Adrenals ...

[LemonZest11]

Just wondering ... at what point do the adrenals start to kick in? How does one know?

Thanks.

[SnazzyD]

It depends on how much Pred you absorb in reality but generally under 7-8mg Pred can be not quite enough for one’s daily needs. I found that I didn’t feel much better until 5mg but still had a long way to go to feel normal or be able to cope with any physical or emotional demands over and above a pretty quiet life. For me it was a gradual coming out of the mist but the real way to know if they are working is being challenged physically and mentally and then finding one doesn’t then feel like a wobbly heap. I felt the best on 3mg, then found the the next mg quite hard. I also stayed on 1mg or bit below for a year before zero felt ok consistently. I had a Synacthen Test at 4mg and 0.5mg with a morning cortisol level too. At 4mg it was so so and by 0.5mg they were normal. However, I do think there are occasions when I don’t think they work 100%. The bottom line is, it depends on the person.

[LemonZest11 in reply to SnazzyD]

Thanks, this makes sense. X

[DorsetLady PMRGCAuk volunteer]

Any when from about 8mg down - normal production of cortisol is equivalent to anywhere between 5-10mg Pred.

It easier to know they aren’t working, than they are!

If you are plodding along without the common signs of adrenal insufficiency (nausea, lightheadedness, more fatigue than usual) they probably are trying.....but for some it takes longer than others. I don’t think mine really got going until I was down to about 3mg.

There was a post about this subject a month or so ago, but I can’t find it.

[LemonZest11 in reply to DorsetLady]

Thanks, at 4.5mgs, going slowly but feeling tired. Otherwise ok. 🤞

[DorsetLady PMRGCAuk volunteer in reply to LemonZest11]

Tired is probably to be expected - but it’s not the same as fatigue with adrenal insufficiency - or sluggishness.

I found random bouts of fatigue (with no apparent trigger) suddenly hit me during my slow taper from 6mg down to 3mg.....then they disappeared as suddenly as they came.

Just keep reducing slowly as you are - helps both the illness and the adrenals.

[LemonZest11 in reply to DorsetLady]

Thanks. I am listening to you. Will keep going slowly and stay in touch.

[PMRpro Ambassador]

They don't "kick in" in the sense that it is all at once and stable immediately. They wake up and adjust bit by bit as you reduce the pred dose slowly. So the slower you go, allowing your body time to catch up the less you are likely to notice any deficits. But sometimes they are really reluctant - and then you know they aren't happy rather than knowing they ARE working, if you see what I mean. It's the most likely reason for someone complaining of deathly fatigue ...

[LemonZest11 in reply to PMRpro]

Yes, I am feeling fatigued, but not "deathly". Thanks, I am down to 4.5mg, going slowly.

[piglette]

When I got to 6mg the deathly fatigue set in. I reduced to 5mg and I was totally incapacitated, it was an effort to scratch my nose. I went up to 6mg for a while and it slowly improved.

[LemonZest11 in reply to piglette]

Good to know. Where are you Now?

[piglette in reply to LemonZest11]

I was at 2.5mg but have just been in hospital and they put me up to 5mg for other reasons. I did take a while from 6mg to 5mg in the end and then it seemed to improve thank goodness.

[LemonZest11 in reply to piglette]

Thank you for sharing Piglette. All info is helpful to me at the moment. xx

[piglette in reply to LemonZest11]

I found the important thing was not to reduce while I had the fatigue and even increase a bit so it is not too bad. I decided that it was important that you had some fatigue as otherwise the body became complaisant and the same thing would happen again when you tried to reduce.

[LemonZest11 in reply to piglette]

Makes sense. Wise words and I really appreciate your sharing. x

[piglette in reply to LemonZest11]

It worked for me and I was completely zonked out by the deathly fatigue.

[tangocharlie]

I got adrenal problems going below 5mg. I got all the classic signs, deathly fatigue, sense of 'impending doom', dizzyiness, unable to get warm, just felt REALLY unwell.

[LemonZest11 in reply to tangocharlie]

And did it improve?

[tangocharlie in reply to LemonZest11]

No, the first time it happened I was switched from Pred to hydrocortisone but that didn't control the PMR that was still there. I probably should have taken both a low dose of Pred plus the HC with hindsight but the doctors didn't know or tell me that, they just wrongly insisted PMR must have gone away after so many years. HC doesn't really do much for inflammation. The second time was when I had too long a gap between steroid injections so the cure was to increase the frequency of them. either case I could not have waited it out as I felt so ill, it was impossible to do ANYTHING except sit in a chair. If a synacthen test shows your adenals are capable of working but they aren#t working very effectively, then you need hydrocortisone, which I think only endocrinologists can prescribe, or more Pred, or stay in bed or a chair for months and hope things pick up.

