Down to 1mg prednisone and then extreme fatigue sets in.

Posted by allinge @allinge, Jun 20 9:25am

I was diagnosed with PMR in January after ending up in emergency with extreme pain and unable to walk. In the hospital they gave me Prednisone 35-40 mg and an hour later, I felt such relief. Over these past months I've tapered down to 2mg last week and then to 1mg three days ago. Suddenly I'm in pain all in my legs, arms and back. I upped to 2mg but no relief yet. The strange thing is how extremely tired I've become in the mornings and the pain doesn't subside till late afternoon. Just wondering if anyone else has experienced this?

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Profile picture for Howdy! @kereno

Meg, you are a fount of wisdom. I like that split dose approach. I am going to try it.
(An aside: if you are a rose aficionado, what’s the name of the rose in your emblem? No answer needed if not known.)

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I can't take credit for the split dose idea - I started doing it after reading this forum where others had done it with good results. And some studies have found it helpful for morning pain control too. Apparently, the majority of the dose should still be taken in the morning to more closely mimic the body's own cortisol production.
(No, I can't tell you which variety of rose it is. I found it in a search for something like "beautiful rose".)

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Profile picture for megz @megz

I can't take credit for the split dose idea - I started doing it after reading this forum where others had done it with good results. And some studies have found it helpful for morning pain control too. Apparently, the majority of the dose should still be taken in the morning to more closely mimic the body's own cortisol production.
(No, I can't tell you which variety of rose it is. I found it in a search for something like "beautiful rose".)

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Morning pain control is more important than mimicking how cortisol is regulated by the body.

Prednisone interferes with the normal functioning of the HPA axis. Some of the things our bodies do are impossible to duplicate or even closely mimic. The way the body regulates cortisol levels and inflammation is impossible to replicate with any exogenous glucocorticoid.

Endocrinologists prefer hydrocortisone for adrenal insufficiency because it is the pharmaceutical form of cortisol. However hydrocortisone is taken 2 or 3 times per day because the half-life is short ... the same as cortisol. Maintaining more consistent cortisol levels throughout the day is as important as attempting to mimic the circadian rhythm.

I think a split dose of prednisone is more useful at higher doses. It is a shock to the HPA axis to get a surge of prednisone every morning when a smaller dose might adequately regulate the inflammation. Unfortunately, the regulation of inflammation decreases after approximately 16 hours according to the half-life of prednisone. The way Prednisone is metabolized is different depending on the person and other factors. Some people are good for 36 hours with a single morning dose,

When the anti-inflammatory effects of Prednisone starts to wane --- the inflammation surges again.

I took very high doses of Prednisone for uveitis. To a certain extent, I knew if the inflammation inside my eye was "better or worse" on an hourly basis. I could adjust my dose accordingly.

I noticed the uveitis inflammation improved throughout the day after my morning prednisone dose but it didn't all go away. When I slept, the inflammation was dramatically worse the next morning. Each day was like starting over with another high dose of Prednisone.

When I spit my prednisone dose, the uveitis inflammation still improved during the day. However, when I took a smaller dose in the evening the improvement carried over to the next day. From one day to the next there was steady improvement.

Steady improvement is better than the roller-coaster effect of a high prednisone dose followed by high levels of inflammation. Granted this was for uveitis when 60 to 100 mg and tapering back to zero was routine for me. I would be the first to admit that I had no clue what to do for PMR.

I don't think a split dose is needed at lower levels of inflammation as long as a single small dose in the morning is sufficient to regulate the inflammation. Lower Prednisone doses aren't too much of a shock to the system. However, if it works for someone ... that is more important than my opinion.

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Profile picture for allinge @allinge

Can anyone suggest if taking magnesium supplements while taking prednisone is beneficial? If so, how many mg would you recommend for women?

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I take Magnesium Glycenate as recommended by my PCP before we knew I had PMR. I can't say if it helps with PMR. I can say that my journey from 20mg in early December 2024, down to 4mg where I am now (July 6th), has been remarmakably good compared to what I read here about other members' statements. It is only very recently that I am having slight PMR symptoms when I get up in the AM. In addition, I was not sleeping well prior to taking Magnesium Glyenate and now I pretty much sleep though the night. Overall, magnesium is supposed to be very good to take. I will continue to take it even when I no longer have PMR.

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Profile picture for megz @megz

Sounds like a good plan. Best to move back to your last effective dose of 6mg (split dose) to hopefully avoid pain/inflammation settling in and inviting a flare which could require a bigger increase.

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While I am not experienceing flare-ups, but for thr the first time I am experienceing some light PMR disconfort in the usual places. I do a 15 minite arobic video which seems very helpful to me in easing those PMR symptoms..
https://www.google.com/gasearch?q=1%20mile%20%2Bheart%20%2Bhealthy%20%2Bwalk&source=sh/x/gs/m2/5

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I tapered down to 2 mg as well. My rheumatologist suggested I try 1.5mg. I tried for 2.5 weeks but like you I was extremely fatigued, my hands were swelling again & pain in my back & neck. I am back up to 2 mg for the past couple,of days, feeling better, the fatigue & pain is definitely less but my hands are still swollen & stiff in the morning.

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My PCP recommended it along with vitamin D and B12. I took prednisone for a year and finished two weeks ago. Yeah I am tired and my leg muscles feel tiered and achy but exercise and stretching seem to really help. Cheers.

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I agree a little exercise does help . Like you I finished prednisone after 18 months and finished a week ago . Yeah I am tired and pains in legs but I’m determined to fight back .
Good luck

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I am down to 1mg per day with no pain but I find it very difficult to get to sleep because I just can not get comfortable. Which ever side is facing the bed starts to ache after a few minutes. Tylenol helps but doesn't get me through the entire night. Anyone else have similar ?

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Profile picture for jedhorovitz @jedhorovitz

I am down to 1mg per day with no pain but I find it very difficult to get to sleep because I just can not get comfortable. Which ever side is facing the bed starts to ache after a few minutes. Tylenol helps but doesn't get me through the entire night. Anyone else have similar ?

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I had the same problem. I started taking two Tylenol Arthritis 650 mg tablets. I get 7-8 hours of goid sleep before my hip aches so bad I have to get up.

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