Switched to pred. at night: Still hurting and... - PMRGCAuk

PMRGCAuk

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Switched to pred. at night

Celebrant profile image
13 Replies

Still hurting and aching with the pred--not keeping up with the rhummies idea of withdrawal, I switched to taking it late in the evening. Good choice for me as it gets me thru the AM and afternoon and I can ease into the evening. Before , when I took it in the morning it didn't seem to kick in until the evening and I had struggled all day. Has anyone else had this experience?

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Celebrant profile image
Celebrant
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13 Replies
PMRpro profile image
PMRproAmbassador

You aren't alone no - I've never really had a problem except when I was on Medrol and then even taking it at night it was late morning before I felt anything like half-decent. And that was at 20mg! But I know of others who do.

What dose are you on? Have you ever been relatively free of pain?

ConventCassie profile image
ConventCassie

Nighttime works like a charm. I take the larger of the 2 doses between 11:00 & 11:30 pm.

Celebrant like you I found that taking my 20mg after breakfast made me feel ill within half an hour, tired,foggy limbs heavy, didn't really come round till about 3pm. I now split my dose. At around 5.30am I get up and have some yogurt and wash down 10mg with a glass of milk. Go back to sleep, second dose after lunch before my afternoon nap. The difference is incredible, I wake up feeling well, clear headed, walking almost normally and have some energy, I'm sure I'm getting stronger too.

I changed to taking my Pred to 9pm as it took so long to kick in am and I wasted half the day. Now I can at least do things in the morning and rest lunchtime then do something later. Rheummy concerned I wouldn't sleep but very rarely have a bad night now. On 24mg.

Qubbie profile image
Qubbie

I have found out that I Need to take the prednisone immediately when I get up and just before dinner.

DavidMF profile image
DavidMF

Early on in my now three year stint with PMR I found that Pred was not working around 11pm. So changed to splitting the dose 2/3rds in morning 1/3rd evening. that was when I was around 15mgs and below. Now on 5mgs split 3.5/1.5mg. Take my first dose at 5.30am second evening after food. Don't dare to change, as currently I'm suffering with hand and pains early in the day, Dr said Ostia Arthritis and brushed it off as one of those things, but it changes every day. As per usual with PMR it's ODD and changeable.

Lin6075 profile image
Lin6075

I am astounded to read everyones treatment of their pred. doses. Thank you so much for all the info. You folks are great.

I am doing exactly the same and things are working much better. It took me a year of listening to the dr. to figure out it just isn't working. I was taking the entire does in the morning. Now When I get up in the night I take 1-2mg. of pred. Then when I wake up in the morning I take another 2-3 mg. and after 1pm I take the 3-4 mg. and then 1 mg at bedtime.

I am doing my first adjustment of my meds. today. I am on 9 &1/2 mg and going to 9 mg.

So it will be interesting to see how tapering works with the new way of taking the meds.

I actually had a morning that felt more like myself than I have in over a year. YEAH!

By the way, I have been doing this new way of taking meds. for about a week before I noticed any difference in my day.

Now if we could find something for the awful fatigue!!!!

Take Care Everyone and keep up the good fight.

enan-illuc profile image
enan-illuc

Celebrant,

I split my Prednisone dose, 4mg at about 11PM and 4mg at about 9AM for a total of 8mg. This seems to work well for me. I will taper by decreasing the morning dose by .5mg and keeping the evening dose the same. I hope this helps.

Enan

Joan-E-D profile image
Joan-E-D

I've been taking my Pred. in the evening at about 11.30 p.m. for over a year now as I felt poorly and ached until about 3.00 p.m. when I took it in the morning. Now at least I get the morning feeling pretty good and after a rest after lunch I can be fairly active in the afternoon as well. I start to ache a bit in the evening but that doesn't matter so much. I'm trying to drop down from 6 mg to 5mg using DSNS but I'm not sure if its working very well as my thighs, shoulders and arms are aching a lot more now. Will persevere a bit longer in case its Pred. withdrawal rather than too low a dose. I started on 15mg in November 2016 but had a couple of flares through reducing too fast.

PMRpro profile image
PMRproAmbassador in reply to Joan-E-D

DSNS was designed to minimise the risk of steroid withdrawal so if you are aching it is much more likely to be you are at slightly too low a dose. Don't push it. Go back to 6mg. wait a month or two and try again. You will get there - just maybe not yet.

Joan-E-D profile image
Joan-E-D in reply to PMRpro

Thanks for your advice. I'll stick with 6 mg for now especially as I'll be going to Vancouver to meet up with my daughter soon. Looking forward to being with her but not the long flight.

Christophene47 profile image
Christophene47

Yes, I feel much better at 8 pm and after than during the day. Strange.

PMRpro profile image
PMRproAmbassador in reply to Christophene47

Even when I wasn't on pred I found by late afternoon I felt a lot better - the more you move during the day the better the blood flow to the muscles, and that helps a lot.

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