Odd turnaround of energy symptoms.

[SheffieldJane]

I am tapering to 6 mgs from 7 (DSNS). Of late I have had swooning exhaustion during the day and difficulty maintaining body heat. Now all of a sudden I cannot get to sleep for a nap and I feel bristling with energy at bed time and find myself reading into the small hours. ( Would love to talk but nobody awake to talk too) Body temperature on the too warm side. It is frustrating to feel at my utter best when the world sleeps. No pain, busy brain. The furthest away from my Pred dose possible. Only other change is new blood pressure meds and a normal reading.

Could this be my Adrenal function beginning to work?

I think I feel worse after morning dose of Pred, headache but not mush else except tired.

Not complaining, I'll take it, but it's a puzzler!

[Hindags]

Did you suddenly discontinue a blood pressure medicine that was a beta blocker? Some people get rebound effects. What were your heart rate and blood pressure before?

I got rebound coming off atenelol for amlodipine. Atenolol is a beta blocker, lowers heart rate. I hated how I felt. Heart pounding.

Just a possibility since you mention new blood pressure meds.

[SheffieldJane in reply to Hindags]

No my Amlodipine (5mgs) has been added to Atenolol 50 mgs. The liveliness I describe is painfree and pleasant. I'd like to ditch Atenolol but I have heard it's tricky, it never lowered my always raised blood pressure ( just above normal and different in each arm).

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

It may be the added Amlodipine perhaps. It was on pre Pred days but I started it so long ago can’t really remember how it was. Off it now, post Pred and off Atenolol - no problems. Perhaps you should discuss with GP.

[Hindags in reply to SheffieldJane]

Well then, I'd say enjoy the newfound vitality. Sounds like a rebirth. But please, as you well know, all things in moderation.

PS, like you I'd be trying to understand what it is and why now. Sometimes though, turning over all those stones is exhausting and unfruitful.

[Charlie1boy]

Hi Sheffieldjane

Don't know whether this is relevant, but I seem to remember PMRpro posting once that PMR can often fluctuate even on a daily basis.

I am down to 5mg now after two and three quarter years, and some days I feel absolutely fine when I get going, whereas on others the opposite is true. This has nothing to do with whether I have tried to do too much on a given day. So, whilst on some days I am wondering whether to increase my pred by a half mg, the next day I get tempted to think about a taper. As it is, I intend staying on 5mg for at least a month, maybe longer.

However, for you, your post implies better news, and long may this last for you. PMR moves in mysterious ways it's wonders to perform!! Not sure wonders is the best word, but you know what I mean,

Good luck

Paddy

[SheffieldJane in reply to Charlie1boy]

Thanks Paddy. It's all hard to make sense of sometimes. I aim to stay on 5 mgs for a while too, if I ever get there.

[Zofitmogelijk]

O poor you! It is a mysterious disease is'nt it? There was a time I had the feeling my inner thermostat was broken but under 5 Mg all is more even Sincerely hope that goes for you too and you 'll be there soon. 🌈 take Good care

[SheffieldJane in reply to Zofitmogelijk]

I can relate to the thermostat being broken. I think my Graves' disease contributes to that too. There has been some change in my Thyroid blood tests indicating a need for a small lowering of the dose ( 125 microgrammes every other day alternated with 100.)Thyroxine that is. I got so cold that I thought I'd never get warm. Even if it is the middle of the night it's nice feeling in the mood for a party.

[PMRpro Ambassador]

Have you had your thyroid function checked? There is a form of autoimmune thyroid disorder where the function swings about, hypo and then hyper shortly afterwards.

Otherwise - enjoy feeling well!!!!

[SheffieldJane]

Thanks PMRPro, back to normal drear tonight. Nice while it lasted ( I'll never find that recipe again).

[PMRpro Ambassador in reply to SheffieldJane]

If you do - pass it on to us!!!!!

[Zebedee44]

Hi Jane

Coincidentally I am tapering to 6mg from 7mg using Dorset Lady's method, but I found that my pharmacy had put up the 5mg tablets as enteric coated so I have been taking the entire dose at bedtime and finding it keeps me comfortable throughout the day and has not disturbed my sleep.

Maybe worth trying yourself. I couldn't cope with sleepless nights either!!!

Best wishes, Chrissie

[SheffieldJane]

Thanks for the tip Christie. Who knew?

[Klah]

That is kind of the story for me for the past 3 years....from 1 pm to 4 pm I have been always in different degrees of fatigue...then a surge of energy. Maybe the surge is relative to the degree of utter exhaustion...? 😊

[Ponywoman in reply to Klah]

Klah, have read many times that our internal clock, esp our own cortisol production is at its lowest during the very hours you mention. Then, boom, our natural cortisol production "goes off" at 4:00 or so...at which time its at the highest production. Thats one reason the experts advise to take our cortizone meds in early morn. That & because late evening or nite prednisone consumption can cause wakefullness at nite. I think the natural very early morning production of cortisol, comes from our early ancestors whose bodies were being prepared to rise with the early dawn. Your experience you cite is only the very nature of our primitive inheritance! Very natural, actually.

[Klah in reply to Ponywoman]

That makes sense to me! I try to rest between 1-4 pm, but that doesn’t work very often. Always hard to say “no” to pressing things. Thanks for the info😊