Adrenal Glands

[Xanthe12345]

I have been on Pred for a year now. Can someone please advise me what happens when your adrenal glands kick back in. I have been hypothyroid for 30 years and have blocked arteries and I am nedication for bot. Hoping to get Preds down to 7.5 this week many Thanks

[PMRpro Ambassador]

Not a lot when they kick back in - you are simply able to reduce your pred dose slowly without any effects like increasing fatigue. If they don't then you might experience the same sort of symptoms as in Addison's disease.

[Freddie01 in reply to PMRpro]

Hi PMRpro I had a test to check if my Adrenal Glands are working as I have chronic fatigue and it has been ungoing for several months, the test was done 3rd October today I received a call from the secretary of the Consultant who is head of the medical team. I did not see him on my previous visit, the secretary asked if I could attend an appointment with the consultant next Monday which in my mind indicates the test has shown something. I am currently on Steriods 4 mg one day and 3 the next day I am certainly not pain free as some days are worse than others any advice would be appreciated 😟

[PMRpro Ambassador in reply to Freddie01]

Nothing to say really until you know what they have found - or not!

Certainly, you are at a dose where your adrenal glands should be starting to wake up and contribute to the corticosteroid (cortisol) level in the body, which is essential to keep your body functioning well. If they aren't for whatever reason - and there are more than one - then you will feel the effects, primarily as fatigue. But if you have PMR symptoms anyway - you probably need a bit more. So if they HAVE decided it is adrenal insufficiency and decide to give you a bit more pred it would sort 2 problems out.

It seems to depend on the doctor - some are perfectly happy to leave patients on pred, especially where there is some adrenal function, just not quite enough. Others like to use hydrocortisone (HC) taken 2 or 3 times a day. It is also a corticosteroid but it may have different side effects. One lady on the forum has adrenal insufficiency and the consultant, without actually seeing her, just the test results, ordered a switch to HC which has caused her some unpleasant side effects so she has asked to go back to pred which caused her no problems. Another has been left on 5mg of pred and has managed well.

[Freddie01 in reply to PMRpro]

Thanks for responding I will keep you posted. Having GCA diagnosed 12 mths ago I have tapered down from 60mg to my current dose but if I have to increase the preds then that is what I will do.

[PMRpro Ambassador in reply to Freddie01]

60 to under 5mg in 12 months is pretty fast!!!!

[Freddie01 in reply to PMRpro]

Hi again, I saw the consultant yesterday and he advised the test results showed my adrenal glands are not working, he gave me 2 options I can increase the Steriods to a level so they can do the work for them or I can continue with the reduction which from tomorrow will be 4 one day and 2 the next, he stressed I need to be extra careful if I develope flu or gastro symptons in which case I need to contact his department ASAP as it could be serious. I have decided to do this for the month and hope the glands may waken up soon.

[HeronNS in reply to Freddie01]

Well, Freddie, you are braver than I would be. Personally I'd consider staying at 5 mg for longer. That's a dose where side effects are minimal and it's also a dose which will give you some quality of life while you wait for the adrenal glands to pick up the pace. It's already below the normal daily level of cortisol so the adrenal glands should begin to respond, if they're going to. If they are not responding at all, continuing your taper could lead you to a full blown Addison's crisis.

[PMRpro Ambassador in reply to Freddie01]

Like Heron I think that is a bit brave!!! Or is foolhardy the word I want? One top rheumy likes to keep his patients at 5mg for up to 9 months to allow potential recovery of adrenal function. That is low enough to stimulate the adrenal function but keep you reasonably safe.

If I were you, I would also like to see an endocrinologist to discuss the options. One lady on the forum was forced to switch from pred to hydrocortisone which was something of a disaster - but the endocrinologist was using normal practice. She's been allowed to switch back to pred which suits her much better in terms of side effects.

[Freddie01 in reply to PMRpro]

Hi PMRpro It was the consultant r from the Endocrinology department who seen me on Monday and those were the 2 options he gave me, he said given my ESR was 5 and i was managing on the reduced dose it should be ok to stick to the plan but stressed if for any reason i felt unwell then i should make contact directly. I have an appointment with my Rheumy later this month so will take each day as it comes. Rest assured i have no problems increasing the preds if i need them. Will keep you posted

[PMRpro Ambassador in reply to Freddie01]

That's OK then - what a sensible endo!!!!!