1. < Polymyalgia Rheumatica (PMR)

Taking prednisone before sleep.

Posted by frenchfrank51 @frenchfrank51, 4 days ago

Has anyone tried taking prednisone in the evening rather than in the morning as is usually recommended?

I'm a couple of months down the PMR treatment with prednisone route, starting at 60 mg and now down to 8mg per day. At this level, the pain which was mostly being kept at bay, is returning. Shoulders, knees, feet. Elbows, hands and fingers are beginning to start hurting again.

Recently I've been splitting my 8mg dose to 4mg in the morning and 4mg with my evening meal because, otherwise, by the time I get to bed the pain relief from just the morning dose has worn off and I have a difficult night's sleep because of pain.

Yesterday I thought that if I continue losing sleep like this I'll make everything worse because of sleep deprivation. So, I skipped the morning dose and took the 8mg with my evening meal. Got to say, I think I slept a lot better because the pain relief lasted through the night so I wasn't tossing and turning, trying to find a position that wasnt so painful all night long. And, I think I feel slightly calmer this morning so far and feel more like getting something done today. Plus, when I've been taking the morning dose my vision has been awful, blurred, can't focus and everything seems way too bright. If I'm asleep when that would normally kick in, it wouldn't matter.

I'm sure I'll crash again at some point soon but I'm probably going to take one evening dose for a few days to see if it really makes it difference.

Unless anyone advises me against it long term. Perhaps it's also worked for others?

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jeff97 | @jeff97 | 4 days ago

It sounds like your dose of prednisone might be too low to control your symptoms. I know from previous posts that you're also taking Actemra, but maybe the Actemra hasn't taken full effect yet. I can't speak to the effectiveness of taking prednisone before bedtime.

Your description of vision problems is concerning. I have GCA that included vision problems, so I know how dangerous that can be. Have you checked with an ophthalmologist about your vision problems? Those symptoms sound like they could be GCA or cataracts.

REPLY
1 reply
tuckerp | @tuckerp | 4 days ago

I agree with Jeff97. I doubt whether your taking enough of the steroid. 2 months is not a very long time to go into remission. If you are taking Actemra that can take up to 6 months to start helping. Actemra does not work for everyone. You may have to try something else. The Dr. must have suspected GCA if you started at 60mg . That is a pretty heavy dose to control PMR. You need to google "prednisone and circadian rhythm". After 2 weeks your body has quit making cortisol. The cortisol comes from the steroid. Your body is able to produce cortisol whenever you need it. Its used for most of your critical functions. You are now supplying just one predetermined dose. I switched to Dexamethasone. Cancer patients use it. The Dr did not want to but switched for me. 2mg of Dex is equivalent to 10mg prednisone. You adjust the dose accordingly. Dex has a longer half life. Blurry vision was one of my side effects of the prednisone. It does clear up. I was also not able to taper from 10mg prednisone for 5 months. Then over the 6 month tapered very quickly to zero. I felt I was pretty lucky. 2 months is not enough time.

REPLY
1 reply
frenchfrank51 | @frenchfrank51 | 4 days ago
In reply to @jeff97 "It sounds like your dose of prednisone might be too low to control your symptoms. I..." + (show)
@jeff97

It sounds like your dose of prednisone might be too low to control your symptoms. I know from previous posts that you're also taking Actemra, but maybe the Actemra hasn't taken full effect yet. I can't speak to the effectiveness of taking prednisone before bedtime.

Your description of vision problems is concerning. I have GCA that included vision problems, so I know how dangerous that can be. Have you checked with an ophthalmologist about your vision problems? Those symptoms sound like they could be GCA or cataracts.

Jump to this post

Thanks Jeff.

You're probably right and 8mg is not enough to see me through a 24 hour period. I suppose I'll have to increase it a little again and see if that helps.

I definitely think I felt better today at times by taking one dose last night but I do keep crashing intermittently which feels awful.

I started on Actemra last week and injected again yesterday. So way too soon to make a difference of course.

I've had the tests for GCA after my PMR diagnosis and been told I definitely don't have it. I've had early signs of cateracts for a while but not bad enough yet to do anything about it. Apparently, prednisone can cause cateracts according to what I've read so, I imagine it will likely make existing cateract problems worse. It's not only blurred vision at the moment. It's sort of dizzy, spaced-out vision that makes things swim about in front of me. I've no idea what that is!

Many thanks for your help.