[LemonZest11 in reply to tangocharlie]

Oh you poor thing, that sounds horrible. And where are you now? Have things improved?

[tangocharlie in reply to LemonZest11]

I have regular depo-medrone steroid injections every 3-4 weeks. I have no idea what will happen whether i will be on them for life or at some point switched back to Pred. I doubt after 9 years my PMR is ever going to go away so am trying to find a long-term management plan.

[LemonZest11 in reply to tangocharlie]

Well all the best with all of that. It’s all such a bugger. Everyone seems to manage in the best way they can ... we have highs and then the disappointment of another low. This site is wonderful. Such great support, encouragement and knowledge. Good luck in the battle xx

[York54]

I’m like you, on 41/2 mg and treading very carefully. 5 weeks at this dose now . Good luck x

[LemonZest11 in reply to York54]

And how are you feeling York54. The only side-effect I have at the moment is tiredness, and a feeling of disconnectedness. No pain, thank heavens. Planning to stay at 4.5mgs for a couple more weeks and make an attempt to go to 4 and 4.5 alternatively. Hope you are OK.

[York54 in reply to LemonZest11]

Not too bad, first couple of weeks a little nauseous and sweaty plus feeling tired. I have never got below 5 mg before but have had numerous flares in the 4 years of PMR. Take everything slowly is my advice. My telephone consultation with the rheumatology nurse was to try and get to 3 mg but no further, and drop 1mg a month. I reduce at my own pace now , but will stop at 3 mg 🤞if I get that far. Take care 😃😃😃

[LemonZest11 in reply to York54]

Sounds a bit like me. Go well xx

[123mossie]

Hi, it’s all a bit vague & foggy, I’ve been tapering to 5mgm, not quite there yet I’m alternating with 5.5, trying to sneak it down without the pmr dragon waking up. I’ve had increased fatigue the last few weeks, not ‘deathly’ but it feels like it’s in my bones. My bp is quite a bit lower than usual, less appetite than normal. I guess this is the adrenals? Oh and weeing a lot at night too.

From reading the posts I guess the thing to do is taper very slowly but do we get to a point where we need the synacthen test & how to recognise it?

Good luck

[LemonZest11 in reply to 123mossie]

That’s what I would like to know. Good luck. xx

[PMRpro Ambassador in reply to 123mossie]

If you feel OK then you can possibly get away with not having it - but one lady got to 2mg, felt fine, but had a synacthen test which showed she had no reserve function at all. Put on hydrocortisone which she didn't do well with so went back to 5mg pred. So without the test at below 3mg you can't tell.

[LemonZest11 in reply to PMRpro]

If you feel OK, is that OK?

[PMRpro Ambassador in reply to LemonZest11]

As I said - one lady felt fine - but wouldn't have been fine in the event of accident or serious illness. It's rare but it happens.

[LemonZest11 in reply to PMRpro]

Sorry, I didn’t pick up on the possible consequences. I guess the message is keep moving, slowly. Hope for the best?

[PMRpro Ambassador in reply to LemonZest11]

And work on the GP or rheumy about a synacthen test ...

[LemonZest11 in reply to PMRpro]

OK. I appreciate your advice always. Take care where you are ... we are doing well downunder. xx

[123mossie in reply to PMRpro]

So the thing to do is go really slowly with tapering to give the adrenals more time. Is it influenced by your total dose pred or time since starting treatment I wonder.

[PMRpro Ambassador in reply to 123mossie]

I imagine that a long history of pred isn't helpful! The higher the dose and the longer you were at above 10mg the longer it is likely to take to return to normal. But I think everyone is different - they do realise that far more people struggle than they had thought previously. Some people still manage to get off pred after 6 or 7 years, even as long as 11 years in one case I was told about.

There are a few people who wonder if there is a degree of adrenal incompetence involved in developing PMR.

[LemonZest11 in reply to PMRpro]

Interesting. So much still to learn, thanks again.

[tangocharlie in reply to 123mossie]

I'd say they sound like they could be adrenal problems and you need to tell your doctor and organise a synacthen test

[123mossie in reply to tangocharlie]

I’ve got a review soon so I’ll mention it thanks.