Adrenal Insufficiency : Have been reading posts and... - PMRGCAuk

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Adrenal Insufficiency

Hollybee21 profile image

Have been reading posts and info on Adrenal Insufficiency, I was diagnosed 4-5 years ago and was told to stay on 8mgs for the rest of my life. Is there any chance I could still come off Pred and get my adrenals working after this length of time?

55 Replies
PMRpro profile image
PMRproAmbassador

4-5 years seems a bit early to decide your adrenal function won't return - and 8mg seems a rather high replacement dose if that is what they think. Most people start with the equivalent of 5mg pred and loads of people on the forum needed IRO 5 years to get off pred but did so successfully. I know of a few people on pred for 10+ years who were able to stop pred and didn't require replacement therapy in the form of hydrocortisone either.

From here on there are 2 considerations - the dose you need for PMR management and how the adrenals react to less pred. But it would be silly not to continue to edge down the dose - 1/2mg at a time and slowly and see what happens. There is no way to know how the adrenals are doing until under 5mg pred anyway.

I have a thing against doctors who profess to have a crystal ball ...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

I was on Pred for 4.5 yrs...starting at high doses...cumulative dose around 20g (19,987mg).. been off for same amount of time...my adrenals are fine!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Um - 2 KG??????

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Braindead, sorry! 20g...that would going some 🤦‍♀️

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

2 kg of pred might have that effect ;)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

True...but even so, it should be well dispersed by now...so no real excuse!

Sorry to be picky but 2g cannot be right either. 15mg for 3 months is surely 1.3g for example and I know you’d been on more than that for a lot longer.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to DogAgilityObsessed

Glad someone’s awake, should read 20g! Thks. 🌸 and I said it had no affect….obviously wrong….

Edited.

Fireleigh profile image
Fireleigh in reply to DorsetLady

That’s encouraging! I’m looking forward to the day. Thank you for posting

From my observation there seems to be three camps of docs. The first assume the adrenal function will be lost and don’t even try to get the patient self sufficient again. The second don’t think there should be an issue and think it will be seamless as the dose drops. The third are realistic and realise it can take time and allow the dose to drop to challenge the glands. Sometimes there is a mix of the three. So you get situations like testing cortisol when the Pred is still too high, getting a low result then saying it is doomed. Reducing too fast such that the patient suffers from insufficiency can be seen as evidence it’s doomed or ignored or the patient is told they are “‘addicted’”. A good doc slows up and plays the wait and see game for a bit longer. As to when to call time and decide to go for supplemental cortisol is probably a bit of an art.

If you’ve not got past 8mg for any length of time nobody can tell yet and for me 8mg feels a bit high for permanent dosing and unwanted Pred effects were still around when I was at that level. If they’ve given up on your adrenal function, surely there’s nothing to loose by reducing slowly by 0.5mg through 3 month intervals with their agreement. I didn’t feel well all of the time I reduced through 8mg to 5mg, feeling achey, deeply tired and emotional . I do wonder sometimes if PMR people think it’s a flare. Things really looked up at 3mg. Still now 10 months after stopping Pred I can still overshoot my adrenal glands’ ability to cope occasionally so I pop a 1mg or perhaps 2mg, job done. For info I started on 60mg 3.5 years before stopping.

Hollybee21 profile image
Hollybee21 in reply to SnazzyD

Thanks for the info. Having a raft of blood tests tomorrow. I think I will show my Doctor your message and see what he tells me. Thank you 🤞

SnazzyD profile image
SnazzyD in reply to Hollybee21

Just for info, my endocrinologist said he doesn’t do any tests until under 5mg because above that the adrenal glands may still be affected and not give a true reflection of their potential. I had my Synacthen test at 4mg and 1.5mg.

Hollybee21 profile image
Hollybee21 in reply to SnazzyD

Thank you. I had mine at 8 mg😫

PMRpro profile image
PMRproAmbassador in reply to Hollybee21

The results won't tell anyone anything about whether you adrenal function will return - it won't have yet.

I had mine at equivalent of 3mg pred(but took hydrocortisone for a few weeks before test) Diagnosed with AI & endocrinologist stated I should take no lower than 3.5 mg pred indefinitely. I manage well in that dose generally speaking. At some point will be retested. I had got down to 2.5mg before the test but struggling after 8 years.

tangocharlie profile image
tangocharlie in reply to SnazzyD

Same here, endocrinologist told my rheumatologist off for sending me along to them while still on over 5mg pred about 5 years ago. It was the start of her learning all about adrenal problems I think and now she's one of the experts! Even then, the synacthen test doesn't tell you how well the adrenals are working, only if they are capable of working. The only real test is the 9am cortisol test, and that is very unreliable and difficult to interpret, even for endocrinologists.

