First meeting with endocrinologist

@dadcue Thank you for your response. I am currently taking 2 mg. prednisone. My rheumatologist told be I no longer have PMR because I have had it for 2 years and that is the length of time for it (actually she is wrong I have only had it a year) This surprised me and I asked how she could tell. She said it is because I could raise my hands over my head and get up out of a chair. I have always been able to--with pain. So I inquired as to why I still had the same symptoms. She said--'probably arthritis." That is all she had to say. I am still pondering the appointment and thinking of changes of provider. She showed very little interest in my well being no matter what the diagnosis. Have you ever heard of PMR just being for 2 years--for everyone. My body tells me I still have it but I guess I have a year to convince it otherwise.

@csimmonds

I think doctors were taught that PMR was supposed to last 1-2 years in most cases. Current research says PMR can last much longer in some cases. I don't know what to believe but I know patients diagnosed with PMR seem to need Prednisone for longer than 2 years. I took Prednisone for 12 years to treat PMR.

A universal problem is that patients have a very difficult time tapering off Prednisone within a 2 year time frame after PMR is diagnosed.
https://www.keele.ac.uk/nhs/healthimpactinthenews/2022/may/keele-research/polymyalgia-rheumatica-treatment.php
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I think there are many possible reasons. Patients can have PMR longer than 2 years so that is certainly possible.

People can have other underlying conditions in addition to PMR so that is possible too. Those other conditions can include osteoarthritis pain which tends to disappear when Prednisone is started but resurfaces again when we taper our Prednisone dose lower.

I was diagnosed with a type of autoimmune inflammatory arthritis many years before PMR was diagnosed. My rheumatologist believed it was possible to have multiple autoimmune conditions simultaneously. As the following link says treating multiple autoimmune conditions gets tricky.
https://www.uclahealth.org/news/article/treating-two-autoimmune-disorders-simultaneously-tricky.
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The longer we take Prednisone the more difficult it is to taper off Prednisone. This is especially true when our adrenal function doesn't recover very quickly after long term Prednisone use. Prednisone induced adrenal insufficiency mimics PMR symptoms too.
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I honestly don't know why I needed Prednisone for 12 years to treat PMR. I tend to believe it was all of the above. The thing that makes me wonder is whether or not Prednisone is the best treatment for PMR. When I started a biologic called Actemra to treat PMR ... then I was able to taper off Prednisone in 2 years.

Anything is possible. Researchers are only starting to understand PMR. It is always possible that what was thought to be known in the past about diseases turns out to be completely wrong. Doctors can't believe everything they are taught. Likewise ... patients can't believe everything a doctor says. I liked my doctor the most when they flat out said they didn't know everything.

@joyl263

There is some debate about needing to to be completely off Prednisone in order to have a morning cortisol level checked. My endocrinologist said being on 3 mg or less of Prednisone for an "extended period of time" was a low enough dose to "screen" for a return of my adrenal function. I also had to be able to not take any Prednisone for 48 hours prior to checking my cortisol level.

My endocrinologist "expected" a low cortisol level because I was on Prednisone for 12 years. However, she also thought 3 mg of Prednisone or less would be a low enough dose to see if my adrenals had started to produce any cortisol again. While complete cessation of steroids is ideal, tapering to a low dose (≤ 3 mg prednisone) and holding it for 24–48 hours is a standard protocol to screen for adrenal functioning while minimizing the risk of an adrenal crisis.

There isn't any consensus of opinion about the proper way to discontinue Prednisone after long term use.
https://bmjopen.bmj.com/content/15/12/e107269
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At least it is recognized that the normalization of the HPA axis and the ability of the adrenals to produce cortisol again is a significant barrier to tapering off Prednisone. It seems that it is easier to say the patient had a flare of their disease instead of a low cortisol level causing symptoms. The function of cortisol in the body is to "regulate inflammation" so it is no wonder we flare. However, the reported symptoms could either be a disease flare or they could be interpreted as attributable to adrenal insufficiency. Symptoms can also be a combination of disease flare and adrenal insufficiency.

It was also interesting when my endocrinologist said 3 mg of Prednisone was a very low dose. When my cortisol level was "adequate" and I didn't need Prednisone any longer to control PMR then I could simply stop taking Prednisone. In other words ... as long as PMR was controlled AND my cortisol level was normal then I could discontinue Prednisone without doing a prolonged taper. My symptoms of adrenal insufficiency were also evaluated before I discontinued Prednisone.

@dadcue hi. Is this a new finding on low dose prednisone? Is it ok to just quit if cortisol level is ok? I’ve been on Actemra for 7 months and have been on prednisone 1 then 2 mg alternating every other day.

@randersonccc

I would suggest that you have a discussion with your doctor. It is generally not safe to abruptly quit prednisone, even at low doses (1–2 mg) and even if cortisol levels appear to be okay. There are many other factors to consider so communication with your doctors is imperative.

There wasn't any absolute way that my endocrinologist could say that I didn't need Prednisone anymore. She conferred with my rheumatolgist before telling me that it "might be safe" to discontinue prednisone. It was mostly my decision about when and how I was going to stop prednisone. I discussed it with my doctors what I was going to do and they approved. I didn't go from 3 mg to zero abruptly but I didn't do a "prolonged taper" either. I remember thinking when I first stopped Prednisone that I was taking a "leap of faith."

My first attempt to stop prednisone didn't go so well. What happened got the attention of my rheumatologist, my ophthalmologist and my endocrinologist. Each one of these specialists was telling me something different. Within a week or two of stopping Prednisone the first time ... I needed 60 mg again. What happened to me wasn't catastrophic. It was something that was very familiar to me but it had been dormant for a long time. There was no way anyone could have predicted it to happen. I guess it partially explains why we are all different.

What happened was only a temporary setback. It only delayed the time for me to taper off Prednisone again by about 6 months. In the context of me taking prednisone for "decades" -- six more months wasn't that long.