Morning Fatigue: Just curious, I'm doing the pred... - PMRGCAuk

PMRGCAuk

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Morning Fatigue

Southmead profile image
32 Replies

Just curious, I'm doing the pred taper plan, printed from site. 1 day new, 6 days old dose, etc. That is 10 mill down to 7.5 . I wake up feeling okay, go about my morning, then about an hour later. I feel fatigued and a slight headache, and I have to lie down for a half hour. Has anyone else experienced anything like this>

Always, thank you

Peter

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Southmead profile image
Southmead
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32 Replies
MrsNails profile image
MrsNails

Hi Peter

I think maybe the drop from 10mg-7.5mg is too steep, you could try 10mg->9mg, the general rule is Drop No More than 10%

GP’s particularly think that kind of a drop is OK & it is for other conditions & Short Courses of Pred but we’re in it for the long term.....

The other point is 7.5mg is approximately the physiological dose we simply need to exist as our Adrenal Glands are Switched Off, so that could be another reason why you are getting fatigued.

Now ‘going about your morning’ - what does that entail? Could you be doing too much, maybe try reducing some of your Morning Tasks until later in the day & pace yourself a bit more. I’m thinking of my husbands morning routine 😉 while l have another cup of coffee & peruse the Internet etc.

Best of Luck 🍀

MrsN

Southmead profile image
Southmead in reply toMrsNails

Thank You, there are times when you think you will never be normal again..

Chaucer profile image
Chaucer in reply toSouthmead

I hear you loud and clear!

YuliK profile image
YuliK

Good morning Peter may I join your fatigue club.

I work a little, rest a little.

My friend complains bitterly to me that she can’t sleep at night. ( I am jealous)

I’m 77 and I wish I didn’t need to sleep so much. It started seriously when I was reducing prednisone and arrived to 5mg.

YuliK 😷

🌹🌹🌹

PMRnewbie2017 profile image
PMRnewbie2017 in reply toYuliK

I would agree with Mrs N. The drop is too big. Please please please go more slowly and adhere to the 10% guideline. I wish i had listened to the advice of others who "have been wearing the tee shirt" instead of pushing on. Failed attempts at reducing and flares, complicates the whole picture.

I was a clinical pharmacist for 35 years and I've learned more by being a patient on Pred than i ever learned from the textbooks.

Symptoms trump test results and experience trumps theory is my new mantra.

Southmead profile image
Southmead in reply toPMRnewbie2017

Thank you, it's a bit difficult here in the US, as they only prescribe 5 mill meds as the lowest dosage, so I break them in half. I will try and cut the pills more in line with 10%.

Zareda profile image
Zareda in reply toSouthmead

I’m in the US and I get 5mg, 2.5mg and 1mg pills.

Southmead profile image
Southmead in reply toZareda

I'm with Kaiser, so it's probably a generic drug

Zareda profile image
Zareda in reply toSouthmead

Maybe that’s it.....I have Amerihealth and they allow prednisone in the lower dose increments.

Southmead profile image
Southmead in reply toZareda

Checked with my GP at Kaiser, now getting 1 mill preds, so that will help.

On we go, always so thankful for the help on this site, invaluable.

Zareda profile image
Zareda in reply toSouthmead

👍

gaqke10 profile image
gaqke10 in reply toSouthmead

I live in the US and I get 1 mg and 2.5 mg tablets no problem. Are you taking a particular form of prednisone that doesn't come in those dosages?

Southmead profile image
Southmead in reply toYuliK

Yes, that 5 mill barrier seems hard to get over.

SnazzyD profile image
SnazzyD

Once I got to this adrenals needing to wake up phase, my fatigue came back with a vengeance. I couldn’t get up in the morning, despite being an early riser all my life, I went back to needing a solid sleep in the afternoon and by late afternoon I felt rubbish. At 10mg I was thinking at last I was feeling human after all the high doses previously. This didn’t resolve until my adrenal system came back on line which took a good year of very slow reducing by 0.5mg drops over 6-8 weeks.

Southmead profile image
Southmead in reply toSnazzyD

Thank you

PMRnewbie2017 profile image
PMRnewbie2017

Peter, i have replied to you but hit on Yuliks tab.

YuliK profile image
YuliK in reply toPMRnewbie2017

Was that a Freudian mistake ?

Abbey17 profile image
Abbey17

Yes I have really struggled with tapering, I became so bad I now only reduce .5 mg at a time and even struggle with that so do alternate days for two weeks then reduce by .5 for 4 weeks but even that wipes me out, plus brain fog and memory issues for about 2 weeks each time.

