Adrenal glands

[Jlml]

Hi Everyone,

Hope you are all ok.

I am at present working towards 4 mg of pred from 4 1/2 on the slow taper .

I have been very tired this week , taking lots of naps. Not in pain but very lethargic .

My question is at what stage do the adrenal glands kick in and could this be the reason for my tiredness.

If so ,at what stage do you tend to overcome this?

As always thanks for your help and advice.

[SnazzyD]

Could well be. Sounds like I was. However, it is very individual so no helpful answer to that one. I felt much better at 3mg but could not over do it like spend 2 hours in the car or have a stressful day without feeling wiped out. I still needed naps until almost zero and even then a particularly hard day would leave its mark. They don’t tend to switch on but sputter into life with good periods and not so good periods.

[Jlml in reply to SnazzyD]

Thank you for your help, this group is amazing x

[DorsetLady PMRGCAuk volunteer]

Hi,

My question is at what stage do the adrenal glands kick in and could this be the reason for my tiredness.

If so ,at what stage do you tend to overcome this?

Much the same as “how long is a piece of string”.....

Normal cortisol production varies anywhere between the equivalent of 5-10mg Pred...so we usual quote around 7.5mg is when the adrenal should be thinking about working again.

And yes, yours stuttering into life could well be the reason for your tiredness. They don’t just suddenly awake like a light being switched on, they need gentle nudging and cajoling into life...and that can take longer foe some than others.

In my case it was about 9 months overall - whilst reducing from 6mg down to 3mg, on a very slow taper and 0.5mg a time.

The only thing you can do, is as you are already doing, and be patient! They will get there eventually, but can still be well after reaching zero - in some case up to a year before they are on full power!

Once you get below 3mg if you get any worse and think they aren’t working (if you have adrenal insufficiency symptoms (nausea, lightheadedness etc) you could ask for a ACTH ( synacthen test) but that only shows they are capable of working, not that they actually are.

[Jlml in reply to DorsetLady]

Thank you for the explanation. It's so easy to give yourself a hard time. You think you are being lazy, and even after 2 years of having PMR it's still hard to accept that you can't do everything you want to in a day. But I guess I need to be kinder to myself and just do what I can x

[DorsetLady PMRGCAuk volunteer in reply to Jlml]

Totally agree with your last sentence.We are apt to push ourselves too hard- and to be down as low as you are after only 2 years is good - so don’t rush things now.

You will get back to doing what you want to do in time.

[PMRpro Ambassador]

Nothing to add to Snazzy and DL's comments - except to say this is the point it is better to slow down. This is a low dose, less than the body makes in the form of cortisol, so relatively safe and no hurry to get off it.

[Jlml in reply to PMRpro]

Thank you . It's is your slow taper that I am following 1/2 mg at a time. Thank you for helping me so much in the past , this taper system is working for me and I am so greatful x

[Telian]

Nothing to add to what’s been said except I’ve been through adrenal resurgence and like DL it took 9 months until I got to 3mg when I felt almost ‘normal’ again. Following a flare after 18months on 3mg I’m going through it second time around and having great difficulty reducing from 8mg. Rheumie mentioned Leflunomide but I am going to persevere with .5mg reductions. Just had a flare following second vaccine but settling down gradually. Such a rollercoaster it can be.

[Jlml in reply to Telian]

Hi Telian, thank you for your reply. This group is so good for support . Good luck with your taper x