Adrenal insufficency

As you all know by now....I have been on your forum for almost five years and have gained considerable information and insight in dealing with this awful disease. (I haveGSA and PMR. ) I have made it through shingles, spinal fusion and laminectomy surgery as well as two cataract operations. Just recently did I find on your forum the information that not all the prednisone we take...those mgs that are so carefully measured each day are actually absorbed. What a revealation that was...my rheumatologist agreed and acknowledged that there was no way to tell. It was then that she mentioned that I must go into adrenal insufficiency at those times when a normal person would get a shot of adrenaline to get them through a scary situation. I take that to mean I am at the amount of prednisone I need and should not reduce, Does anyone have any thoughts on this,? She suggested that the food I was taking with it was somehow hampering the absorbtion.

18 Replies

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  • I think there ARE ways to tell - you give a dose and measure how much appears in the blood ;-) How does she think they established the figures in the first place? But actually it doesn't matter really as you look for the dose YOU need - or at least, it doesn't matter until doctors start worrying because YOU need 10mg while another patient manages well on 6mg.

    I have to say - I'm a bit confused by her thinking! What dose are you on now?

    The dose you need to manage the PMR may well be lower than the dose that is equivalent to the amount of adrenaline you need (so to speak). When you continue to reduce below the physiological level, doing it slowly becomes even more important to allow the adrenal glands to start to top up the amount of pred you are currently on. For most people the function returns - as long as you go slowly enough.

  • I am on 12. When she pushes me to go lower ..my symptoms return. Exhaustion and some muscle aches. The first go round I got to seven before a flare...this time I cannot get below 10 . She does not think my adrenal glands will function at this late date. She has declared 7.5 to be my appropriate dose. That is when I posited that maybe I was not absorbing it all.

  • I do know several people who had been on pred for 5 or 6 years who have got off pred without problems. And one gentleman who had been on pred for 11 years - who also got off pred altogether!

    However - I do see there being a decided advantage to having a doctor who thinks that way - she isn't going to be pushing you to reduce when you can't!

  • Thanks for everyone's help. I really appreciate it. My last thought is ..if I am only absorbing 50% ..them my twelve mgs are really only six and I am below that 7 level.

  • Hi 30048,

    What your Rheumy meant, but perhaps didn't explain very well is that once you have been on Pred for 3 weeks your adrenal glands stop working. That's because Pred is an chemical version of cortisol or adrenaline, and therefore there is more in your body than you would normally produce.

    The amount your body produces naturally is roughly equivalent to 7mg of Pred, and sometimes slightly more when you are in the flight or fight scenario. If you are above that dose, then your body doesn't need to produce any. It's similar to a diabetic who once they are put on Insulin medication finds that their own body ceases to produce it naturally.

    That's why when you are on Pred, and do something particularly strenuous you may feel shattered afterwards - in people not taking Pred, their own adrenaline would kick in and help - ours doesn't because the adrenal glands have "switched off".

    I don't know what level of Pred you are on, but once you get to around 7mg, maybe slightly above, your glands need to wake up again, sometimes they are a bit lazy in doing that!

    The dose of Pred you need to control your GCA/PMR symptoms is not directly related to your adrenal glands. You need what you need to control the inflammation. The idea is to get to the lowest dose that controls your symptoms, so as long as you're symptom-free or relatively free there is no need to stop. Many people, especially if they've been on Pred a long time find once they get to single figures it becomes more difficult to reduce which is why they use a slow reduction plan and only reduce by 0.5mg a time.

    Your Rheumy is right in that not everybody gets the same absorption rate from Pred, don't know that what foods you eat affects it that much, but sometimes other tablets are best not taken at the same time. Sure others who have delved into things more deeply will advise.

  • Thanks for your input. I did not realize that the dose I was on did not relate directly to my adrenal glands.

  • It doesn't really - until you get to the level where they need to start working again, and as I said that's around 7mg ish. Some doctors keep their patients at either 10mg or sometimes 5mg for a longer time to "help" the adrenal glands re-awaken.

    Personally I found things very difficult fatigue wise when I was reducing from 6mg down to 3mg.

    That's another good reason to take tiny steps, ie.0.5mg and using a slow taper, it seems to help.

    Good luck.

  • DorsetLady,

    I've seen you mention that fatigue was a huge problem for you from 6 to 3 pred.

    Just wondering if that means it wasn't such an issue from 2.5 to zero?

  • Hi Meg,

    No it wasn't, and I think it was a combination of my adrenal glands finally starting to work again, not completely back to normal, as I'm not sure they are yet, even after being off Pred for 5 months. The consensus of opinion seems to be that it can take anything up to a year for your "system" to get back to normal.

