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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Mentor
John, Volunteer Mentor | @johnbishop | Feb 16, 2023
In reply to @saltyg "I previously taken Prednisone at night for my Ankylosing Spondylitis and now for PMR (recently dx)...." + (show)
@saltyg

I previously taken Prednisone at night for my Ankylosing Spondylitis and now for PMR (recently dx).
I have not had sleep disturbances and I track my sleep pretty religiously, including quality. Basically as someone said if it works for you.

I based my decision to do it on a study. I can’t post link here but try searching “nighttime-prednisone-could-address-morning-stiffness-ra”

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Hi @saltyg, I would like to add my welcome to Connect along with @pkalkstein and others. You should be able to post links in a few days. New members are not able to post links for a short period of time to prevent spammers from posting in the discussion. I'm glad to see that @pkalkstein has shared the link for you.

Thanks to both of you for sharing this information and your experience of taking prednisone at night. It really is helpful for other members that are struggling with managing the PMR symptoms.

REPLY
DadCue | @dadcue | Feb 16, 2023
In reply to @saltyg "I previously taken Prednisone at night for my Ankylosing Spondylitis and now for PMR (recently dx)...." + (show)
@saltyg

I previously taken Prednisone at night for my Ankylosing Spondylitis and now for PMR (recently dx).
I have not had sleep disturbances and I track my sleep pretty religiously, including quality. Basically as someone said if it works for you.

I based my decision to do it on a study. I can’t post link here but try searching “nighttime-prednisone-could-address-morning-stiffness-ra”

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I have reactive arthritis and uveitis which were diagnosed about 20 years before PMR was introduced to me. Reactive arthritis and uveitis are part of the "spondylitis family" of autoimmune disorders just like Ankylosing Spondylitis.

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1 reply
saltyg | @saltyg | Feb 16, 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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That’s amazing so glad you had a good result @pkalkstein !

REPLY
saltyg | @saltyg | Feb 16, 2023
In reply to @dadcue "I think the split dose worked the best for me. Approximately 2/3 of my dose in..." + (show)
@dadcue

I think the split dose worked the best for me. Approximately 2/3 of my dose in the morning when I woke up and 1/3 of my dose in the evening before going the bed was really good. My overall pain relief and being able to sleep during the night was best when I did it that way. The pain was always there but it was better depending on the way I took prednisone. When things improved, I took my whole prednisone dose in the morning when I woke up.

Much of what I learned about prednisone dosing was because of having uveitis. I told my ophthalmologist that I could "see inflammation" inside my eye. My ophthalmologist would verify the presence of inflammation inside my eye during his exam.

My ophthalmologist would quiz me about how much inflammation there was and whether it was getting worse, better or staying the same. No lab work was done to determine how much inflammation was present. In any case, my ophthalmologist and I were always in agreement and terms of the presence of inflammation inside my eye (uveitis), how much inflammation there was, and whether or not the inflammation was getting better.

I described the inflammation inside my eye as being like fog. Prednisone worked like the sun in the morning causing the fog to dissipate as the day progressed. I would adjust my prednisone dose based on how the fog was clearing. My vision was foggy all day long sometimes depending on my prednisone dose. It really helped me decide how much prednisone was needed to achieve the desired result-remission of uveitis.

When I first started having uveitis, I needed frequent ophthalmology visits about every 3 days until the uveitis improved and eventually stopped. I got so good at starting prednisone and tapering off to achieve remission that my ophthalmology visits were reduced to 2 visits. The first visit was to verify that I had uveitis and the second visit was to confirm remission. Remission of the inflammation inside my eye was described by my ophthalmologist as "clear and quiet."

PMR was a different challenge because I had no way of knowing how much inflammation there was.

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Interesting I have had chronic uveitis associated to Ankylosing Spondylitis and could only control it with Medrol packs. This was prior to AS dx and starting biologics. Now back on prednisone for PMR. ☹️

REPLY
1 reply
saltyg | @saltyg | Feb 16, 2023
In reply to @dadcue "I have reactive arthritis and uveitis which were diagnosed about 20 years before PMR was introduced..." + (show)
@dadcue

I have reactive arthritis and uveitis which were diagnosed about 20 years before PMR was introduced to me. Reactive arthritis and uveitis are part of the "spondylitis family" of autoimmune disorders just like Ankylosing Spondylitis.

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Yes it’s fun times lol….not. I try my best with lifestyle management it’s like a full time job on top of my full time job…but for me the medicine is still necessary. Thanks for sharing.

REPLY
DadCue | @dadcue | Feb 16, 2023
In reply to @saltyg "Interesting I have had chronic uveitis associated to Ankylosing Spondylitis and could only control it with..." + (show)
@saltyg

Interesting I have had chronic uveitis associated to Ankylosing Spondylitis and could only control it with Medrol packs. This was prior to AS dx and starting biologics. Now back on prednisone for PMR. ☹️

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We should compare notes sometime. My uveitis was "steroid responsive." It was also called "severe" and "aggressive." My ophthalmologist didn't hesitate starting 60 mg of prednisone as soon as I reported another flare of uveitis. He just wanted to verify it was autoimmune uveitis and not caused by an infection or something else.

