I have managed to get down to 3mg after having pmr for 11 years following Dorset Lady’s slow taper. The first couple of weeks of each taper I always have a headache. Not severe though, and feel a bit yuk. After a couple of weeks I start to perk up despite a fair bit of stress as I’m a carer for my husband. I’ve always taken my pred in the morning about 9 to 9.30. What I don’t seem to have is fatigue and I’m wondering why. Is it because I take my pred relatively late in the morning that my adrenals have had to kick in? Anyone else in this situation ?
Without this site I would be floundering so many many thanks.
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Suet3942
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What I don’t seem to have is fatigue and I’m wondering why.
Just be pleased you don’t…..so many seem to suffer that.. could be that as you have reduced slowly enough it has given your adrenals the chance to start functioning… [not that I’m taking any credit for that, just nice to hear 😊]… and long may it continue.
As DL says - be grateful! The adrenal function can return at higher doses, for some people 2 or 3mg pred is loads to function well - maybe the fatigue is yet to come!!!
Dare I suggest your adrenal glands might be perkier that you expected at the moment? Your cortisol production peak is produced at night ready for the morning. Keep an open mind, but enjoy the lack of fatigue for now.
Can the adrenals begin to start up earlier, like 12/11 mg. Alternatively looks like the bother is a joy yet to come below 4 mg. Last spring/summer after the year-ish on 10 mg, I went down 9, 8,7, 6, 5 at 1 mg/month without really noticing and my body had trauma (double cataract surgery). Then the vaccine messed me up. Then this year around Easter when I was on 12 mg I definitely had total inertia. What I call my normal energy levels aren't great but I've got them back and they're certainly not that total inability to do anything.
Depends what “ your” normal level of production of cortisol is -this excerpt from my adrenals post -
WHAT HAPPENS WHEN YOU ARE ON STEROIDS?
The body normally makes approximately 30mg of cortisol per day although that is not necessarily a constant level, measurements of 300mg have been measured in patients undergoing surgery.
30mg of cortisol is approximately equivalent to 7.5mg of prednisone.Once you have been on steroids for more than 2-3 weeks and at a dose higher than 7.5mg (which is roughly equivalent to the normal cortisol production by your Adrenals [does vary between 5-10mg for individuals] known as 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!
Even on higher doses of Pred where perhaps you would not expect to feel fatigued or stressed you do, and that’s because you don’t get that extra “oomph.”
So your feeling at 11/13 may well have been temporary adrenal insufficiency.
No need to be sorry - no reason why you should have read about adrenals unless they are causing you a lot of continuing problems… your a/i issues seemed temporary-and then settled..
thanks Dorset Lady, that is really interesting. Can the signs of adrenals either coming back to strength or not working be confused with PMR? in fact what are the signs apart from fatigue?
Sometimes adrenal insufficiency can be be muscular aches (so difficult to know if PMR)-but lightheadedness, nausea and fatigue seem to be the most common.
thanks.. so I am wondering if when I got down to 6mg the flare was really an adrenal problem! but of course the specialist bumped me up to 9...to restart the tapering... I have to master these blood tests more, or at least know what I am looking at.. and possibly go to see an endocrinologist as well....
You may need to see an Endo, some do, but many don’t….it’s just recognising what is what [not always easy as we know] and then getting that across to your doctor [even more difficult at times!]…
Me? thank you but I didn't do anything! And may have it yet to come. Steady as she goes. I do wonder whether the months and months on 10 mg could be a factor, simply sitting it out and letting the PMR dwindle and the body calm down. On the other hand of course I may be hit at 4 mg. We shall see.
Well done you. I’d say be very grateful. I’ve been on 3mg once and had already gone through 9 months of fatigue by then. It could the very slow taper over 11 years that’s worked in your favour.
Everyone is different. I think what I read 8.5 yrs ago was to stay at 10mg for 1 yr to let adrenals start and I basically did that. However my recommendation would be to stay at 5 to 2 mg depending where you start feeling fatigue to stay there for months allowing adrenals to kick in.Several people have no issues but for those like myself I'd stay for a few months or more.
Staying at 10mg for a year isn't to let the adrenals start up - it is still too high a dose for that - it is to get through that first 18 months when the likelihood of flare is high, It is not until 5mg or less that you can say the pred dose may be low enough for adrenal function to be required.
I rather see it or for that matter a long time on any dose, or at any rate any moderate or small dose as sitting out the dance, giving the PMR what it needs and getting on with other things - set it and forget it. At the other extreme, we know yo-yoing isn't good. Do you think the stability helps overall, kind of the body has had a rather hectic time and is now settled into a routine, gives all systems time to regroup without being constantly needled?
Well it worked for me I never flared in 8 years. However I stayed at each drop a min of 2 mos to stabilize. I still would recommend to anyone who is having adrenal insufficiency to stay put.
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