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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (85)Comment receiving replies
@martyn Yes, I've been off prednisone for about a year. I noticed that my metabolism returned to normal about month after I stopped taking prednisone, and my heart got strong again somewhere between 4 and 6 months after stopping. The decrease in maximum heart rate might have been more pronounced in my case because of the high doses of prednisone I had to take for GCA. I had 3 daily IVs of 1000 mg each day for my initial treatment. That was to help prevent vision loss. Then I took 60 mg a day for 6 weeks, and then tapered to zero over the next year.
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@jeff97
Were you started on Actemra relatively soon after you were diagnosed with GCA?
I was on prednisone for 12 years before Actemra was tried and then another year or so until I was able to taper off prednisone. It wasn't so bad being on prednisone other than how it changed my heart rate, blood pressure, metabolism, sleep cycle, mood and so many other things. I didn't know that prednisone replaced cortisol which was a major regulatory hormone.
https://my.clevelandclinic.org/health/articles/22187-cortisol
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It was impossible to take the right amount of prednisone when the situation warranted more or less prednisone. There was no way I was ever going to regulate my prednisone dose the way the HPA axis regulates cortisol. I did the best that I could but 12 years on prednisone was way too long.
https://my.clevelandclinic.org/health/body/hypothalamic-pituitary-adrenal-hpa-axis
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I still do a monthly Actemra infusion. I am now five years into my post prednisone recovery and I still see an endocrinologist for hormone imbalances and metabolic abnormalites. My cardiovascular system has normalized so I don't need blood pressure medications anymore. I think my post prednisone recovery is slower because PMR lasted a long time and needed prednisone for more than 12 years until I finally tapered off. I have learned more about prednisone after I tapered off than during the 12 years when I was taking it. My endocrinologist has explained many things to me.
Maybe it is just because I have aged naturally instead of feeling like I suddenly aged when PMR was first diagnosed. At least Actemra doesn't suppress my adrenal function like prednisone did.