1. < Polymyalgia Rheumatica (PMR)

Good days and bad days

Posted by lanieg @lanieg, Dec 31, 2022

Hi everyone
I was diagnosed a month ago with PMR. Woke up one morning and had extreme pain in both upper arms, shoulders and neck. Also in my right leg. Have since been on 20 mg prednisone per day and 100 mg 3x a day gabapentin. Both have helped but I find that I can have a good day with little pain and the next day I can barely walk or lift my arms. I've started a food journal to see if that's a factor. Has anyone else experienced this when first diagnosed? Thanks for your input.

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suetex | @suetex | Jan 3 11:12am
In reply to @npostusa "Hi, i have had my struggles with tapering prednisone and at certain levels of dosage. What..." + (show)
@npostusa

Hi, i have had my struggles with tapering prednisone and at certain levels of dosage. What I found is to go slow, stay on a regiment. For me, I averaged a drop of 1 mg took about a month to reduce. Each time I tapered my body would ache for a few days and then it would mellow out. My most recent drop (3mg) has been somewhat difficult. It has been about 4 days, but the 2nd and 3rd day were very interesting as for the first time I not only felt the body affects, but was somewhat depressed – this seldom ever happens to me. Therefore I rested and now on 4th day I feel more like myself. Stay the course – feel better.

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Did your muscles feel at all trembly when you tried to use them? I ask because when I had been thrown off of my horse, I felt like that. Was sure it was adrenal shock. Been thrown off many times and never had that reaction. Glad you were able to rest and get better. Sounds like you did the right thing.

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flymetothemoon | @flymetothemoon | Jan 4 7:59am
In reply to @npostusa "Hi, i have had my struggles with tapering prednisone and at certain levels of dosage. What..." + (show)
@npostusa

Hi, i have had my struggles with tapering prednisone and at certain levels of dosage. What I found is to go slow, stay on a regiment. For me, I averaged a drop of 1 mg took about a month to reduce. Each time I tapered my body would ache for a few days and then it would mellow out. My most recent drop (3mg) has been somewhat difficult. It has been about 4 days, but the 2nd and 3rd day were very interesting as for the first time I not only felt the body affects, but was somewhat depressed – this seldom ever happens to me. Therefore I rested and now on 4th day I feel more like myself. Stay the course – feel better.

Jump to this post

Maybe try just tapering 1/2 mg every 2 months. I went for my 3 month Rheumatologist visit yesterday, and all blood tests normal. Staying on this 2 mg for another month and then I will go down to 1 1/2 mg. This has to be a slow process. Good luck to you.

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lanieg | @lanieg | Jan 4 10:45am

Thanks to all of you who responded to my post. It seems that the PMR is under control with 10 mg prednisone 2x a day and the low dose gabapentin. I am also doing water exercise and adjusting my diet. Will work with my doc to start tapering off when we think I'm ready.
Blessings to all of you.

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