Viv54 profile image
Viv54 in reply to SnazzyD

Thanks SnazzyD gives hope to us that are really low and wondering if there is an end to this !s

SnazzyD profile image
SnazzyD in reply to Viv54

It really can feel like it. After reducing relatively easily from higher doses I wasn’t prepared for hitting the wall under 10mg and it went on and on. On paper one should feel wonderful and non Pred takers think so to. I remember forcing myself to go to a village Christmas gathering next door and a retired man from the pharmaceutical industry asked me eagerly what it was like to have the Pred giving me “heightened senses”, rush of energy and extra stamina giving me wings etc. Luckily for him I was barely standing on my under 10mg and too glassy eyed to retaliate with my mince pie with my alleged super human strength. After a few more, “you look so well” I retired home and cried. I daresay that if we were given a guaranteed end point and recognition of how we can feel on low doses we’d feel much better. Not everyone feels like this but I think it’s awfully common.

Viv54 profile image
Viv54 in reply to SnazzyD

I have so many symptoms similar to yours , I think frame of mind plays such a strong roll in how we cope .Some days I despair others I feel like im on my way to feeling better, your daughter's video is fab, the words ring true ! You must be so proud , she has an amazing voice, thanks for sharing 😊

SnazzyD profile image
SnazzyD in reply to Viv54

I attached a song below in reply to strawclutching

Hi Snazzy. When you say you pop a 1mg or 2mg to assist your adrenals 'occasionally', is that just for one day, and then you're back down to zero, or do you maintain that for a few days depending on how you're coping?

This is for when I have what I call a crisis but I don’t mean sick day rules which I think you can find in the FAQ’s. I pop the Pred and then go to bed until I feel ok which can be hours then absolutely nothing for the day and I take it easy the day after. This has been enough. When I got Covid last year I did a week of 2mg (I was on 0.25/0.5mg at the time) because I had a hunch that I needed to to help inflammation and I felt I had no resources. That was different.

I never ever do it for feeling tired and wanting to get through something, like a pick me up. So examples would be when I had a fit of joie de vivre on a rare holiday and walked up a small mountain with dodgy Achilles’ tendons. The pain for two hours was so bad I maxed out and I had a collapse which felt like low blood sugar at first but eating didn’t help. 2mg on the hill, helped down slowly then bed for the day. Another after 6 months after I stopped Pred was an extremely emotional day taking my daughter to her first leaving home dwelling not knowing when I’d see her again, Covid etc. Early start, longish drive, carrying boxes, tears etc. By 3pm, bang. Another was a fall a couple of months later trying to stop my dogs getting a deer in our garden.

My signal to do this is feeling totally empty, slight panicky doom feeling, nausea, pain in kidney area, clammy, sometimes a loose motion, low blood pressure and I want to eat salted crisps/chips.

I don’t know if this will help or resonate but this song of my daughter’s might be the low dose anthem.

youtu.be/P5CIetPkhpk

Hollybee21 profile image
Hollybee21 in reply to SnazzyD

Clever young lady with a beautiful voice.

Thanks Snazzy, that's quite an insight. Sorry if this is a daft question, but does this mean that once / if we come off Pred altogether, our adrenals will never be at full performance the way they worked before, and we will always have to have Pred standing by just in case?

Good question. No idea. They say it takes a good year to recover and you should carry your steroid card or alert in case of emergency. I find it unpredictable as I can get away with a challenge one day a feel quite smug but the next I can’t. I don’t know how long it’ll be before I am confident to go out into the world without that little blister pack next to my keys. I do wonder if some people have a very low level insufficiency which doesn’t show up other than the person feeling like they didn’t have the same oomph or don’t deal with stress as well. I’m not panicking because I’m only 10 months away from zero daily Pred and it took me 5 years to recover from chemo so since Pred affects every little bit of us, I assume it’ll take more than a couple of months to get back. Mind you, some get back to a high level of physical activity and function. I know that won’t be me so I must learn to enjoy the scenic route instead of the fast lane.