The steroid eye drops and low dose prednisone didn't work for my early flares of uveitis. I would just work my way up to 100 mg of prednisone with the fear of going blind in my left eye. For some reason my right eye was spared the whole ordeal. I only had "mild flares" in my right eye and not very often. My left eye has had severe flares more than 30 times -- once or twice per year for 20 years.

When I was diagnosed with PMR, I stopped having flares of uveitis. Taking prednisone daily seemed to prevent uveitis. The problem was that I needed 30 to 40 mg daily for nearly 10 years before I was able to gradually maintain things with 15 mg of prednisone. I was a long way from getting down off prednisone I took prednisone daily for a total of 13 years to treat PMR. I personally think it was a combination of many things.

My rheumatologist decided that I was "too young" to take prednisone for the rest of my life. My first biologic ever was Actemra just 4 years ago just to see if it would work for PMR. It worked fantastic for PMR but as soon as I tapered off prednisone I had a massive flare of uveitis. My ophthalmologist wanted me on Humira which didn't seem to work for PMR because I needed to stay on 15 mg of prednisone again.

Things turned out when I was switched back to Actemra with more frequent injections. I have also done monthly infusions of Actemra. So far, everything as been well controlled. I have been off prednisone for the past 3 years.

REPLY
saltyg | @saltyg | Feb 17, 2023

Oh yes, much of this sounds familiar. I had uveitis on and off for about eight years (about 6-7 times) before being diagnosed with AS. The eye specialist would always question if I had some sort of auto immune condition, but at that point, it had not been identified. My uveitis was also very responsive to oral steroids and nothing else . The drops alone never stopped it. I always had to ultimately go to steroids, orally. If it were to happen again I would start there.
Once I was diagnosed with AS, and started taking Biologics I never had uveitis again, except for one time. Where we thought I was in remission and was off my Biologics, and then had the worst bout ever. So I seem destined to be on Biologics forever because I don’t want to loose my sight. And only certain Biologics prevent uveitis flares.
By the way, my uveitis has only affected my right eye.

REPLY
saltyg | @saltyg | Feb 17, 2023

@dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).

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2 replies
DadCue | @dadcue | Feb 18, 2023
In reply to @saltyg "@dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best..." + (show)
@saltyg

@dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).

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Are you still taking Enbrel for AS and uveitis?

Are you also taking prednisone for PMR? What dose of prednisone?

Actemra is working for me. After PMR was diagnosed, I was never able to taper off prednisone. I took prednisone for PMR daily for 13 years! Uveitis stopped happening for 13 years except for a couple of mild flares. Not having flares of uveitis was nice but moderately high doses of prednisone without being able to taper off wasn't so nice. Pain was constant but tolerable if I took enough prednisone.

My rheumatologist was certain about the PMR diagnosis in the beginning. As the years went by, she started calling my problem "systemic inflammation" or a "full range of things." She said I had a "history of" reactive arthritis and uveitis but I don't think those things ever went away. At first, my rheumatologist said I was unfortunate to have both PMR and reactive arthritis.

When Actemra worked so well, I tapered off prednisone in 7 months for the first time in 13 years. It would have been sooner except for having adrenal insufficiency caused by long term prednisone use. Adrenal insufficiency symptoms lasted about a year after I got off prednisone completely.

As soon as I tapered off prednisone the first time, I had a major flare of pan-uveitis but no pain. My ophthalmologist put me back on 60 mg of prednisone and wanted me on Humira. From my ophthalmologist's point of view, Humira was optimal to prevent uveitis.

Humira might be good for uveitis but it didn't seem to keep PMR pain from happening. It was my choice to go back on Actemra and Humira was stopped. It took 3 months to taper off prednisone the second time when Actemra was restarted.

My ophthalmologist said uveitis would likely recur if I was on Actemra. So far, that hasn't happened except for once. However, that uveitis was called a "traumatic uveitis" and not autoimmune related.

If the autoimmune type of uveitis happens again, I will gladly take prednisone for a month or two in order to put uveitis in remission. I just don't want to take prednisone again for years and years. I have been completely off prednisone for 3 years and counting.

REPLY
DadCue | @dadcue | Feb 18, 2023
In reply to @saltyg "@dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best..." + (show)
@saltyg

@dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).dadcue For biologics I started with Remacaid/Methotrexate, Humira and now Enbrel (which has worked the best I think).

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I should say that I have been off prednisone for 3 years except for when Actemra wasn't available. Actemra was being used to treat severely ill covid patients. It was difficult to get Actemra for about 6 months due to the supply chain issues. I needed to go back on prednisone until supplies of Actemra improved. I needed prednisone again that time too. After Actemra was restarted for the 3rd time, I was able to taper off prednisone quickly once again.

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