Pain at night

Posted by s1m @s1m, 2 days ago

I started this journey in mid June and am currently on 12.5 mg of Prednisone. For the most part, daytime is fine. However, when I am still for a stretch of time, like nighttime sleeping, I get stiffness and pain in the upper arms once again. I find I have to make some movement with my hands to 'awaken' the arm muscle and reduce any pain. Is this normal? Or is Prednisone supposed to take care of pain all day and all njght?

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I'm not telling you what to do. Prednisone does not stay in your system for a full 24 hours regardless of what dose you take. Prednisone typically clears the bloodstream in about 16 to 22 hours

Have you tried splitting your dose while keeping your total dose the same? It is usually recommended that you take your entire 12.5 mg dose in the morning. However, saving a small portion of your dose for the evening might prevent the pain at night. You might want to try 10 mg in the morning and 2.5 mg in the evening. This will keep your total dose the same.

My doctor didn't have any problem with me splitting my dose up if it helped to relieve the pain at night. I was told spitting up my dose was far better than taking a higher dose of prednisone. Some other doctor might tell you not to split your dose and they would rather prednisone be taken all in the morning when you wake up.

The following rheumatolgist mentions that it is "reasonable" to split your dose for pain at night. She mentions it at the 4 minute mark of the video but the whole video is worth watching. I like that she admits that there is NO gold standard for tapering off prednisone.

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Profile picture for Mike @dadcue

I'm not telling you what to do. Prednisone does not stay in your system for a full 24 hours regardless of what dose you take. Prednisone typically clears the bloodstream in about 16 to 22 hours

Have you tried splitting your dose while keeping your total dose the same? It is usually recommended that you take your entire 12.5 mg dose in the morning. However, saving a small portion of your dose for the evening might prevent the pain at night. You might want to try 10 mg in the morning and 2.5 mg in the evening. This will keep your total dose the same.

My doctor didn't have any problem with me splitting my dose up if it helped to relieve the pain at night. I was told spitting up my dose was far better than taking a higher dose of prednisone. Some other doctor might tell you not to split your dose and they would rather prednisone be taken all in the morning when you wake up.

The following rheumatolgist mentions that it is "reasonable" to split your dose for pain at night. She mentions it at the 4 minute mark of the video but the whole video is worth watching. I like that she admits that there is NO gold standard for tapering off prednisone.

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@dadcue I split too

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Profile picture for tweetypie13 @tweetypie13

@tweetypie13

I don't know why some doctors are so adamantly opposed to a split dose. I think at doses greater than 10 mg of prednisone the HPA axis will be suppressed no matter how you take prednisone. I think less prednisone was needed when I didn't wake up in pain no matter what time it was in the morning.

When pain woke me up in the middle of the night and I couldn't go back to sleep --- that just made me miserable.

REPLY
Profile picture for Mike @dadcue

I'm not telling you what to do. Prednisone does not stay in your system for a full 24 hours regardless of what dose you take. Prednisone typically clears the bloodstream in about 16 to 22 hours

Have you tried splitting your dose while keeping your total dose the same? It is usually recommended that you take your entire 12.5 mg dose in the morning. However, saving a small portion of your dose for the evening might prevent the pain at night. You might want to try 10 mg in the morning and 2.5 mg in the evening. This will keep your total dose the same.

My doctor didn't have any problem with me splitting my dose up if it helped to relieve the pain at night. I was told spitting up my dose was far better than taking a higher dose of prednisone. Some other doctor might tell you not to split your dose and they would rather prednisone be taken all in the morning when you wake up.

The following rheumatolgist mentions that it is "reasonable" to split your dose for pain at night. She mentions it at the 4 minute mark of the video but the whole video is worth watching. I like that she admits that there is NO gold standard for tapering off prednisone.

Jump to this post

@dadcue This is very helpful! Thanks!

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My rheumatologist was adamantly opposed to splitting my prednisone dose. During my taper I started 3mg LDN which I still take at night. I think that helps me sleep.

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Profile picture for kjoed53 @kjoed53

My rheumatologist was adamantly opposed to splitting my prednisone dose. During my taper I started 3mg LDN which I still take at night. I think that helps me sleep.

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@kjoed53 LDN?

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@s1m
Low dose naltrexone. It's only available from a compounding pharmacy, off label so not covered by insurance but is very inexpensive. I paid $110 for 90 day supply and there are less expensive options. I used a local compounding pharmacy for expediency.

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Profile picture for kjoed53 @kjoed53

My rheumatologist was adamantly opposed to splitting my prednisone dose. During my taper I started 3mg LDN which I still take at night. I think that helps me sleep.

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@kjoed53

I think more doctors would be adamantly opposed to LDN compared to splitting a prednisone dose. At least my doctor was opposed when I mentioned LDN..

I'm not opposed to LDN as long as it works for you. Many patients report that it works for "chronic pain" ---see Figure #1 in the following link.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/
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I don't think any research has been done for LDN specifically as a treatment for PMR. Of course, the research hasn't been submitted to the FDA for Actemra to be used to treat PMR either. Actemra can be used "off label" for PMR and it works for me. I wouldn't dare say LDN won't work for someone else.

I only have a bit of a problem when people claim prednisone is the "best option" or the "only option" for PMR. I kind of think prednisone won't be the "mainstay treatment" for PMR much longer in the USA at least---I could be wrong.

The thought that prednisone is the "only option" is why nothing has changed in the treatment of PMR for more than 50 years. When a person told me that doctors in the USA were "breaking the rules" for treating PMR with Actemra, they weren't very suportive. They were more supportive of me taking prednisone for the rest of my life.

REPLY
Profile picture for Mike @dadcue

@kjoed53

I think more doctors would be adamantly opposed to LDN compared to splitting a prednisone dose. At least my doctor was opposed when I mentioned LDN..

I'm not opposed to LDN as long as it works for you. Many patients report that it works for "chronic pain" ---see Figure #1 in the following link.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/
-----------------
I don't think any research has been done for LDN specifically as a treatment for PMR. Of course, the research hasn't been submitted to the FDA for Actemra to be used to treat PMR either. Actemra can be used "off label" for PMR and it works for me. I wouldn't dare say LDN won't work for someone else.

I only have a bit of a problem when people claim prednisone is the "best option" or the "only option" for PMR. I kind of think prednisone won't be the "mainstay treatment" for PMR much longer in the USA at least---I could be wrong.

The thought that prednisone is the "only option" is why nothing has changed in the treatment of PMR for more than 50 years. When a person told me that doctors in the USA were "breaking the rules" for treating PMR with Actemra, they weren't very suportive. They were more supportive of me taking prednisone for the rest of my life.

Jump to this post

@dadcue
Prednisone is the cheapest option so insurance loves it. The reason for so few alternatives is that there's no money in it as long as the cheap option is effective, which it usually is. My rheumatologist laid out his reasoning for not splitting prednisone and it made perfect sense to me, but don't ask me to remember why.

LDN has been studied for fibromyalgia more than other disorders, but it reduces inflammation and pain. It is also being prescribed for off label use for Crohn's, MS, RA and chronic pain and fatigue. I think any doctor who considers it is both confident and informed. For me it's a bridge from prednisone to kevzara. It's not going to replace prednisone but it might help people take lower doses, and it is perfect to take at night a couple of hours before bed.

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