Feel worse after taking pred: Take 4mg each morning... - PMRGCAuk

PMRGCAuk

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Feel worse after taking pred

Poshdog profile image
11 Replies

Take 4mg each morning (down from 15mgs 4 years ago) and notice it makes me feel worse! Wake up with very little stiffness, take pred and about 4 hours later feel worse. Has anyone else experienced this? Tried reducing to 3.5 but aches return so am now a bit confused as to what to try next. This journey is full of surprises!

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Poshdog profile image
Poshdog
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11 Replies
PMRpro profile image
PMRproAmbassador

I think quite a few people experience it at some point - some deal with it by taking their dose before bed but that isn't ideal now you are down so low and presumably hoping for adrenal function to return. Do you wake in the middle of the night? 2am or later is ideal - then you would go back to sleep and miss the rubbish feeling.

Poshdog profile image
Poshdog in reply to PMRpro

Wake several times each night so will give that a go. Would be great to by pass rubbish feeling. Also incredibly tired, put it down to waking through night but as now more educated through forum, guess it could be adrenals. Or trying to move, or white wine! Hope it not the latter.

piglette profile image
piglette in reply to Poshdog

The adrenal glands waking up really can clobber you regarding fatigue.

Poshdog profile image
Poshdog in reply to piglette

Clobbered in the exact description and should be included in medical articles. Taking dose between 2 and 4 am is certainly helping with aches etc. but as for being clobbered...... any idea how long this goes on?

PMRpro profile image
PMRproAmbassador in reply to Poshdog

Really until your adrenal glands catch up with the lower dose of pred. One very good doctor likes to keep patients at 5mg for up to 9 months to give them a really good chance - it is low enough to poke their function but enough to be reasonably safe in the meantime. You are at a dose where a synacthen test might be worth it to see if the adrenals are capable of producing cortisol but normal service can take a while to get settled.

piglette profile image
piglette in reply to Poshdog

Mine was really bad at 5mg, so I went up to 6mg. I must have stayed on that for three months, so then started to reduce. I felt that you should really sit it out although I did go up a bit, as I felt as soon as you reduced after increasing you would have the same problem.

Poshdog profile image
Poshdog in reply to piglette

Thank you to both. Have been on 4.5mg for a year, just a bit tired, 4 mgs was when I was clobbered but also trying to move house so will persevere as don't want to increase if circumstances rather than pred/adrenals are causing it . Have also requested Covid antibody test - this will either stress me more, or if the angels are kind, perhaps a bit less!

piglette profile image
piglette in reply to Poshdog

Thinking about it perhaps I had the deathly fatigue for over three months. I asked my GP about it but I don’t think he was listening as he just shrugged and carried on looking at his computer screen.

Poshdog profile image
Poshdog in reply to piglette

We must have the same GP!

Crochetty profile image
Crochetty in reply to Poshdog

Me too

Poshdog profile image
Poshdog in reply to PMRpro

My goodness - first attempt at taking pred at 2am. The night sweats stopped. Can't yet comment on fatigue level as was so excited didn't get to sleep until after 2!🥴

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