REPLY
2 replies
tuckerp | @tuckerp | 4 days ago
In reply to @frenchfrank51 "Thanks Jeff. You're probably right and 8mg is not enough to see me through a 24..." + (show)
@frenchfrank51

Thanks Jeff.

You're probably right and 8mg is not enough to see me through a 24 hour period. I suppose I'll have to increase it a little again and see if that helps.

I definitely think I felt better today at times by taking one dose last night but I do keep crashing intermittently which feels awful.

I started on Actemra last week and injected again yesterday. So way too soon to make a difference of course.

I've had the tests for GCA after my PMR diagnosis and been told I definitely don't have it. I've had early signs of cateracts for a while but not bad enough yet to do anything about it. Apparently, prednisone can cause cateracts according to what I've read so, I imagine it will likely make existing cateract problems worse. It's not only blurred vision at the moment. It's sort of dizzy, spaced-out vision that makes things swim about in front of me. I've no idea what that is!

Many thanks for your help.

Jump to this post

Thats how my vision seemed. There were times I could see very clearly. Then others were like opening your eyes under water. I also felt dizzy from it. I went to the eye Dr twice and nothing wrong. I have slight cataracts but like everything they say not bad for your age. I am 73. It all cleared up about 6-8 months after prednisone.

REPLY
1 reply
frenchfrank51 | @frenchfrank51 | 4 days ago
In reply to @tuckerp "I agree with Jeff97. I doubt whether your taking enough of the steroid. 2 months is..." + (show)
@tuckerp

I agree with Jeff97. I doubt whether your taking enough of the steroid. 2 months is not a very long time to go into remission. If you are taking Actemra that can take up to 6 months to start helping. Actemra does not work for everyone. You may have to try something else. The Dr. must have suspected GCA if you started at 60mg . That is a pretty heavy dose to control PMR. You need to google "prednisone and circadian rhythm". After 2 weeks your body has quit making cortisol. The cortisol comes from the steroid. Your body is able to produce cortisol whenever you need it. Its used for most of your critical functions. You are now supplying just one predetermined dose. I switched to Dexamethasone. Cancer patients use it. The Dr did not want to but switched for me. 2mg of Dex is equivalent to 10mg prednisone. You adjust the dose accordingly. Dex has a longer half life. Blurry vision was one of my side effects of the prednisone. It does clear up. I was also not able to taper from 10mg prednisone for 5 months. Then over the 6 month tapered very quickly to zero. I felt I was pretty lucky. 2 months is not enough time.

Jump to this post

Thanks tuckerp.
Thanks tuckerp for those explanations. You've obviously been dealing with this much longer than myself and what you've described helps me to get my head around it somewhat.

The reason, I think, I was started on 60mg was because I had a particularly bad spell of pain and stiffness over a day or two (on top of my usual levels of pain and stiffness caused by a fair amount of arthritis and tendon damage and muscle pain ) which meant I couldn't do anything at all without my wife helping me. Couldn't get out of bed, couldn't put my socks on, couldn't walk. No strength anywhere but a lot of pain. By chance, I'd had a lot of blood tests done just a day or two before which were so bad the laboratory rang me and told me to see my doctor ASAP. Amongst lots of blood markers being too high or too low than they normally are, my CRP was 178. So, something had to be done pretty quickly. No real reason for the hike in CRP was found or given. At the last blood test a week or so ago it's down to 17. GCA was tested for when PMR was diagnosed and it was dismissed....twice.

No doubt yourself and JEFF are probably correct about not being on high enough a dose and I'll have to go back up a notch or two. It won't be the first time even in my short time on prednisone.

I had my second weekly injection of Actemra yesterday so a long way to go yet with that. I do hope it does work.

Dexamethasone I've not heard of but about 2 years ago I was prescribed methotrexate by injection for my arthritis problems but only lasted 7 weeks. I felt so ill I had to stop but never knowing if the methotrexate was making me feel worse or whatever else I was already suffering from was just taking its toll. I Imagine those two drugs are similar.

I do get the impression my blurred vision was less of a problem this morning because I didn't take my prednisone dose with breakfast. I'll take it again with my evening meal and try 10mg this time. I suppose I'll soon know if it makes a difference.

Thanks again for your help.

REPLY
1 reply
jeff97 | @jeff97 | 4 days ago
In reply to @frenchfrank51 "Thanks Jeff. You're probably right and 8mg is not enough to see me through a 24..." + (show)
@frenchfrank51

Thanks Jeff.