I suppose the scenic route is something we have to get used to during the long treatment path of ups and downs. Thanks so much for sharing.

I have been on pred for 4 years for PMR. Now down to 1.5mg. Got to 1mg 18 months ago but had a flare up and back up to 10mg. Spoke to rheumy about her thoughts on staying on low dose long term but she was very anti this - said I was very young at 60 to be thinking of staying on long term as that would be a big cumulative amount... depending on how long I live! Talk it through with your doc/ rheumy.

Hollybee21 profile image
Hollybee21 in reply to TB1208

Will do. Thank you.

SnazzyD profile image
SnazzyD in reply to TB1208

Hmm, never mind quality of life eh. Interestingly once I got under 3mg my docs stopped worrying. Perhaps they were assuming that it was plain sailing from there but the scare stories stopped.

You might be interested in this look at long term issues being minimal under 5mg

practicalpainmanagement.com...

TB1208 profile image
TB1208 in reply to SnazzyD

That's interesting - thank you. Rheumy said she won't be seeing me again as nothing more she can do for me 🤔 I'm doing my own thing and staying put at 1.5mg for now.

Yes, quality of life rules!

Hi Hollybee - I have been on pred for 5 years, started at 60mg for GCA, really struggled with the tapering as GCA symptoms kept lurking around.Got to 6mg a over a year ago, when daughter got breast cancer, moved house & husband got heart problems , pretty stressed went up to 7 to manage everything, daughter & husband now fine. My wonderful Rheumatologist was convinced from her years of experience I was experiencing adrenal insufficiency, even at 7.0, referred me to a very eminent Endocrinologist in Oxford called Professor Wass, saw him last October, had the synthacen test, showed virtually no function, he totally agreed with her that you can experience symptoms from 8mg down. He was not sure whether the adrenals would function again as he felt they should have showed some activity - decided to try & switch to hydrocortisone but that was a disaster. I saw him again last week (I am now at 6.0mg), he wants me to have another push at reducing, obviously v. Slowly & every month have the simple basal adrenal function test at my doctors, & when I get to 5mg have the synthacen test. Speak to him again in 3 months.

So don’t give up hope.

Thelmarina profile image
Thelmarina in reply to Sho-Sho

So pleased you are being given such supportive and sensible advice. Makes you feel better at once! 🌺

It does. Thank you.

Hollybee21 profile image
Hollybee21 in reply to Sho-Sho

Thank you. Everyone is so supportive.

I saw my rheumatologist who when I asked about my adrenals starting up again, I am on 8mg, she told me that my adrenal glands are still functioning regardless of the pred that I’ve been taking since October’19, so I won’t have problems from reducing? 🤷‍♀️

How did she know this ? Did she give you a test ?.and if you don't mind me asking how long have you been on pred ? It's just that I'm really struggling atm on 6.1/2 and my Dr doesn't seem to realize about having a test to see if my adrenaline is working.Thank you 😊

SnazzyD profile image
SnazzyD in reply to Viv54

Don’t worry, your adrenaline isn’t the same as Cortisol and steroids don’t suppress it in the same way. Steroids actually increase the production of adrenaline. When we talk about adrenal insufficiency we mean cortisol which also has a role in fight or flight but not the same.

HeronNS profile image
HeronNS in reply to Viv54

You would not be able to have a useful test until you were below 5 mg, preferably somewhat lower, as your cortisone production is suppressed by the pred. It will (or almost certainly will) begin to recover after you have been below 7 and especially below 5 mg for a while. In the meantime, as the others have said, the best way is a very slow taper of the dose. Try to taper slowly enough that you don't feel the need to increase, because every increase in your dose will set back the adrenal recovery by a tad. Better to stay at a low dose a bit longer, and taper very slowly, perhaps using one of our slow taper plans, and avoid the reaction which makes you need the top up.

Viv54 profile image
Viv54 in reply to HeronNS

Thanks so much for your reply, sorry i have not got back sooner, gives me a glimmer of light at the end of the tunnel, just not used to playing the really slow game . Best wishes Viv x

Sorry I can see you have been on them since 19 about the same as me !

No she hasn’t done any tests for that but also has said the if my inflammation markers are within the normal range, I’m not having a flare. Even if I ache in the shoulders, hips, etc. She has told me to take it slowly with reducing so .5mg every 2 weeks which is 1mg a month. I have to say I’m struggling. I’m very interested in how other people manage. Thank you in advance.

