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New member with PMR

Polymyalgia Rheumatica (PMR) | Last Active: 4 hours ago | Replies (19)

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@jeff97

Hello Terri and welcome. I was diagnosed with GCA and PMR in late June 2024, so I'm familiar with both of those conditions. I started at 60 mg per day of prednisone, and I've tapered down to 6. I also taking Actemra injections weekly.

Has the prednisone taken care of your pain and stiffness? 4 months seems like a reasonable amount of time to get down to 10 mg. I would think you could taper in steps of 2.5 mg per month, and once you get down to 10, stay there until your appointment. Just see how you feel and if the pain comes back, go back to the previous dose and then start tapering at a smaller decrease.

Assuming you don't already have bone density issues, a standard piece of advice for anyone taking prednisone for an extended period of time is to take calcium and vitamin D supplements. I take a pill that combines both along with vitamins K2 and B12.

Also, take the prednisone as early in the day as possible along with food. I have to take a PPI, pantoprazole, to control digestive tract irritation. If you have problems you might need one too. Some people end up splitting their dose to get through the whole day better, but you can see how you do first with a single dose in the morning.

Are you having any problems with insomnia? I had a lot of trouble, but it went away once I got down below 40 mg per day. Hopefully you won't have that problem, but lots of people do.

Feel free to ask questions! I know I felt very much at sea when I was first diagnosed.

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Replies to "Hello Terri and welcome. I was diagnosed with GCA and PMR in late June 2024, so..."

HORRIBLE insomnia and anxiety! There is at least one night a week that I don’t sleep at all. I take 100mg Trazodone and it doesn’t touch the insomnia. I also take 40 mg PPI (Pepsid) morning and evening for GERD, but it is MUCH worse on the prednisone. I down Alka Seltzer heartburn chews during the day too. These meds I have been on for years before my diagnosis. I requested a very mild anti anxiety medication from my doctor and she denied it. I’ve been through over a decade of mindfulness training around my pain because doctors poopah chronic pain. I finally find what stops the pain and they won’t allow any anti anxiety meds? I’m so frustrated.