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@andirae

I also should mention my functional dietary nutritionist feels she can help get a handle on this instead of a biologic. As she says”drs are trying to control symptoms and not looking for the root cause. That’s my realm. “

I am not sure of any timetable for any of this whether biologic or other means.
Being that you dealt with PMR for a longer period, is it debilitating over time or a nuisance(?) to deal with?

And as always, I’m looking for knowledge and answers since I know no one personally who has this condition or even heard of it. This forum has given me comfort and a less feeling of isolation in this journey.

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Replies to "I also should mention my functional dietary nutritionist feels she can help get a handle on..."

"Being that you dealt with PMR for a longer period, is it debilitating over time or a nuisance(?) to deal with?"

That is an interesting question. PMR was very debilitating at first. I was very happy when prednisone relieved most of the pain and stiffness. This stage lasted for a couple of years. There was no question in my mind that I needed to take prednisone because I couldn't bear the consequences if I didn't. I woke up every morning with pain but I still needed to go to work so I took prednisone at 3 a.m. just to be able to go to work at 7 a.m. Otherwise I needed to let my employer know by 4 a.m if I needed to take a sick day. At 3 a.m. it would seem impossible to go to work but if I took prednisone at 3 a.m, I would reliably feel much better and able to go to work at 7 a.m.

This routine lasted for 2-3 years but it gradually changed. I would sometimes sleep the entire night without the 3 a.m. pain. It wasn't a "good night of sleep" because I would still have some"discomfort" but taking my prednisone dose could wait until I wanted to get up at 6 a.m and get ready to work. I was still taking a lot of prednisone so I wasn't making any progress with decreasing my dose.

I would try to taper my dose lower but my rheumatologist didn't give me any set schedule. I didn't try to decrease my dose very often which is why I say it all depended on how I felt. My inflammation markers were elevated even when I took prednisone. I remember my rheumatologist telling me to increase my prednisone dose when I was already taking 30 mg. She was amazed that my inflammation markers were still elevated on 30 mg even though I didn't feel more pain.

Maybe that is why your rheumatologist wants you to increase your dose if your inflammation markers are still high. My inflammation marker were very high initially when I was diagnosed with PMR. After many years on Prednisone, my inflammation markers were stubbornly slightly elevated and rarely within the normal range.

My tapering progress was incredibly slow. Going from 30 mg to 20 mg took me 5 years. Going from 20 mg to 10 mg took me another 5 years. I had many setbacks along the way. I don't know if every setback was a PMR flare because my pain was never exactly the same as my original PMR symptoms. My original symptoms were distinctly shoulder pain along with generalized pain and stiffness. The stiffness lasted all day long but the shoulder pain mostly stopped when I took prednisone. I wasn't convinced I still had PMR after 10 years. I had "generalized pain and stiffness" which was mostly relieved when I took Prednisone but the shoulder pain was gone.

I still felt like I needed to take prednisone but maybe not for PMR. I told this to someone who had an adrenal crisis from long term prednisone use. I told her about feeling more normal when I took prednisone. The debilitating pain would return whenever my Prednisone dose was decreased. She raised some serious concerns about me have adrenal insufficiency. She wasn't wrong about that as I found out later when Actemra allowed me to get to 3 mg of prednisone.

What is sometimes hard to comprehend is that a person can still have PMR and adrenal insufficiency caused by long term prednisone use. I tend to believe they go together as the following link suggests.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44