Thanks for your reply, yes it's hard, I'm dropping half an mg a time , but it's been a rollercoaster ! At one point I had to up them as I could not function properly, the fatigue was awful. I had anxiety the shakes and many other side affects . So I've learnt my lesson.I drop very slowly and if I feel ill I increase slightly. I was trying to put a time on when I finish , now I just take my time .Hope we all get there .Good luck , best wishes Viv.

That is good advice, I haven’t thought of it like that. I’ve been hoping that I’ll be nearly back to normal and going back to work ASAP. Maybe I should take the pressure off and go with the flow a little more. Thank you Viv54

Your welcome.😊

PMRpro profile image
PMRproAmbassador in reply to Whatawonderfullife

Dear lord - where DO they get their ideas from!!!! They function - but they DON'T produce any cortisol (or shouldn't or you;d be in trouble). And if you are on pred then the markers often DON'T rise even though there is some inflammation. Symptoms ALWAYS trump lab results. Treat the patient in front of you - not the textbook that was probably not even correct about the average patient ...

Oh yes - and above all, you are NOT heading relentlessly for zero, you are looking for the lowest effective dose - it is called titration ...

To be honest, if it wasn’t for here I’d be in a completely different place. I know the zero mg is my Rheumatologist’s plan but how I’m feeling at the moment, it will take a while. There’s not really any point emailing their help line, it’s always blood test then, there is no flare, markers are within the normal range, keep going.

I’m not sure if its withdrawal, flare or what. Thank you for listening. I find all the info here helps me cope. 😊

I quit using prednisone about 3 months ago, and I have eternal exhaustion. I have to force myself to get up to do the basics like bathing, going to work and doing chores. I was doing the weaning with little to no adverse reactions. Then finally I had to quit taking prednisone, then I hit a wall and I keep hitting that wall. The good news is that I lost 37+ lbs. and got some of the energy. I still have trouble waking up. Help!?? Maybe??

PMRpro profile image
PMRproAmbassador in reply to Yollieursa

It is felt that it can take up to a year after stopping pred altogether before the adrenal function is reliably back. In the meantime, your GP really should be keeping an eye on you and you should probbly have an adrenal rescue pack to hand, just in case.

I had adrenal problems after coming off steroids a few years ago having been on them for about 5 years. I was put on hydrocortisone and after a few months my adrenals did start to work a little bit, albeit sluggish, so there is always a chance. Unfortunately I had to go back on steroids a few months later as the PMR was still there and am being told it is unlikely I will ever be able to come off them, we are looking at getting below 10 not trying to get off entirely.

I did a bunch of research and found a study that suggested it that once you get below 7mg, it can take an amount of time equal to the time you were on higher doses of prednisone for the adrenals to restart. So if you were above 7mg for 2 years it could take 2 years below 7mg for the adrenals to reatart. So it is a very slow process. Since you never got below 7, your recovery clock (so to speak) is still ticking up in time. Getting below 7 or 8 is a very difficult step for many people. I would take .5 less every other day. My doctor also had me start splitting my dose because I couldn’t get through the night. It can still take me 2-3 months to get down 1/2mg at this point. And I had a huge flare after the covid vaccine. Had to triple my dose from 3mg to 9mg. It’s been about 2 months and I am down to 4mg but having to split that morning and evening or my sleep is disrupted. I actually need a dose around 6mg if I only take it in the morning so taking 2am and 2pm works better right now. All that to say… just keep trying to get that dose down very slowly. Even if it’s 1/2mg every other day or if it takes splitting the dose. Either you will eventually get off it or you won’t, but either way the lower you can get your dose the better, long term.

Perhaps at 5 mgs you could ask for a referral to an Endocrinologist. Mine is keen to work with me once I get back to that level and contacts me now and then to see where I am at with reducing. He motivates me. Quite a different vibe to Rheumatology - upbeat and he loves an explanatory diagram. Don’t be shortchanged.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Is your endo in Leeds via Sarah or Sheffield?

SheffieldJane profile image
SheffieldJane in reply to PMRpro

Sheffield via Sarah. I couldn’t reply so I did a new post.

PMRpro profile image
PMRproAmbassador in reply to SheffieldJane

Figures - I suspect they are collecting data ;)

The forum is mucking about - very slow to load using the email notification link and Reply. Other links seem better ...

SheffieldJane profile image
SheffieldJane in reply to PMRpro

That fits.

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