    The other thing I think it was is the fact that my GCA had gone into remission around the 2mg mark, although I still continued the slow reducing just in case.

  • Seems to have been similar for me. I was rather lackadaisical for the year when I was reducing from 7 to about 2.5, and it is only at the lowest dose that I've started to feel, sporadically, some returning energy. The first time it happened I was taken by surprise, because I had completely forgotten what it was like to feel normal! I was out for a walk and felt a renewed spring in my step!

  • Hi Heron,

    Takes you by surprise doesn't it? Good feeling though!

  • Help me out, Dorset Lady. I'm down to 6 mg, reducing 1 mg per month, which was prescribed by my dr as the proper rate. He is a rheumatologist. It's almost time to drop to 5. Do you think I can get by with this or do I need to reduce by .5 for the rest of the time, What is your experience? Oh yes, I've been on prednisone since last March. No signs now of the PMR or GCA. And in your experience, do you know of people who never have them come back again. I'm so scared of this, mostly because of the side effects I've suffered from prednisone.

  • I have been on Pred for over 4yrs. Recently my ESP Physio, told me to reduce from 5mgs to 4mgs. I had been on 5 for 2.5 month. After reducing I was hit by fatigue and nausea. I persevered but these symptoms only worsened, along with weakness. All signs of adrenal insufficiency. When I seen my Rheumy a month later he said he felt I should have stayed at 5mgs, till my biologics injections start, and told me not to decrease further. A few days after seeing him nausea became severe, fatigue unbearable so I increased back to 5mgs and things improved considerably.

    Symptoms indicating insufficiency are:

    Dizziness when standing

    Nausea/ vomiting

    Fatigue

    Abdo pain

    Diarrhoea

    Hypoglycaemia

    They can do a test called a short synacten test that can tell them if your adrenal glands are struggling

    Hope this helps 😁

  • I'm as anxious as my rheumy to get off prednisone, but I see him in a few days and I will share your experience and advice with him. I have another disease, also rare, that is really bothering me right now. The PMR/GCA symptoms are gone, except shopping at Walmart yesterday, I got sudden head pains and then chest pains. Don't know what to blame it on. In Sept. I had life-threatening blood clots in my lung and had a 5 day hospital stay, so the worry is still there. Sure do want to get over all this stuff and be normal. Thanks for your expert advice. I may take it even if the doc says go faster. I have many of the symptoms you list but this other disease is probably causing them. Who knows about all these confusing rare diseases and the two-edges meds!

  • I would say that by 5mg a reduction of 1mg at a time was pushing it for most people.

    If you have only been on pred since March and you have GCA or PMR then it is unlikely they have gone into remission yet, they may have but it would be very unusual. On the other hand, it does look as if the inflammation is at a very low level. But if it is still there - you must be getting close to the aim "the lowest dose that manages the inflammation", there isn't much wiggle room left!

    How about doing 0.5mg every few weeks - and don't ignore any signs or symptoms. It would be a shame to spoil the ship for a ha'p'th of tar.

    And yes - there are people who have got off pred, a few even relatively quickly, and haven't had any more problems.

  • Hi minecreek,

    Looking at your earlier post you have come down quickly this time around, sorry to read you've had a double dose of PMR GCA.

    Although you don't have any problems at the moment, would suggest that reducing in 0.5mg steps might be a very good idea from now on. As you know each reduction becomes bigger in percentage terms as you get lower, and when you throw in the adrenal gland complication, I just think it's easier to go as slow as you can.

    There certainly are people on here still who have been free of GCA or PMR for a number of years, Celtic, piglette, polkadotcom, Raymck to name but a few, plus of course Kate Gilbert. I guess probably the majority once they are okay don't bother with the forums any more. I think that's a pity because we need them to give those still going through hope.

    I won't class myself with them as yet, only been off Pred for 5 months, and I'm very aware that it can/may come back, but each day it doesn't is good.

    I know Pred has many bad side effects, but for some it saves our sight, at least partially, and gives the majority a life they can still enjoy. But doesn't most medication have a down side as well as up!

    Take care.

  • I'm as anxious as my rheumy to get off prednisone, but I see him in a few days and I will share your experience and advice with him. I have another disease, also rare, that is really bothering me right now. The PMR/GCA symptoms are gone, except shopping at Walmart yesterday, I got sudden head pains and then chest pains. Don't know what to blame it on. In Sept. I had life-threatening blood clots in my lung and had a 5 day hospital stay, so the worry is still there. Sure do want to get over all this stuff and be normal. Thanks for your expert advice. I may take it even if the doc says go faster.

  • Hi again,

    So agree about being normal again!

    I wish you well, on all fronts, and please keep us informed.

    Take care.

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