need to have a synacthen test done to look at the adrenal reserves available in an emergency. That is done in a hospital day clinic - a sample of blood is taken to get the basal cortisol level and then synthetic ACTH injected before another blood sample is taken after half an hour to see how the adrenals have reacted - they should produce a spike of cortisol in response.

Since you have got to 2mg pred it might be worth doing though even that is enough to suppress production of cortisol to some extent. Some doctors insist that it is pointless doing the test until you are off pred altogether. Personally I think not looking at all is a bit risky since if the adrenal function is really poor, continuing to reduce the pred dose to zero can put you at risk of an adrenal crisis if you experience a stressful situation or try to do too much.

Since you feel so exhausted and unwell, even though it is fairly obvious why, I think a discussion with your GP might be useful.

[piglette]

You have been hit by the ‘deathly fatigue’ caused by the adrenals.