Very new to PMR

Posted by jenimom @jenimom, Nov 25, 2023

I am weaning down and am currently in 15 mg prednisone, down from 40. Was doing good but 2 days ago started feeling aweful. I get up at 4:30 so I can get to work by 8:00. The pain is not really tolerable until mid afternoon. Does anyone take their prednisone at night? I am a nurse and I need to work

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Some of us split the dose, taking a smaller dose in the evening to get rid of morning pain. I started on 15mg and was told to take the lot in the morning. It didn't kill the morning pain, so after finding this forum which mentioned dose splitting, I tried 12.5mg in the morning and 2.5mg in the evening. No morning pain. Currently am taking 7mg a day - 5mg morning & 2mg evening. Still no morning pain.

It is apparently important to make sure the evening dose is quite a bit smaller than the morning one. Most prednisone should be taken when the body would normally produce most cortisol, which is first thing in the morning on waking.

A few here have said they take the full dose when they wake in the middle of the night so they are pain-free in the morning. There is research being done on slow release prednisone which is taken at bedtime and reaches peak level first thing in the morning, which mimics natural cortisol production and relieves PMR morning pain. It's not available in Australia but I don't know if it is available in other countries.

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Hello @jenimom, I would like to add my welcome to Connect along with @megz. I think you might find the following discussions helpful.

--- Taking prednisone dose, morning and evening: https://connect.mayoclinic.org/discussion/taking-prednisone-dose-morning-and-evening/
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

There is a study that discussed the topic which was kind of interesting. The one key I read is not to take the second dosage too late in the day. They mentioned around 8 am for the first and around 2 to 3 pm for the second dose .
— Timing of glucocorticoid administration: a cross-sectional survey of glucocorticoid users in an online social network for health: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5410988/

You might want to keep a daily pain/symptoms log along with the dosages for the day to see how it goes. Do you normally keep a daily pain and dosage log?

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I'm a retired nurse. I worked as a nurse for 10 years after being diagnosed with PMR at the age of 52. I retired from nursing at the age of 62. Waking up in pain at 3 a.m. made it hard to be ready to work at 7 a.m. Getting my entire dose on board at 3 a.m allowed me to be able to work at 7 a.m. I didn't need to call in sick very often. Waking up in pain at 3 a.m. wasn't ideal because I couldn't go back to sleep.

When I took my whole dose in the evening before bedtime, I slept the entire night but sometimes I had a hard time falling asleep.

A split dose allowed me to sleep the entire night and I wouldn't wake up in pain. When I took a smaller dose at bedtime, it was easier to fall asleep and I was still able to sleep the entire night without pain.

Just to keep things simple--- I took approximately 2/3 of my dose in the morning when I woke up usually at 6 a.m and 1/3 of my dose in the evening anytime after 6 p.m. It was easy when I was taking 15 mg because it was 10 mg in the morning and 5 mg in the evening.

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Coping with PMR while still actively working is all the more daunting. Assuming you have access to an experienced physician they should be responsive to your input.
If you need to split your dose at breakfast and dinner for
a short trial period that could help. Maintaining minimal disease activity with higher doses would expose you to more side effects in any case. It may be appropriate for you to consider a biologic that targets
IL-6 . I would research an anti inflammatory diet as well.
An adequate dose of melatonin at night can offer some
relief. Take your D3 and and famotidine. Hoping you can
have some control over your job description in nursing.
I was retired with my PMR. You will connect with others who have worked throughout their illness. We need our nurses.

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Good afternoon! I was trying to think of how best to help you by relating my experiences , and i knew there would be a great deal of advice about splitting the dose ! And i knew that @dadcue was a nurse ! I agree with @johnbishop about keep a pain journal or excel file heat map of your pain vs. dose . When you say you are new to PMR - how long did it take you to taper from 40mg to 15mg and by what amount ? For example - maybe you can try to increase again to 17.5mg using the split dose strategy. Then resume your tapering ? I was able to stay home, but only able to start computer work at about 2pm when my PMR management was suboptimal. And then i went on MEDICAL LEAVE ! If you need to get up , get dressed , feed the cat or kid ? AND drive to work you sure do need your PMR morning pain and stiffness to be under control !! You'll get there I,m sure - we've all been there !

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I just wanted to add that "pain at night" is a well known phenomena and not exclusive to PMR. Patients with post-op surgical pain always seemed to be in the most pain at night. It is a complicated subject but it has something to do with inflammation not being regulated well at night. Cortisol is the hormone that regulates inflammation.

There are many reasons why you might feel muscle aches at night and during the morning only. Common causes of pain at night include:
***Hormone levels – production of the anti-inflammatory hormone cortisol drops to its lowest point at around midnight, so this could see discomfort rise for certain ailments.***
The following link is easy to read and makes it understandable and also offers some suggestions.

https://www.health.harvard.edu/blog/do-we-feel-pain-more-at-night-202301182877
Prednisone at night isn't recommended but it will probably relieve your early morning pain. Prednisone replaces the cortisol our bodies should be making.

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Because I had just picked up the prednisone and could not wait to take it, i took my first dose at 4:30 pm and then continued that way. It worked out well for me.

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Have always take prednisone as soon as I get up allowing it about an hr to work seems to work well. I started at 20 mg in Aug now down to 5mg only minor aches that leave within hr or so of taking prednisone.

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katejaha Did you have weakness when tapering?

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I've had PMR since May. CRP of 140 down to 8. Pain almost gone. Pred dose from 60 to 7.5, currently. I've studied the disease religously for 6 months. I have been to several top autoimmune clinics and currently have an autoimmune specialist and am part of a global program geared towards healing the gut biome and healing the stomach wall lining. I'm happy to share my thoughts and experiences if you are interested.

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