Southmead profile image
Southmead in reply toAbbey17

Ah yes, the brain fog, it's hard to explain to others who do not experience it. Thank You

PMRpro profile image
PMRproAmbassador

Is that an hour or so after taking your pred? Did it also happpen at higher doses? Some people find that happens as the dose of pred hits the blood stream.

The expert recommendations are for 1mg at a time once you get to 10mg - not least because you are getting closer to your target: the lowest dose that manages the symptoms as well as the starting dose did. Definitely slow down from 7.5mg though as the adrenal glands take time to wake up and join in the game.

Southmead profile image
Southmead in reply toPMRpro

Thanks I will keep patiently to the regime, and hope for better days.

Linny3 profile image
Linny3

Yep that's me almost every morning. Get up about 6:30am and I am stiff for about an hour. I do a few things around the house (nothing strenuous) and by 10 or 11 I am very tired. It is a kind of brain tired. If I lay down for 15-20 minutes then I am good to go until around 3pm. Then the same thing happens and I lay down for another 15-20mins. I am usually good to go the rest of the evening, but then the stiffness starts to set in about 7pm.

Around and around it goes.

Good Luck with the tapering

Southmead profile image
Southmead in reply toLinny3

Yes, it's brain tired, or brain fog. It's hard to focus, and just laying the head on a soft pillow is a kind of luxury.

HeronNS profile image
HeronNS

I note from a previous post that you had been as low as 2.5 mg. Is this correct? Also that you didn't in this post mention increased pain or stiffness, your concern is the fatigue and headache. My guess is you need to taper more slowly for the sake of your adrenal function. Your adrenal glands stopped producing cortisol and it takes a while before they start to pick up the slack again as your pred dose lowers. I had a pretty uneventful taper to about 2 mg, but an ill-advised effort to continue tapering led to a flare. I had to go back to 7 for a few days and then drop down again. It took me TWO years to get all the way back to 2 mg, although I was at 2.5 for a long time, and during that time fatigue which had been occasional before (notably around 7 mg btw) became a constant companion, as though the drop in dose, then the increase, had made it harder for my adrenals to recover. if this is what is happening to you there's not much you can do except give yourself permission to rest whenever you need to. Schedule into your morning that half hour of recovery you need as your body digests breakfast and the pred is only starting to make its way into your bloodstream.

You might also when you go for regular bloodwork ask your doctor to check such things as thyroid function and electrolytes. My doctor did this for me when I was complaining of the extra fatigue, and all we found was my iron was a bit low again. But it might have been one of the other factors so I'm glad they were ruled out.

Southmead profile image
Southmead in reply toHeronNS

I almost forgot the stiffness, it's such a part of my daily life, it just there, especially when putting on socks or shoes. The brain fog seems to have increased of late. Up to now, if I stay on the 10 mill a day, I can function fairly normal. As soon as I begin to taper, the flares seem to occur, which I suppose is part of it, and one has to grin and bear and wait for better days. Yes I did get down to 2.5, but the symptons came back.

HeronNS profile image
HeronNS in reply toSouthmead

They are starting to talk about "long haulers" with covid. Every person with PMR is a "long hauler" and I wish more doctors understood that. It would make our lives a lot easier....

Linny3 profile image
Linny3 in reply toHeronNS

AMEN to that

Southmead profile image
Southmead in reply toHeronNS

My Doctor is recommending one day 10 mill, then the next day 5 mill and so forth. I'm thinking I will stick with the taper plan I got from this site, but with a smaller taper than the 2.5 mill..

PMRpro profile image
PMRproAmbassador in reply toSouthmead

I doubt the dear gent has ever done a reduction himself - that is hardly a recommendation! He should try it - his body might not appreciate it either. It is really NOT the way to reduce from 10mg and all experts say 1mg at a time from 10mg.

Chaucer profile image
Chaucer

Yes, I’m down to 4mg of Pred a day, I take it in the morning usually but after I’m up for a while I feel very tired and sleepy again so I go and rest for another half hour or so. It happens most days and sometimes later in the afternoon!!!

PMRpro profile image
PMRproAmbassador in reply toChaucer

That happened to one of my friends and her GP suggested taking the pred at night so the sleepy period happened overnight - she said it was great! The GP made a note of a successful experiment.

Chaucer profile image
Chaucer in reply toPMRpro

Thank you I’ll try that

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