Conflict with Rheumatologist over taking Prednisone for PMR in AM/PM
I was diagnosed with PMR 4 weeks ago and when I first started I was taking Prednisone at various times of the day and what I discovered was that it worked perfectly for me when I took it in the evening a few hours before bedtime. If I took the same dose in the AM instead, I would wake up with pain and stiffness that I would not have ,had I taken in at night. The rub is my doctor is trying desperately for me to take all in the AM or split dosage in AM and PM. It’s frustrating when my body is telling me smaller PM dosages work perfectly. WHY SO MUCH PUSH BACK? Does anyone else take it at night?
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I can hardly understand it from my own experience so no, I can't answer those questions.
From my own personal experience, my PMR pain and stiffness was the worst at 3 a.m. The pain woke me up so I took Prednisone at 3 a.m. I suspect my cortisol level was too low during the night.
I was still working and I needed to be at work at 7 a.m. I needed to make a decision at 3 a.m. about calling my employer to let them know if I was able to work or not. I could hardly move at 3 a.m. If I took Prednisone at 3 a.m., by the time 7 a',m. rolled around, I was ready to go to work at 7 a.m.
I doubt many doctors will tell their patients to take Prednisone at 3 a.m. However, they do say to take it when you wake up in the morning.
I only took a small portion of my Prednisone dose in the evening before going to bed. That was so I wouldn't wake up in pain at 3 a.m. I think it worked because my cortisol level wouldn't get so low during the night.
I did what I needed to do but that does not mean it will work for someone else. For the most part, my doctors didn't care when I took Prednisone as long as it was relieving the pain.
My doctors were only concerned about how much and how long I was taking Prednisone.
I was diagnosed about 14 months ago and am still trying to get off prednisone. But initially I was prescribed only a morning dosage, and all symptoms came back within a week of the first taper to a lower dosage. Since then, my rheumatologist recommended that I split my dosage evenly in the morning and evening. This kept me pain-free until I was down to about 2-3 mg daily. Then (February this year) my doctor got me onto methotrexate, which I've been on since, along with a new taper schedule for prednisone. I'm currently down to 1 mg prednisone daily (0.5 in morning, 0.5 in evening), along with 15 mg methotrexate on Saturdays (7.5/7.5), and I'm still pain-free at the moment. Hopefully the next few weeks go well. But for me, splitting my daily dosage has been a key to my recovery.
Your comments are exactly right. I think it must be pretty tough for the Dr to try and make a medication to fit. Thats why a DR - patient relationship is important. But its hard to get that anymore. I was able to take in the morning and sleep all night. I think lots of people on here are able to do that. However, there is a significant amount that cannot do that. Then they are searching for sleep medication. Before long your Dr is prescribing more medication. Sort of becomes like Michael Jackson. Prednisone , besides producing cortisol has an inflammation blocker. I think Brian1950 said his Dr was fine with splitting the dose. Dr said taking it all at night was not. Just my thoughts.
Prednisone reduces inflammation levels whenever we take it. However, prednisone doesn't stay in the body very long so people need a daily dose. You may or may not have enough prednisone for an entire 24 hours. If a person's prednisone dose is too small then inflammation isn't reduced enough. Too much prednisone isn't good either
When the adrenals and HPA axis are working correctly, a person's cortisol level is regulated. Cortisol levels are regulated so the body gets what it needs - it gets cortisol whenever it needs it -- in real time -- almost instantly. Having too much cortisol and/or not enough cortisol is all prevented when the HPA axis is functioning well.
The HPA axis can get out of balance and needs to be reset somehow. I don't think prednisone is the answer because it throws a wrench into the works and shuts down the HPA axis.
Basically, I think Actemra reset my HPA axis by contolling my inflammation without suppressing my adrenals. Does this explain how I got past adrenal insufficiency?
Unfortunately, Actemra won't address the problem with "immune system memory." My rheumatologist says my immune system isn't likely to forget about what it has been attacking for so many years. That is why I need to continue taking Actemra because my immune system will continue to attack me. Actemra seems to be blocking the excess inflammation caused by PMR but when I stop Actemra, the inflammation returns. However, I feel much better because my adrenals aren't being suppressed by Prednisone any longer.
