Timing of Pred: Hi all I have managed to get down... - PMRGCAuk

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Timing of Pred

Suet3942 profile image
24 Replies

Hi all

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 profile image
Suet3942
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24 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

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.

PMRpro profile image
PMRproAmbassador

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!!!

piglette profile image
piglette

You are so lucky, you must have well behaved adrenals that don’t complain like mine did!

SnazzyD profile image
SnazzyD

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.

Mayadill profile image
Mayadill

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.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMayadill

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.

Mayadill profile image
Mayadill in reply toDorsetLady

Thank you. Should have read, sorry.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toMayadill

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..

howtotaperdown profile image
howtotaperdown in reply toDorsetLady

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?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tohowtotaperdown

hi

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.

See this for bit more info -

healthunlocked.com/pmrgcauk...

howtotaperdown profile image
howtotaperdown in reply toDorsetLady

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....

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tohowtotaperdown

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!]…

SheffieldJane profile image
SheffieldJane

well done! I am deeply envious of your taper and the absence of fatigue! X

Mayadill profile image
Mayadill in reply toSheffieldJane

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.

SheffieldJane profile image
SheffieldJane in reply toMayadill

I think you have a good point!

Telian profile image
Telian

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.

Wizards profile image
Wizards

Hi SuetI was fine at 3mg as well but it really hit me at 2mg.

I hope this isn't the case for you. I just bared it for months then they started.

I did have an endocrinologist.

Wish you the best.

Suet3942 profile image
Suet3942 in reply toWizards

oh I’m probably being too optimistic

Wizards profile image
Wizards in reply toSuet3942

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.

PMRpro profile image
PMRproAmbassador in reply toWizards

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.

Mayadill profile image
Mayadill in reply toPMRpro

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?

PMRpro profile image
PMRproAmbassador in reply toMayadill

Yes I do think some stability helps, Rushing at tapering often leaves the body on a constant hamster wheel of adjustment and it doesn't like it.

Mayadill profile image
Mayadill in reply toPMRpro

Thx. Had enough of hamster wheels at work.

Wizards profile image
Wizards in reply toPMRpro

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.

Thanks a million for your consistent attention

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