1. < Polymyalgia Rheumatica (PMR)

Timing of taking prednisone

Posted by pst @pst, Feb 12, 2023

Some of the side effects I have from prednisone include shakiness, blurred vision, inability to stand for long periods and general lack of coordination. I’m a painter so this isn’t helpful.
I noticed by day’s end those conditions improved. I started taking the prescription before bed. Early days, but it seems to work. Has anyone else tried this AND is there any reason one shouldn’t?
Thanks.

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saltyg | @saltyg | Feb 19, 2023
In reply to @pkalkstein "Thanks, @saltyg. This article does explain why nighttime dosage works. Last night I woke up at..." + (show)
@pkalkstein

Thanks, @saltyg. This article does explain why nighttime dosage works. Last night I woke up at 2 and took 5 mg of my 15mg dose. This is the first morning in a long time that I have been able to lift my dumbbells without pain. I plan to try various combinations and will report my results.
https://www.rheumatologynetwork.com/view/nighttime-prednisone-could-address-morning-stiffness-ra

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Wondering how you are doing with new dosing time?

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pkalkstein | @pkalkstein | Feb 19, 2023

Now on Day 4 of the night/morning split. My best day was yesterday, when I could not tell in any way that I had PMR--no pain, no stiffness. The other mornings my pain rating was 0.5/10 and it was gone by noon. So I'm a real believer. Next I am going to try taking the larger dose at night.

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2 replies
saltyg | @saltyg | Feb 19, 2023
In reply to @pkalkstein "Now on Day 4 of the night/morning split. My best day was yesterday, when I could..." + (show)
@pkalkstein

Now on Day 4 of the night/morning split. My best day was yesterday, when I could not tell in any way that I had PMR--no pain, no stiffness. The other mornings my pain rating was 0.5/10 and it was gone by noon. So I'm a real believer. Next I am going to try taking the larger dose at night.

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Alright that’s such good news - keep me updated. I really have only done it that way so not sure what would happen if I took my doses the traditional way in am after waking up. Sticking with this unless I struggle.

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pkalkstein | @pkalkstein | Feb 24, 2023
In reply to @pkalkstein "Now on Day 4 of the night/morning split. My best day was yesterday, when I could..." + (show)
@pkalkstein

Now on Day 4 of the night/morning split. My best day was yesterday, when I could not tell in any way that I had PMR--no pain, no stiffness. The other mornings my pain rating was 0.5/10 and it was gone by noon. So I'm a real believer. Next I am going to try taking the larger dose at night.

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After a week this regime is going very well. On only one day did I have some stiffness (no pain) in the arms and otherwise nothing. I have gone back to my exercise routine and am going to work on my next taper. It may be that the split dose will not be so magical later (under 10mg?) but for now it's a winner for me. I never tried taking the larger dose at night. If it ain't broke ....

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1 reply
saltyg | @saltyg | Mar 4, 2023
In reply to @pkalkstein "After a week this regime is going very well. On only one day did I have..." + (show)
@pkalkstein

After a week this regime is going very well. On only one day did I have some stiffness (no pain) in the arms and otherwise nothing. I have gone back to my exercise routine and am going to work on my next taper. It may be that the split dose will not be so magical later (under 10mg?) but for now it's a winner for me. I never tried taking the larger dose at night. If it ain't broke ....

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I hope it continues to work for you….🤗

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milld835 | @milld835 | Mar 5, 2023

I'm currently on 55 mg. of Pred for what was suspected GCA and having a really difficult time with it. Shakiness, extreme fatigue, exhaustion and weakness. Coordination is off in hands to wear I thought I might actually have Parkinsons or worse. Brain fog.
My thought was "is it the timing of the Pred"? These symptoms are really debilitating with a trip to the store wiping me out to wear I crash on the couch for a couple or so hours when I get home. Literally soaked with sweat, head to toe.
I take my dose at 7AM with food and then around 10:30ish, I'm famished again. This goes on all day. I eat a regular supper around 5PM and then everything starts to level off, but the hunger doesn't. I'm wondering about splitting the dose, but unsure how to do so.

