Adrenal glands starting to work

[irisweeder]

Hi I am tapering well and I am now down to 6 mg and was wondering at what point does your own adrenal glands start working

[DorsetLady PMRGCAuk volunteer]

They should be starting to work now - have a look at this might explain a bit more -

Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to the normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!

You must tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.

When we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.

For the majority of people they do start working again - although it’s not like switching a light on - one day they’re asleep next day they’re awake! It takes a little while to recover all function. But there is a test (Synacthen test) to check if they are capable of working - not if they actually, just if they are capable of functioning. Usually not considered until you have got down to around 5mg, and if you’re having problems.

[irisweeder in reply to DorsetLady]

Thanks that's really useful

[Suffererc in reply to DorsetLady]

Othank you. Your answer has been really helpful to me. I have days that are really great with just a small amount of pain. Then days when it is really bad and I feel like upping the pred but don't. Now I know that is how it is supposed to be makes me feel really good. I am currently on 5 1/2 and 5 mg pred. Thank you again . I am following the Dead slow nearly stop method

[DorsetLady PMRGCAuk volunteer in reply to Suffererc]

Hi

I found days like that as well - and seemingly for no apparent reason - keep going with the DSNS method. Good luck.

[SnazzyD]

I found that when my adrenal function was coming back it was very intermittent so I could be fine then a slight shock like nearly tripping or dropping a dish of food, I’d be left shaking and weak. I’d also run out of coping juice at the end of the day and be left weeping and weak until I rallied later; it was a real nuisance. That was worst around 7mg and wore off from 5mg and went around 3mg. Keep an open mind!

[HeronNS in reply to SnazzyD]

I had similar issues, usually more like suddenly feeling I couldn't do another thing and would need to collapse in a chair. Closer to 4 mg for me, though. I remember one time we were walking along a woodland trail, for once I wasn't wearing my step counter so no idea how far we'd gone but on the way back I was really struggling and wondered if I could make it to the car. All other times this happened I was able to stop what I was doing and recoup, and I also learned to schedule in time for recovery whenever possible.

[SnazzyD in reply to HeronNS]

Yes, just like that time my husband had to run back to reception at a National Trust place to get a mobility scooter because I just ran out of beans. The lady who had to wall out with it to show me how to use it was probably getting on for 20 years older than me!

[Chrisellie]

I also had feelings of anxiousness about silly things.

[Cross-stitcher]

Am I correct in thinking that Pred only inhibits Cortisol production by the adrenal glands? Is Adrenaline production also inhibited, or do we maintain that particular (and vital) "fight or flight" hormone? And I believe that the adrenals make some other hormones too. What happens to their production when you take Pred?

[PMRpro Ambassador in reply to Cross-stitcher]

It is really only cortisol - purely because the body knows there is corticosteroid present for its use and doesn't make more. A bit like the thermostat on the central heating boiler knows the room is warm enough. The tipping point varies but us somewhere about 7.5mg pred, below that the body needs to make more corticosteroid to function.

[Cross-stitcher in reply to PMRpro]

Thank you, that confirms what I thought. It might be wise not to talk about the adrenal glands "switching off" or "switching back on" if it is only Cortisol production that is involved. Medically, true "Adrenal insufficiency" can be life-threatening as it involves all the hormones produced by these small but vital glands.

[PMRpro Ambassador in reply to Cross-stitcher]

Not necessarily - not having cortisol alone can cause an adrenal crisis which can be fatal. In fact, it is lack of cortisol that is the life-threatening part.

[Cross-stitcher in reply to PMRpro]

Thank you, I must have mis-remembered my biology lessons from school !!

[tangocharlie]

I had terrible problems, just couldn't get below 5 Pred without feeling really really unwell, no matter how slowly I tried. I didn't know at the time whether if it was just Pred withdrawal symptoms, or PMR flaring back up. My other symptoms were extreme fatigue, sudden weight loss (a stone in a week when I reduced steroids from 4.5 to 4), blood pressure falling on standing, bad depression and unable to stop crying (having never had anything like that beore). Eventually my rheumatologist referred me to an endocrinologist, I had a synacthen test and put on hydrocortisone so I could get off the Pred.