You're probably right and 8mg is not enough to see me through a 24 hour period. I suppose I'll have to increase it a little again and see if that helps.

I definitely think I felt better today at times by taking one dose last night but I do keep crashing intermittently which feels awful.

I started on Actemra last week and injected again yesterday. So way too soon to make a difference of course.

I've had the tests for GCA after my PMR diagnosis and been told I definitely don't have it. I've had early signs of cateracts for a while but not bad enough yet to do anything about it. Apparently, prednisone can cause cateracts according to what I've read so, I imagine it will likely make existing cateract problems worse. It's not only blurred vision at the moment. It's sort of dizzy, spaced-out vision that makes things swim about in front of me. I've no idea what that is!

Many thanks for your help.

Jump to this post

Hopefully the Actemra will start helping you soon and you'll be able to start tapering the prednisone again.

I had mild cataracts before developing PMR and GCA, and they haven't changed any so far. I've been taking prednisone for 9 and a half months. I go to the ophthalmologist every 3 months to get my eyes checked. The last time I was there the pressure was up slightly in one eye, so that will have to be monitored. In addition to possibly making cataracts worse, the prednisone cause glaucoma.

REPLY
frenchfrank51 | @frenchfrank51 | 4 days ago
In reply to @tuckerp "Thats how my vision seemed. There were times I could see very clearly. Then others were..." + (show)
@tuckerp

Thats how my vision seemed. There were times I could see very clearly. Then others were like opening your eyes under water. I also felt dizzy from it. I went to the eye Dr twice and nothing wrong. I have slight cataracts but like everything they say not bad for your age. I am 73. It all cleared up about 6-8 months after prednisone.

Jump to this post

Yep, exactly the same with the vision and dizzyness and I match you exactly in age too. But, oddly, I've had similar issues with my vision before taking prednisone so who knows what's doing what?

REPLY
tuckerp | @tuckerp | 4 days ago
In reply to @frenchfrank51 "Thanks tuckerp. Thanks tuckerp for those explanations. You've obviously been dealing with this much longer than..." + (show)
@frenchfrank51

Thanks tuckerp.
Thanks tuckerp for those explanations. You've obviously been dealing with this much longer than myself and what you've described helps me to get my head around it somewhat.

The reason, I think, I was started on 60mg was because I had a particularly bad spell of pain and stiffness over a day or two (on top of my usual levels of pain and stiffness caused by a fair amount of arthritis and tendon damage and muscle pain ) which meant I couldn't do anything at all without my wife helping me. Couldn't get out of bed, couldn't put my socks on, couldn't walk. No strength anywhere but a lot of pain. By chance, I'd had a lot of blood tests done just a day or two before which were so bad the laboratory rang me and told me to see my doctor ASAP. Amongst lots of blood markers being too high or too low than they normally are, my CRP was 178. So, something had to be done pretty quickly. No real reason for the hike in CRP was found or given. At the last blood test a week or so ago it's down to 17. GCA was tested for when PMR was diagnosed and it was dismissed....twice.

No doubt yourself and JEFF are probably correct about not being on high enough a dose and I'll have to go back up a notch or two. It won't be the first time even in my short time on prednisone.

I had my second weekly injection of Actemra yesterday so a long way to go yet with that. I do hope it does work.

Dexamethasone I've not heard of but about 2 years ago I was prescribed methotrexate by injection for my arthritis problems but only lasted 7 weeks. I felt so ill I had to stop but never knowing if the methotrexate was making me feel worse or whatever else I was already suffering from was just taking its toll. I Imagine those two drugs are similar.

I do get the impression my blurred vision was less of a problem this morning because I didn't take my prednisone dose with breakfast. I'll take it again with my evening meal and try 10mg this time. I suppose I'll soon know if it makes a difference.

Thanks again for your help.

Jump to this post

Methotrexate is a classed as a DMARD. Used primarily for Rheumatoid Arthritis. The newer biologics such as Actemra are now being prescribed for PMR. Corticosteroids have several different strengths. Dexamethasone is the strongest at about 1mg equals about 5-6mg prednisone. Prednisone is converted to prednisolone in the liver. So they are the same. Hydorcortisone is about 5 times less potent than prednisone. Hydrocortisone is what they move you to if you need a steroid for life. Many people have trouble with DMARDs being effective.

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