adrenals perhaps?

[ttabby22]

Hi everyone - and many many thanks to everyone for being there and supporting us as we travel the PMR/GCA road. I have learnt so much.

A bit of background - PMR diagnosed in June 2022; turned into 'probable' GCA in September; Pred upped to 40mg; been reducing slowly ever since (recently @ .05mg per month); now down to 6mg and thought I was ok but now having aches and pains mainly overnight, which go when I get up and start moving around. I have periods of chronic fatigue too. No jaw pain or visual disturbance. No criticism of rheumy or GP - both supportive and good at listening. My question is - is this adrenals or a flare? Should I increase for a short period and see what happens? (Don't want to yo-yo). Thanks again.

[DorsetLady PMRGCAuk volunteer]

May be a bit of both - although adrenals can cause aches and pains in some people [so it’s a bit difficult to tell if that or GCA/PMR] the fatigue sounds more like adrenals at your dose.

I’d be inclined to stay put for a while so long as it doesn’t get any worse and give the adrenals chance to ‘catch up’.

Probably ready this- but if not have a glance through -

healthunlocked.com/pmrgcauk...

If it does get worse then advice here for a flare- and if you follow, it shouldn’t lead yo-yo situation -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

You aren't tapering relentlessly to zero - you are looking for the lowest effective dose in a process called titration, You do it by tapering slowly to a dose that just allows symptoms to emerge and then immediately go back to the previous good dose. 6mg is marginally too low to deal with each day's new lot of inflammation. You need at least 6.5mg - you may need a bit more for a few days to clear things out but first try going back to 6.5mg.

[SnazzyD]

My experience of low adrenal function was low grade fluey aches, not “pains” that needed a bit of time to go in the mornings after cropping up overnight. That sounds suspicious. No matter how good your doctor or reduction plan (it’s great you have both!) if your dose becomes too low to control inflammation at any one time, you’ll feel pain eventually. The fatigue could be due to periodic low levels of cortisol but it could be due to rising inflammation; that aspect is more difficult to tell.

[piglette]

The ‘deathly fatigue’ definitely sounds like the adrenals. You do not need to increase your dose unless it gets too much in the adrenals’ case. As DorsetLady says just stay on the current dose for a few more days and see how it goes, if it is the PMR playing up then you probably will need to increase.

[SheffieldJane]

Have your doctors discussed Tocilizumab with you, Actemra if you are not in the UK. It can be very effective for some people in tapering down a Pred dose. I was able to go from 40 mgs to 10 mgs quite quickly without much trouble.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Unlikely -GCA - only “ probable “ diagnosis and down to 6mg

[SheffieldJane]

Ah! I think I am running on fake energy. Perhaps I should just retire for a bit. X

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Good idea… 💤💤

[Saffron23]

Hi, I am 6.5mg and feeling achy too. Added in with feeling nauseous, fatigued & generally off kilter. I believe it’s adrenal related and am hoping it will ease up a little...soon!

I have an elderly dog with dementia who is waking me up at 4.30am and 5.15am every morning, I cannot get back to sleep after that. So a long day..🐶🙄

Christmas round the corner and I have declined invites & decided to concentrate on me and my closest. ( and the dog…)

All the best to you, this forum is so amazingly supportive, helpful & friendly when you need advice. 😽🎄