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I've worked my way through 10 years with PMR and after the first 5-6 years found some points that have carried me through very well.
First, I have held to a very, very slow reduction of my prednisone dose. Typically I only reduce 1/2 of a mg every 3 months. Slow but I've avoided flares these last years. Plus I have a rheumy that has bought into this approach. If I've felt any hint of the PMR acting up I've backed off the reduction and gone back up 1 mg at least to smooth things out again. Some good days followed by a bad day or 2 tells me that I've dipped a fraction too low on my dose. Personally, any kind of illness even a cold has been cause to increase the dose again and lose ground on the prednisone reduction schedule.
It's been a long, slow road for me but after multiple major flares in the early years I've been fine with looking at the long term approach. I am currently at 4 mg and hope to hit 3.5 by the end of February. If not, it isn't the end of the world as long as I'm feeling well. My early rheumys were so insistent that I be off prednisone in 2 years and did me a big disservice, causing some awful flare ups. Some get off in a couple years. Others like myself have to look at the long trip. My current rheumy says if I get to 3 mg that she is fine if I stay at that level forever, that it's such a minimal dose that the prednisone side effects at that level are little or none. Good luck!
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@raven1955
I would echo everything you posted because 12 years of PMR was a long, slow road for me as well. Unfortunately, I needed 10 mg to feel decent and I had a flare every time I reached 7 mg. Eventually, I was able to connect all of my dots.
I continued working from the age of 52 when I was first diagnosed with PMR until I retired at 62. It wasn't PMR as much as "overwhelming fatigue" that made me want to retire. Maybe I was also depressed because of too many medical complications.
The only difference between our journeys was that my rheumatologist thought I was "too young" to take Prednisone for the rest of my life. However, if I only needed 3 mg of Prednisone that amount of prednisone wouldn't be too concerning. I wasn't ever pressured to get off Prednisone but all my doctors "strongly encouraged" me to continue to try to taper off. Eventually I told my rheumatologist that I wasn't going to try anymore unless there was something that could replace prednisone.
My alternative to prednisone came in the form of Actemra (tocilizumab). Suddenly a faster taper was possible. At one stage I tapered my prednisone dose by 1 mg per week after Actemra was started. The thing that prevented me from tapering off prednisone was revealed at 3 mg of prednisone. That was when my cortisol level was too low for me to taper off Prednisone. My primary symptom of adrenal insufficiency was overwhelming fatigue. I also think flares happen when cortisol levels aren't sufficient to regulate inflammation as we taper our Prednisone dose lower. Either cortisol regulates inflammation or we need to take more prednisone.
Fortunately for me, Actemra kept PMR in remission while I stayed on 3 mg of Prednisone for 6 months. An endocrinologist was monitoring my symptoms and labs while I stayed on 3 mg. When my cortisol level finally normalized, an endocrinologist told me to discontinue prednisone. As long as PMR stayed in remission with Actemra and my cortisol level was normal, the endocrinologist told me to discontinue prednisone. The endocrinologist said there was no need to taper from 3 mg to zero as long as my cortisol level was normal.
My endocrinologist was concerned about whether or not my adrenals could produce enough cortisol if something very stressful happened to me. For this reason, she said I should restart Prednisone for "any reason" if I felt the need.
I haven't needed any prednisone for almost 5 years. Technically, I still have PMR but Actemra is doing a good job at keeping things in remission. Unfortunately, my PMR symptoms return when Actemra is stopped so I still need Actemra. An endocrinologist is still involved in my care because of "metabolic syndrome" from long term Prednisone use even though I have been off prednisone for 5 years.
It was easier for me to connect my dots after I was able to discontinue prednisone. I'm now 71 and doing much better since prednisone was discontinued.