adrenals not working

[pmac22]

After getting down to 3 mg of prednisone (still doing Actemra injections) my endo switched me to hydrocortisone for a couple of months. I got down to two 5mg tablets in AM and one 5mg tab in PM, the PM dose kept my blood pressure from going too low. Last month my endo did ACTH testing and said my Adrenal glands are not working and to increase hydrocortisone to 3tabs in am and 1 tab in Pm. I’m sure this explains why I have been feeling so poorly and the little increase helps. My endo said we would discuss everything at our appt in Sept. she also told me not to taper anymore, be sure to wear my adrenal insufficiency braclet and know sick day rules and carry emergency injection of hydrocortisone. I am doing as recommended. Has anyone else been through this and still been able to eventually taper and get off prednisone?

Peggy

[PMRpro Ambassador]

We would say that at 3mg pred it is very likely that you would get a result suggesting adrenals are not working. As I understand your post - this was only a few months ago so you have been on HC for a short time? We would also usually say that we expect it to take months, even up to a couple of years, for long term pred patients to regain decent adrenal function. Not because we are endocrinologists but because we have had that experience. SnazzyD has written a lot of replies telling of her slow return to decent adrenal function - it was over a year at least I think.

[pmac22 in reply to PMRpro]

Thank you, and thanks for the info on SnazzyD which is encouraging for me.

[SnazzyD in reply to pmac22]

It would be very informative to know whether you have no function or some. Some people’s posts have reported their doctor saying they are not working when what they meant was they were not working very well.

As PMRPro said, it did take me some time to be able to rely on my adrenal axis. At 4mg my Synacthen test wasn’t great and I sure felt like it. Just looking back, it took a year to get from 4mg to 1.5mg when I started to feel a lot better on a normal day. I still had to watch it because a crisis was still only around the corner if I did anything that was too taxing. My Endo’s never suggested Hydrocortisone and even suggested reducing at 1mg per month from 4mg. I declined in order to survive and have any kind of quality of life or function. I then spent a year under 1mg. I wasn’t out of the woods on zero Pred from Aug 2020 and it was well over a year before I didn’t think about it. I had a few crises and do wish I had been given an emergency kit.

I don’t know if that helps as all our paths are very different, but I’d say don’t give up hope yet if there is a flicker of life in those adrenals.

[pmac22 in reply to SnazzyD]

Thank you, I’m sure I will know more at my appt with endo next month. She is careful, as I went into a severe adrenal crisis during a diverticulitis attack over a year ago while in the ER, it was very scary, woke up in icu and it took two days to stabilize my Blood pressure.

Just a month or so before that all happened I had had the ACTH test which showed my adrenals were working so I’m not sure what is going on but I do trust my Endo so I will see what she says and let you know. I am hoping, of course, that my adrenals will sputter and work in the future. Right now I am having difficulty handling stress good and bad and it is taking a toll and I think it is effecting my heart arrhythmias also.

[PMRpro Ambassador in reply to pmac22]

The ACTH test shows the adrenals are CAPABLE of producing cortisol when given hefty kick with the synthetic ACTH - not that they are reliably doing so when required by your own biological set-up. Cortisol production is in response to a low level of corticosteroid in the blood at about midnight. It operates a switch that sets a whole cascade of things that ends up with cortisol being produced in the morning. And the other bit is in response to a severe stress on the body to help it deal with that stress - but in either case, just one connection being not quite right stops the chain reaction - like with a line of dominos or those rolling ball tower games.

[SnazzyD in reply to pmac22]

There is no reason not to trust her. I’d say, don’t give up hope yet. It can take an awfully long time. The main thing is that if they don’t recover you’ve still got some competent backup.

[montebello in reply to PMRpro]

From reading all the posts on this forum about adrenal insufficiency when PRED levels are 5 mg and below, I was expecting to experience the corresponding symptoms myself. But my rheumy told me that only 4 to 5 percent if long term PRED users experience adrenal fatigue when tapering occurs slowly. Does his comment sound correct?

[PMRpro Ambassador in reply to montebello]

Not entirely - a study was done at Leeds on longterm pred patients including PMR patients who were showing signs of struggling with reductions. Of course - some of the difficulty may have been PMR was alive and well. But I seem to remember the figure being more like well over 50% of those patients showed AI. And another of course - it was a skewed population, over half of people who find tapering difficult have AI so maybe that is 5% of longterm pred patients.

Though adrenal fatigue is a meaningless term - the adrenals don't get tired from working hard which is what it is used to express by the people who bang on about it. But that is another point.

[piglette]

Is your endocrinologist saying you will never have any adrenal function (which I am not sure he can) or it is just because the tablets are causing the problem currently?

[pmac22 in reply to piglette]

No she did not and said we would discuss the results at our next appts She did say they were not working now. I was just inquiring about others that have experienced this.

[piglette in reply to pmac22]

I have had a lot of problems with my adrenals not wanting to wake up, I think a lot of us do. Sometimes doctors seem to give patients the impression that a test showing adrenals not working means that they will never work, which in our situation is normally not the case.

[cmToddy]

I had to rush from 2mg Pred to zero in 2 mths and I felt dreadful. After 2 weeks at zero I had to go to A&E for the drip treatment . I was on the floor but after about 2 weeks on Hydrocortisone I started picking up. I have been on Hydrocortisone for 3.5 mths and have never felt better. I see the Endo next week and keeping my fingers xd she tells me I can reduce eventually. Keep positive it will all get better.

[PMRpro Ambassador in reply to cmToddy]

Why did you have to "rush to zero"? It could have killed you.

[cmToddy in reply to PMRpro]

It was suspected I had Rheumatoid Arthritis and my consultant didn’t want me to have tests whilst on Pred. As it happened I have OA in my hands also Carpel Tunnel.

[piglette in reply to cmToddy]

So your consultant would prefer to put your life in danger rather than allowing you to reduce slowly. I am not sure I would go near that consultant!

[PMRpro Ambassador in reply to cmToddy]

Nice of him - as piglette says.