PRED 50 mg ~ Time of Dose Changed

[Missus835]

I've been on high dose Pred 60mg, now down to 50. I was taking it around 7:00AM with food. Experienced such energy crashes, shakes, tremors, fatigue and weakness beginning around 10-10:30AM and the rest of the day is pretty much a write-off.

Yesterday was my daughter's birthday and I was unable to do much at all. Around 10:30 I became ravenous, so we did go out for breakfast and that was it...back home to the couch for me.

Last evening I decided to start trying at 2:15AM with a bit of food and water. The only drawback for me was "will I be able to get back to sleep". My alarm woke me @ 2:15, I took the Pred, went back to sleep and actually slept to 6:00AM. No hunger pangs, no shakes - yet. Had my coffee.

For me, this is a win. Just waiting to see how the rest of the day goes and will keep you updated.

[lennysmummy]

I’m very interested in this as mine also take about 3 hours and then day day is a right off. 😩

[Missus835 in reply to lennysmummy]

I don't have much to add as I'm in the "experimental" phase. I had to do something. I know this is a disease and I also know that many times I will feel like junk...but this morning after the much earlier dose, I do feel at least different. It's now 7:45 and I'm not crashing (this about 5-1/2 hours after taking the Pred.

[lennysmummy in reply to Missus835]

yes mine has just started now. Hate the feeling of them when they hit! Then the day is a wipeout. Just want to curl up and do nothing. Eyes get more blurred, energy zaps and can feel blood pressure on the rise!

[Missus835 in reply to lennysmummy]

I know exactly how this feels as do many on this forum, I'm sure. It is pretty much all I have to rely on at this time and I did see where a couple of members had tried this. Even a few hours a functionality in the morning means so much to me.

[PMRpro Ambassador in reply to Missus835]

Logical - it is usually 3 hours or so later - you slept through it.

[Missus835 in reply to PMRpro]

Yay!

[piglette]

I take mine at 2am with a piece of hard cheese. Works well.

[Missus835 in reply to piglette]

Thanks Piglette. So far so good for today.

[HeronNS]

Been taking mine at 2 am for quite while now and when I tried switching back to breakfast time found I didn't feel so well when first awake, so back to 2. Very seldom have trouble dropping off to sleep again. I take mine (small dose) with a bit of plain yoghurt and a little water. With a large dose I think I'd have more food.

[Missus835 in reply to HeronNS]

Yes it seems to be working well if today is any indication. 2 it is. I'm glad it works for you. A small win but a win nevertheless.

[Missus835 in reply to HeronNS]

I have to say that 1 hour DST time change messed me up a little, but this will level off, hopefully tonight.

[HeronNS in reply to Missus835]

I didn't even bother turning my light out until I took pred. Of course that meant having trouble getting up this morning! DST is for the birds, not old humans!

[Missus835 in reply to HeronNS]

LOL totally agree about DL Savings Time. What a silly concept as if adding an hour at end or beginning of the day makes it any longer. Just throws things out of wack.

[DorsetLady PMRGCAuk volunteer in reply to Missus835]

😊😊Warning - history lesson coming up -

lifeconnect24.co.uk/blog/da...

timeanddate.com/time/dst/hi...

[HeronNS in reply to DorsetLady]

Personally I'm quite concerned about the possibility the US will go on permanent daylight time. For business reasons Canada will inevitably follow suit. I think the reason is to allow more evening hours when the well-heeled can play golf. It simply is a bad idea in northern climes. I remember hearing about that 1960s experiment in the UK - children in Scotland struggling to school in pitch darkness. No wonder it was unpopular. For our health we need morning light, not evening sunshine!

It also tells us something that the adoption of Daylight time occurred during wartime, and instead of staying with it year round forever countries reverted to Standard time whenever they could. Like every winter!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

See my reply -healthunlocked.com/pmrgcauk...

- golfers may like lighter evening - but farmers need it...

