PMR, prednisone and Poor Sleep or Insomnia

Posted by shonnie @shonnie, Feb 20, 2022

Hi
I was diagnosed with PMR Jan 3 and I am on 20mg prednisone. I have terrible insomnia that seems to only be helped by Tylenol PM which I don't want to take everyrnight. Last night I tried tea with Valerian and it worked pretty well. I didn't feel groggy at all in the morning. Now I have read that it might not be good to mix with prednisone. Does anyone have an answer on taking it with prednisone. I will ask my doctor but not sure he will know.

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

@suetex

For me, the insomia was dose related. Only bothered me at higher levels- like for Crohn's flair. Which, thanks to LDN seem to be a thing of the past. Tried CBD oil briefly and had no effect. Of course, you have to wonder if you got a good one.

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I am thinking going to be taking LDN for issues of pain regarding PMR. Can you tell me how this medication has helped you?

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I had PMR but wasn't diagnosed yet. (4 years with a rheumy who didn't recognise it.) I had two types of pain and also Crohn's. I had tiny ulcers in my small intestine. The pain was typical PMR when I used my muscles but I also hurt when I didn't move, too. My GI doc didn't believe in LDN but the rheumy PA did so I got it from her. I started with 2mg and in two days my nonmoving pain was gone. In a couple of months my small intestine healed and the ulcers haven't come back. I started using it in May 2019 and my next colonoscopy was normal. I had to stop it in August 2020 when I had my hip replacement (I had to use opiates.) But in 3 weeks I noticed the all over pain was back so I went back to it in a hurry. It worked again. I have stayed on it and I finally got diagnosed in April 2021 so I use both pred and LDN, I am tapering now without incident and don't plan to do without it. I don't know if it will work for you, but it is worth a try. You might at least lower your pred.

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@cookiegirl1944

This is the same diagnosis I have with same issues regarding sleep.How much oil do you take and where can I get it?

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I will tell you what I am using but I didn’t buy it, a gift from my kind brother. I know this can be bought on Amazon. The maker is Solari hemp, 33mg and I’m taking it from small ampules. I just use one a night.

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@steph1939

I will tell you what I am using but I didn’t buy it, a gift from my kind brother. I know this can be bought on Amazon. The maker is Solari hemp, 33mg and I’m taking it from small ampules. I just use one a night.

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Do you take the equivalent of 33 mg each night or is that the size in the ampule?

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@suetex

I had PMR but wasn't diagnosed yet. (4 years with a rheumy who didn't recognise it.) I had two types of pain and also Crohn's. I had tiny ulcers in my small intestine. The pain was typical PMR when I used my muscles but I also hurt when I didn't move, too. My GI doc didn't believe in LDN but the rheumy PA did so I got it from her. I started with 2mg and in two days my nonmoving pain was gone. In a couple of months my small intestine healed and the ulcers haven't come back. I started using it in May 2019 and my next colonoscopy was normal. I had to stop it in August 2020 when I had my hip replacement (I had to use opiates.) But in 3 weeks I noticed the all over pain was back so I went back to it in a hurry. It worked again. I have stayed on it and I finally got diagnosed in April 2021 so I use both pred and LDN, I am tapering now without incident and don't plan to do without it. I don't know if it will work for you, but it is worth a try. You might at least lower your pred.

Jump to this post

I am starting LDN in a few days. Hoping it works as the 10 mg of Prednisone is not helping much and having to supplement with 1300 mg Tylenol. Yes, hoping it will allow me to get off the prednisone. During all this time you went undiagnosed and not on LDN or prednisone did yiu experience extreme fatigue? If so did it ever go away or lessen?

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@cookiegirl1944

Do you take the equivalent of 33 mg each night or is that the size in the ampule?

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That was the size in the ampule

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@cookiegirl1944

I am starting LDN in a few days. Hoping it works as the 10 mg of Prednisone is not helping much and having to supplement with 1300 mg Tylenol. Yes, hoping it will allow me to get off the prednisone. During all this time you went undiagnosed and not on LDN or prednisone did yiu experience extreme fatigue? If so did it ever go away or lessen?

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That's a hard question to answer for sure because I was not sleeping well because of the pain. I just know that the LDN made everything better. (Even 'though my muscle still hurt when I used them.) And when the LDN helped me heal my small intestine, I was really sold. I have a much high roughage diet than I could ever tolerate before.

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@suetex

That's a hard question to answer for sure because I was not sleeping well because of the pain. I just know that the LDN made everything better. (Even 'though my muscle still hurt when I used them.) And when the LDN helped me heal my small intestine, I was really sold. I have a much high roughage diet than I could ever tolerate before.

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with the poly myalgia did the LDN help with the muscle stiffness?

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I would have to say no, I don't think it did. But I have never been flexible.

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