adrenal insufficiency

[Luciejane]

hi I have a question about changing medication. I have GCA (3 years) but doing well and have reduced pred to 3mg. My endocrinologist wants to change the prednisilone to cortisone twice a day, 10mg am and 5mg pm in order to help kick start the adrenals. I've had the short Synacthen test twice now and I'm still adrenal insufficient. If I change the meds will I be in danger of a flare? Has anyone on here done this and how did you feel on the cortisone. Currently I get fatigued and have a lot of tingling in my face head hands and feet. 24/7 but worse when I'm fatigued. Otherwise I'm great and able to get on with life!

[DorsetLady PMRGCAuk volunteer]

No personal experience of hydrocortisone, but if you still have GCA it doesn't seem to control that as well as the Pred. But he's the expert in all thing adrenals, so you could try I guess.

My adrenals faffed about when I was reducing between 6mg to 3mg - very slowly, but then suddenly decided to get on with it.. so there is still time.

If you feel okay in yourself, i think I'd be inclined to say 'thanks, but no thanks' unless things alter.

Others with experience will be along with their experience.

[Luciejane in reply to DorsetLady]

thank you Dorset lady. Very helpful to know your adrenals eventually came through.

[DorsetLady PMRGCAuk volunteer in reply to Luciejane]

Yes they did… and absolutely fine now - had first replacement surgery less than 2 years after finishing Pred , and if they’d been struggling then I’m sure I would have known…

[Westie2023 in reply to DorsetLady]

I have a question for you. I am currently on 6 mg prednisone, starting on August 4 (tapering down from 60 in Oct 2023 for GCA). We are in the process of moving to another state to a senior apartment and also packing for a cruise next week planned a year ago. These past few days I feel flush sometimes and dizzy and lightheaded. Could this be a problem with the tapering and the adrenals? Should I be worried?

[DorsetLady PMRGCAuk volunteer in reply to Westie2023]

Does sound very adrenal-like… not worried no, but even with all that’s going on you probably do need to take as much rest as possible, another effect is fatigue. Also significantly slow down your tapering…that will help nudge the adrenals into working

[Westie2023 in reply to DorsetLady]

Is it still safe to go on my cruise? ( Boston, New York City, Newport Rhode Island, Halifax Nova Scotia, Quebec City, and final, Montreal ). So, no third world countries.

[PMRpro Ambassador in reply to Westie2023]

Why not? Loads of people on the forum go on cruises!

Usual warning about Covid on cruises though. But not any worse than going to the cinema or theatre or other gatherings with a lot of people at home.

[DorsetLady PMRGCAuk volunteer in reply to Westie2023]

Yes..l as PMRpro says, I’d be more worried about catching covid…

[PMRpro Ambassador in reply to Westie2023]

As DL says, not worried, it is a perfectly natural and expected result. With all that on your plate though - if you felt significantly better on your previous dose and this doesn't improve in the next week or two, it might be worth biting the bullet, going back to the previous dose until it is all done and dusted and then gently tapering back once life is a bit less hectic. You have done really well getting to 6mg in under a year - don't feel you MUST stick it out and spoil the cruise and struggle with the move. Moves are bad enough without pred!!!!

[PMRpro Ambassador]

Very much depends on whether or not the autoimmune part of the GCA is still active and creating inflammation. If it is, then that must be balanced against the need to encourage the adrenal function. HC rarely manages the inflammation as well as the equivalent dose of pred - for exactly the reason it is favoured for triggering adrenal production of cortisol: it is out of the system far more quickly. The endo is only interested in things endocrinological - probably has no idea about the rheumatological side of GCA!

A second factor is that it is still a corticosteroid and has similar adverse effects. Everyone is different in their response to steroids and some find HC thoroughly unpleasant - just as some find pred unpleasant - and find it affects them adversely. You only find out by trying so a discussion with the endo as to going back to pred if the HC shows its less helpful side may be a good idea.

[Luciejane in reply to PMRpro]

Thank you for your very helpful reply. Perhaps the phrase better the devil you know might be appropriate. My esr and CRP are currently normal but I've no idea if the GCA is still lurking. I check bloods every time I've completed a taper.

[PMRpro Ambassador in reply to Luciejane]

Pred is used in adrenal insufficiency too and here where GCA is in the mix, I'd want to stick with it,

[Luciejane in reply to PMRpro]

Yes I think I'm going to. I did suggest staying on it and trying a very slow taper to 2.5 and she said I could try but recommended hydrocortisone as a better option. She reminded me of the sick day rules and emphasised the dangers of being adrenal insufficient. Think I will let her know I've changed my mind and prefer to stay on pred. Thank you and also thank you DL x

[PMRpro Ambassador in reply to Luciejane]

If it weren't for the GCA complication she is right enough but ...

[Carrollee]

Twice before when I got down to 4mg I was put on hydrocortisone. Both times the pmr came back and I was eventually put back on higher dose pred and had to reduce again. As a medication I preferred how I felt on it but it didn’t control any pmr that was still lurking. I am at 4mg again now and pondering my next step. 🤔 all the best whatever you decide 🤗

Ps I also had GCA but it didn’t impact on that as it seemed to have gone into remission and has stayed that way.

[Luciejane in reply to Carrollee]

Thank you for your reply, I really appreciate your letting me know how it was for you. I would hate to have a flare as a consequence, so will probably not make the switch.