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@hfoster

I have had PMR symptoms for 9 months but just diagosed a month ago. I am 53. Started 15mg Prednisone for 1 week then 10. Seemed to be ok but never pain free then woke up one morning with significant pain in shoulder and hip girdles. Didn't even exercise the day before. Has anyone had this happen? Seems very random. I'm trying to figure out the triggers of this disease so I can avoid them!

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Replies to "I have had PMR symptoms for 9 months but just diagosed a month ago. I am..."

Hi @hfoster, Welcome to Connect. I've had PMR twice and it's currently in remission. Both times I was started at 20mg prednisone which took away the pain completely. The tapering can be tricky and the goal is to listen to your body. I did have episodes of the PMR flaring back up when I tapered too fast or by too much. It took me 3-1/2 years to taper off the first time. The last six months going back and forth between 1mg and 1/2mg until I could stop taking prednisone with little to no pain. The second time it was much easier which I attribute to making some lifestyle changes - healthier eating and more exercise. Here's some information that might help:

Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

Another thing that helped me a little more the second time around was that I kept a daily pain log along with the dosage amount of prednisone. My rheumatologist gave me the suggestion along with the tapering tip of listening to my body and tapering down only when the pain was under control. For me that was when my pain was less than 2 on a scale of 1 to 10. He also gave me scripts for 2.5mg and 1mg prednisone tablets to make the tapering easier.

Do you keep a daily pain log with the amount of prednisone you took that day?

Seems like your dose of Prednisone may not be enough. I started at 20 mg. in January 2022 and immediately all pain was gone. Prior to this, I was pretty much completely debilitated. I'm in the process of trying to taper now, which is a bit of a roller coaster. 12.5 mg was not good, so I upped it to 13 which seems a little better and now back down to 12.5 for a couple of weeks. I had significant pain from the neck, to the shoulders, to the upper arms, to the hands (right hand looked like a claw and required a split to keep it from curling). Hips, back of thighs and buttocks were excruciating. Could not sit on the toilet and could not do the reach around. It was horrible. Your drop in dosage seems to be too much and so the inflammation is likely building up again. Talk with your GP or Rheumatologist about increasing the dosage for awhile. It takes time for your body to settle in and we MUST listen to our bodies. Everyone is different. Cheers!