Adrenal problems or what

[2013mayo]

Hi everyone,

I have been ( I thought ) successfully reducing my pred, down to 4mg, however for the last few days I have been feeling exhausted, very tired, almost flu type feeling, aching arms no energy whatsoever, I don’t understand as I’ve been on this dose for 4-5 weeks. Could this be adrenal glands not kicking in or some other problem. It’s not covid as I’ve tested myself and it doesn’t fit with any of the symptoms, it’s just constant tiredness, I could sleep all day and night. X

[PMRpro Ambassador]

Secondary adrenal insufficiency doesn't necessarily hit suddenly - if you are only just on the low side it can take a long time to register - just like primary adrenal insufficiencystarts to show symptoms over a long period. However - I find that being slightly too low on the dose I need to manage the inflammation of the PMR also sometimes registers as increasing fatigue as well and the flu-type feeling might well fit with that.

[2013mayo in reply to PMRpro]

So should I up the dose of pred or just persevere with 4mg ?X

[PMRpro Ambassador in reply to 2013mayo]

Depends - if it is just poor adrenal function it isn't going to improve without being encouraged by the pred dose being kept low and then it should improve over time and although we usually say in a couple of weeks after moving to a lower dose it can take a long time at this level. Snazzy found it took months I think but she did continue reducing the dose from about 5 to 3mg. On that basis you need to persevere with 4mg rather than going back up.OTOH, if this is due to the dose being a tiny bit too low, and the inflammation is building up again, the problem is likely to worsen and if it is that, only going back up will deal with it. Have your blood markers, ESR and CRP, been meaningful during your diagnosis and reduction in the past?

It really is a very tricky balancing act at this stage because you have both these factors to consider. It would be easier if you could rule out the PMR still being there - but you can't.

[2013mayo in reply to PMRpro]

Hi Blood test was very high at the start of GCA but I’ve not been told what they are since. The only mention recently was high white cell count.

I’ll see how it goes, if as you say the PMR gets worse then I may well increase the dose, I’m just going to see if I improve over the near few days.

Thank you for your help x

[DorsetLady PMRGCAuk volunteer]

Similar question from yesterday - healthunlocked.com/pmrgcauk...

[2013mayo in reply to DorsetLady]

Oh, I didn’t see that. 🤔

[HeronNS]

For the time being I'd treat it like adrenals not being up to snuff and, much as you may not want to, give in a little bit and rest more. Good luck! It really is an awkward stage in the taper.

[2013mayo in reply to HeronNS]

Thank you x

[piglette]

I had the deathly fatigue, quite awful it was. I must admit I did go up 1mg which relieved it a lot, but as PMRPro says it is better to stick with it, as you will only have to go through the whole thing again when you try to reduce.

[2013mayo in reply to piglette]

Hi, Yes deathly fatigue sums it up nicely, I’m going to try and push through it if I can, this illness is really terrible, pred really messes up your system. I honestly thought I’d get over this in a few months, what a laugh, it seems to go on and on.

Thank you

Xx

[piglette in reply to 2013mayo]

You are getting pretty low on the dose now though. It is just the adrenal glands that is a shock!