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Initial Dosage of Prednisone Impacts Long Term Recovery
Polymyalgia Rheumatica (PMR) | Last Active: Mar 29, 2023 | Replies (20)Comment receiving replies
From my experience with uveitis and other autoimmune problems, I would tend to agree with the results of this study. High dose (upwards to 100 mg, but 60 mg was usually enough) followed by a fast taper (2 months or less) was the approach I successfully used to treat uveitis and flares of reactive arthritis to achieve remission. I would still have recurrent flares every couple of years.
PMR was a different beast of a problem when I was diagnosed. First there was a delay in being diagnosed with PMR ... the assumption being that my symptoms were being caused by another flare of reactive arthritis which isn't treated with long term prednisone. My rheumatologist was reluctant to prescribe prednisone to me thinking I was taking too much of it.
After more than a year of not being allowed to do my usual regimen of a high dose followed by a fast taper, my symptoms evolved into widespread pain and stiffness after initially only being unable to lift my arms.
When PMR was diagnosed, my prescribed prednisone dose was only 20 mg which wasn't anywhere near enough in my opinion. After a few more months my rheumatologist wanted me to find a "stable dose" that worked which turned out to be 40 mg. I was then told to taper slowly. I was informed that I would be taking prednisone for at least a year or two.
I was unable to taper down to 20 mg for nearly 10 years without having recurring relapses along with continuous disease activity. I suspected that something else was going on and my problem wasn't only PMR.
I was unable to exercise and I had to retire early on disability at the age of 62. Overwhelming fatigue was my biggest problem when I retired. I still had pain but it could be explained by other problems and not caused by "just" PMR. Prednisone relieved most of the other types of pain but surgical intervention was required for other problems.
After a biologic was prescribed for PMR, I was able to quickly taper down to 3 mg. I was then diagnosed with adrenal insufficiency. In my opinion, a low cortisol level made it difficult for my body to "regulate inflammation." I was also having problems regulating my blood pressure, cholesterol level, weight, metabolism, mood and yes even my sleep pattern.
I found it interesting that these things are some of the things cortisol is supposed to regulate. My endocrinologist said most of my problems were caused by long term prednisone use.
Replies to "From my experience with uveitis and other autoimmune problems, I would tend to agree with the..."
@dadcue Just curious what biologic you are taking. I am on Enbrel for Ankylosing Spondylitis. I don’t seem to need the high level of steroids that many are taking. I do need them though, wo PMR is worst than AS to me. Not sure if connected.
I forgot to mention I had countless bouts of
uveitis that would only respond to oral prednisone, before being diagnosed (10 yrs ago with AS) and starting biologics.
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Thanks for this thoughtful and intelligent commentary.
I'd appreciate any of your thoughts on this question:
Have you ever heard of someone with all the symptoms of polymyalgia rheumatica, EXCEPT the stiffness?
Although I've had all the expected pain, and then some, there has never been any stiffness. I've been able to continue to lift my arms above my head and move about normally from the beginning. There have been no problems getting out of bed or into the bath or anything like that.
It's an oddity of my PMR that is unresolved.
And if the reasons for this were understood, it could perhaps give more guidance to my treatment. The doctors and rheumatologists I've seen so far have no answers, and just say I have a "severe and unpredictable presentation"...
I have all the other indications for PMR. I experienced severe bilateral shoulder & hip pain, sudden onset, and responded within days to prednisone, although it has ultimately taken 60 mg/day to bring the inflammation down to normal levels. I have tested negative for all other autoimmune diseases they can test for (8 blood draws so far and counting), I'm negative for cancer, negative for infection, negative (so far) for Giant Cell Arteritis. I have a northern European background, so I'm likely genetically predisposed to PMR. It seems like the right diagnosis.
For some background, I had always been very healthy and active, but at 63 years of age was diagnosed with PMR on Feb 3, 2023. I'm on 60 mg of prednisone because my inflammation was extremely severe. (My untreated CRP was CRP = 347 mg/L. Untreated levels above CRP =150 mg/L are very rare indeed for PMR, and above CRP = 200 mg/L is almost unheard of.)