Now I can exercise and handle stress better because my body is getting the cortisol it needs. I'm not having the inflammatory flares anymore when my need for cortisol needs to increase. I guess that explains why cortisol is the "stress hormone."
Prednisone only works for the length of time it stays in the body before it is eliminated.
A monthly infusion of Actemra works for an entire month or until the IL-6 receptors aren't blocked sufficiently. I guess that is when the pro-inflammation effects higher levels of IL-6 start to return and the pain increases again.
Whatever the explanation. I am just grateful Actemra seems to work! The conflict about how much Prednisone I should take is not an issue for me anymore.
Hi. Interesting. When I began pred I was put on the DD (divided dose). It worked well for a few weeks, but then I began to have difficulty getting to sleep and staying asleep. It became a very huge problem. My rheumatologist then suggested trying most in the morning, and the rest at night at a ratio (not mg) of 75/25, 80/20, 90/10.
The 90% am dose works for me. And I sleep much better. I think we need to get it right for ourselves. Many docs can't get over that we actually have a brain. 😉
"Prednisone only works for the length of time it stays in the body before it is eliminated."
Exactly. Barely 24 hours. I think that's why a split dose is effective. The ratio is different for each of us.
I'm impressed that your rheumatologist said to try different ratios to see what works for you.
I split my dose 2/3 in the morning and 1/3 in the evening when I needed to because of pain in the early morning hours. I agree that the ratio might be different for someone else.
Being unable to sleep at night was a problem for me when I started on 60 mg. When I took all of it in the morning I had to increase my dose to 100 mg. It was just a very high dose but my ophthalmologist said I needed that much. I wasn't able to decrease that dose until my dose was split. Splitting my dose allowed me to decrease my total daily dose.
My rheumatologist was more about a "stable dose" meaning I should take the same total dose every day regardless of whether I split my dose or not. She would get upset when I had to increase my dose and pleaded with me not to do that. Only when my symptoms were stable was I told to decrease my dose.
When I split my dose, I was able to take less Prednisone and I slept better!
I can only speak from 50 plus years of being on and off prednisone. The doctors will tell me to split my doses into am and pm. But what worked better for me was to take it all in one am dose, and my doctor said this was ok. It had all day to work, I had more energy and no pain or breathing problems ( I also took it for my asthma on occasion) which was good since I was working full time! A pm dose left me with horrible insomnia! I had major sleep problems which were not good when I was a full time, working mom! I did wake up with some pain, but I would eat a meal and take my predisone and it goes to work quickly enough for me.
Everyone is different, though. I wish you the best on your health journey.
Hello, my name is Kas and I have Polymyalgia. It was discovered while I was in the hospital with an attack and it sent my A-fib over the wall. They were only trying to get my A-Fib under control because they didn't know why I was hurting so much in my jaw, hand and fingers and both shoulders. I went to the hospital 2 times before they discovered that Prednisone helped me get out of the pain that I was in, and told me to see a Rheumatologist. I went and she has me on Prednisone. When I get a bout I have to take 5 ml - 3 times a day for 3 days.....2 x a day for 3 days and finally 1 until I see her again. I have read about this drug and I know it has consequences and a long time to get out of your system if you stop. I was always told to not take it before bed time because it can keep you awake and anxious. If I have to I do not take it past 6:oop.m. I have also been on Amazon and bought a shoulder brace and wrist brace which help me greatly when I have these bouts. Get the ones that are only around $16-20.00.....don't spend a lot of money that you do not have to. Also get the ones that work for both right and left side of your body, so that you do not have to buy 2 of each. I also am having very low blood pressure and dizziness. Don't know why.
Yep - same here in that I read about the split dose in this forum !
@brian1950 my understanding was that taking Prednisone in evening (might) interfer with your sleep and that is the concern my Rheumatologist projected to me ! My cousin took all his dose at night. I had a terrible flare up when taking all the dose in am . keep a pain journal of time of day of your dose etc . those data should convince your doctor !