[HeronNS in reply to DorsetLady]

In Canada there are major agricultural areas which do not make the switch - because of their animals! The daylight hours are the same no matter what the clock says, so the farmers aren;t getting more daylight just because we move the hands of a clock!

[HeronNS in reply to Missus835]

I agree. It might have served a useful purpose once upon a time, but not today.

[PMRpro Ambassador in reply to HeronNS]

It depends where you are. They did a test "no change" in Scotland years ago - and the accident rate at rush hour when it was darker went up. It was rather foul sitting watching the sunrise at shortly before 10am! It was dark going to work and going home.

[HeronNS in reply to PMRpro]

Our accident rate always goes up here, much further south than Scotland, on the Monday after the time change. We've heard much more about that since GWB made daylight time start a week earlier and end a week later, therefore not even aligning with the equinoxes.

Hope you can see this image:

quotation

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

That may be true - but the original indigenous people in every country lived their lives by the sun...some who work the land still need to [with minor adaptions]

[HeronNS in reply to DorsetLady]

Problem is we aren't really living our lives by the sun. If we were we would never have to get up and go to work or school in the darkness, or struggle home after dark. We aren't going to agree on this, but it has been shown that keeping a regular clock and not switching back and forth is better for our health. Also that we need sunlight early in the day, not late in the day. Which means to my mind that the general population should not be forced to adhere to a different schedule twice a year. We don't save energy now, with factories working 24/7, and people can go play golf or cut their hay or milk their cows at whatever time suits them. Change the office hours, not the universal clock!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Agree it may be outmoded and certainly inconvenient for many in today’s world.

But I’m guessing there are more important things to worry about -and unless you get a groundswell of support from a wide ranging community -it ain’t gonna happen.

[HeronNS in reply to DorsetLady]

No, what I'm most worried about is all of North America switching to year round daylight savings. In the North there's no end-of-day light to "save" and it makes the dark mornings last longer. As I'm not usually in traffic on Mondays, not too concerned about the statistically-significant increased likelihood of being involved in an accident when people lose an hour's sleep. I'm hearing of more people actually taking that Monday off work and for the first time hearing a lot more people complaining about the spring forward change.

I remember how happy I used to be when the children were little and we switched back to standard time because it was so much easier to get them to bed. It was almost like a vacation for me!

[DorsetLady PMRGCAuk volunteer in reply to HeronNS]

Farmers may well disagree.. they need all the daylight they can get during harvest time - as it is they have to through the night - until the crops get dewy and they can't cut any more.

... and there are still people in jobs where they see little light during the working day - so extra in the summer evenings are a real boost...

[Joseph14612]

Thank you Missus835....this describes me for the last 10 months...I started at 60 as well, I am down to 12m.5 today...and I feel this way all day! maybe worth a try , thank you once again...

[DorsetLady PMRGCAuk volunteer in reply to Joseph14612]

Would say some of your issues are down to following too a fast taper... it okay down to about 20mg but then you do need to slow up.

[Joseph14612 in reply to DorsetLady]

Thank you DL...My rheumy wants me down to 10 by next week then stay there for awhile....I think it will be 1 mg at a time...I am also on Actemra ...week 14.

[DorsetLady PMRGCAuk volunteer in reply to Joseph14612]

Actemra may help you reduce more quickly, but as often said on here it not the magic bullet for everyone that some rheumies think it is... good luck, but don't just accept the fatigue.

[PMRpro Ambassador in reply to Joseph14612]

I'm on Actemra too - still was to reduce pred from 20mg SLOWLY! And not to start for a couple of months. Some rheumies think it is easy-peasy on Actemra, not necessarily so ...

[Joseph14612 in reply to PMRpro]

actually I was up and down from 30,20 then back to 30etc., for a couple months, maybe three months because of headaches but it seems like headaches were related to neck and sleep. Tylenol helps with the headache but neck brace helps too , along with PT… looking back I probably was diagnosed with GCA and PMR last April, so about 12 months when I started prednisone.