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4 replies
saltyg | @saltyg | Mar 5, 2023
In reply to @milld835 "I'm currently on 55 mg. of Pred for what was suspected GCA and having a really..." + (show)
@milld835

I'm currently on 55 mg. of Pred for what was suspected GCA and having a really difficult time with it. Shakiness, extreme fatigue, exhaustion and weakness. Coordination is off in hands to wear I thought I might actually have Parkinsons or worse. Brain fog.
My thought was "is it the timing of the Pred"? These symptoms are really debilitating with a trip to the store wiping me out to wear I crash on the couch for a couple or so hours when I get home. Literally soaked with sweat, head to toe.
I take my dose at 7AM with food and then around 10:30ish, I'm famished again. This goes on all day. I eat a regular supper around 5PM and then everything starts to level off, but the hunger doesn't. I'm wondering about splitting the dose, but unsure how to do so.

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Maybe change your timing…?
https://www.rheumatologynetwork.com/view/nighttime-prednisone-could-address-morning-stiffness-ra

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pst | @pst | Mar 6, 2023
In reply to @milld835 "I'm currently on 55 mg. of Pred for what was suspected GCA and having a really..." + (show)
@milld835

I'm currently on 55 mg. of Pred for what was suspected GCA and having a really difficult time with it. Shakiness, extreme fatigue, exhaustion and weakness. Coordination is off in hands to wear I thought I might actually have Parkinsons or worse. Brain fog.
My thought was "is it the timing of the Pred"? These symptoms are really debilitating with a trip to the store wiping me out to wear I crash on the couch for a couple or so hours when I get home. Literally soaked with sweat, head to toe.
I take my dose at 7AM with food and then around 10:30ish, I'm famished again. This goes on all day. I eat a regular supper around 5PM and then everything starts to level off, but the hunger doesn't. I'm wondering about splitting the dose, but unsure how to do so.

Jump to this post

I had the same reactions with high dosage. I’ve banged into everything possible in the house and I found the hand shakiness and sweating awful. Then I’d start getting mad at myself which lead to being mad at myself for getting mad at myself. As my dose has decreased the side effects have as well. So hang in there. My temporal biopsy for GCA was normal so I was able to start decreasing dosage. Thinking of you; I know exactly how you’re feeling.

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1 reply
don57 | @don57 | Mar 6, 2023
In reply to @milld835 "I'm currently on 55 mg. of Pred for what was suspected GCA and having a really..." + (show)
@milld835

I'm currently on 55 mg. of Pred for what was suspected GCA and having a really difficult time with it. Shakiness, extreme fatigue, exhaustion and weakness. Coordination is off in hands to wear I thought I might actually have Parkinsons or worse. Brain fog.
My thought was "is it the timing of the Pred"? These symptoms are really debilitating with a trip to the store wiping me out to wear I crash on the couch for a couple or so hours when I get home. Literally soaked with sweat, head to toe.
I take my dose at 7AM with food and then around 10:30ish, I'm famished again. This goes on all day. I eat a regular supper around 5PM and then everything starts to level off, but the hunger doesn't. I'm wondering about splitting the dose, but unsure how to do so.

Jump to this post

It's been a couple of months since being diagnosed with PMR. I started at 40 mg, and the first month was great with the pain gone. My doctor warned me, and he was right. Day 31 the wheels started to fall off with all the side effects as you described. But then, after the last month, I was able to start reducing the dosages. I went from 40 mg at the start to now 15 mg. I take 5 mg three times a day. The side effects lessen with each reduction, though still exist. I go to the gym in the morning before I take my first dose, so I can work out. Learning to be strategic... with the doses. This treatment with prednisone is brutal!

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1 reply
milld835 | @milld835 | Mar 6, 2023
In reply to @pst "I had the same reactions with high dosage. I’ve banged into everything possible in the house..." + (show)
@pst

I had the same reactions with high dosage. I’ve banged into everything possible in the house and I found the hand shakiness and sweating awful. Then I’d start getting mad at myself which lead to being mad at myself for getting mad at myself. As my dose has decreased the side effects have as well. So hang in there. My temporal biopsy for GCA was normal so I was able to start decreasing dosage. Thinking of you; I know exactly how you’re feeling.

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Thank you. I appreciate your reply. It's been a brutal day today after decreasing from 55 to 50 mg. yesterday. I'm so glad you had a normal biopsy. All the best with your continued decreasing. Hang in there.

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