1. < Polymyalgia Rheumatica (PMR)

Grouped Into 3 Buckets

Posted by 70infl @70infl, Aug 18 1:44pm

So, I got into see a rheumatologist last month WRT my PMR that I've had since March. Up until that time I'd been under the care of my GP with prednisone.
Summary, my rheumatologist says there are 3 categories of PMR patients. Those who can be weaned off of prednisone, those who must remain on prednisone and those who need another type of treatment.
Up until meeting him I had been able to reduce to 5mg a day and still have reasonable comfort, trying to go lower in dosage never worked. He put me on a 30-day program at 5mg daily. Then at the first of Sept I'm to drop to 2.5mg. This is the process he's assigned to determine what category I may fall into.
Wish me luck come September 1st.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

54pontiac | @54pontiac | Aug 22 2:42pm
In reply to @dadcue "You can probably find a rheumatologist that would be happy to prescribe low dose Prednisone to..." + (show)
@dadcue

You can probably find a rheumatologist that would be happy to prescribe low dose Prednisone to you for the rest of your life. My rheumatologist actually said, "if I only needed 3 mg or less there wouldn't be too much concern." My rheumatologist said this prior to wanting me to try Actemra.

Since I was on Prednisone doses in excess of 10 mg daily for 12 years, my rheumatologist's comment about not being concerned wasn't pertinent to me. I had to rectify "quality of life" with my strong desire to get off Prednisone. That wasn't that difficult for me to do because Prednisone wasn't my ticket to a quality life. When I read all the obvious Prednisone side effects people have on forums like this one it makes me wonder how anyone wants to take Prednisone for more than a couple of years.

My personal belief is Prednisone is a good "short term" medication for PMR. The consistent thing I read in the medical literature is the "long term dependence" on Prednisone isn't good no matter what disorder is being treated. More and more, the medical research is saying even low dose Prednisone isn't good for the long term.

Dependence isn't an addiction when you realize the body depends on cortisol produced by the adrenals to regulate inflammation. When considering the adrenal suppression that occurs when we take Prednisone there is a choice we need to make. Either we allow our adrenals to function as they should or we continue to take Prednisone as a cortisol substitute.

The real dilemma is finding an alternative to Prednisone to treat PMR. People with PMR need to advocate for alternatives to prednisone rather than promote the "quality of life" of long term Prednisone use. Fortunately, I agreed to try Actemra. My rheumatologist and I both agree I'm "better off" being on a monthly infusion of Actemra and not taking Prednisone for the rest of my life.

When Prednisone was initiated for PMR, I was told it would be for a year or two and it ended up being 12 years. From my long term experience with prednisone, I have a difficult time telling anyone they should do the same. My quality of life didn't improve until after an alternative to Prednisone was found.

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I agree that using the term ‘addiction’ with prednisone is misleading at best and shaming at worst. A doctor should know better. Are diabetics addicted to insulin? The problem with prednisone, as I understand it, is that it can dissolve your bones, even at low doses. And of course there are a host of other unpleasant side effects that can come with it. The sooner we can encourage our adrenals to take over the better. But ironically, it must be done slowly.

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jfannarbor | @jfannarbor | Aug 24 6:39pm
In reply to @yogabonnie "I am on 1.5mg of prednisone.. 8 years now of having tapered from 25 and a..." + (show)
@yogabonnie

I am on 1.5mg of prednisone.. 8 years now of having tapered from 25 and a couple flares. Was between 5 and 2.5 for most of that time. I now went to a Rheumy who said PMR only lasts 1 year. no more. (so right away I didn't care so much for her.) She is suggesting Sulfamonide (think that is the name.) My question. Is 1.5mg. or 1mg of prednisone if it keeps your feeling ok so very bad? worse than these other drugs. Sulfamonide, Methotrexate, aceterma or for that matter 2500 of Tylenol every day (which I am taking because of all the aches and pains at 1.5. Thanks!

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Is it true that PMR only last one year? I have had it off and one for 30 years and each time prednisone was immediate relief. As I noted in previous posts I have been on and off prednisone maybe 20 times. Currently my rheumatologist doesn't think I have PMR. He thinks it is spondylo arthritis. Although I am drugs for arthritis the most important drug I take is Tylenol 1000 mg 3X/d. I went on that by accident when I had a tooth extracted and started taking Tylenol. It helped my PMR / arthritic pain a lot.

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1 reply
DadCue | @dadcue | Aug 24 9:17pm
In reply to @jfannarbor "Is it true that PMR only last one year? I have had it off and one..." + (show)
@jfannarbor

Is it true that PMR only last one year? I have had it off and one for 30 years and each time prednisone was immediate relief. As I noted in previous posts I have been on and off prednisone maybe 20 times. Currently my rheumatologist doesn't think I have PMR. He thinks it is spondylo arthritis. Although I am drugs for arthritis the most important drug I take is Tylenol 1000 mg 3X/d. I went on that by accident when I had a tooth extracted and started taking Tylenol. It helped my PMR / arthritic pain a lot.

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What type of spondyloarthritis does your rheumatologist think you have?

While there are overlapping features of the various types of spondyloarthritis, the types of spondyloarthritis include:
Ankylosing spondylitis.
Axial spondyloarthritis.
Enteropathic spondyloarthritis.
Peripheral spondyloarthritis.
Psoriatic arthritis.
Reactive arthritis.

It is possible to have PMR in addition to spondyloarthritis. My rheumatolosgist says it is "unfortunate" when that happens.

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brian326 | @brian326 | Aug 25 5:26pm

I wish you all the luck!

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nyxygirl | @nyxygirl | Aug 29 7:45am

HI all -- interesting discussion -- when I found this first ( 2020) paper by Sara Muller - I was encouraged that I could be the Class 4 patent - "Rapid and sustained recovery "-- as was my cousin . This study supports describing PMR patients ending up in at least 3 "buckets" - according to them- 5 clusters. I will attach the manuscript and the 2022 follow up

with a minor detour because of increasing Prednisone in July -- I had tapered to zero mg then ( woo hoo!) with the 0.5mg/2week strategy, and now tapering at 1mg/2 weeks.

Shared files

2020 longitudinal clusters kez533 (2020-longitudinal-clusters-kez533.pdf)

rkac034 muller 2022 muller cohort follow up (rkac034-muller-2022-muller-cohort-follow-up-.pdf)

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1 reply
DadCue | @dadcue | Aug 29 12:15pm
In reply to @nyxygirl "HI all -- interesting discussion -- when I found this first ( 2020) paper by Sara..." + (show)
@nyxygirl

HI all -- interesting discussion -- when I found this first ( 2020) paper by Sara Muller - I was encouraged that I could be the Class 4 patent - "Rapid and sustained recovery "-- as was my cousin . This study supports describing PMR patients ending up in at least 3 "buckets" - according to them- 5 clusters. I will attach the manuscript and the 2022 follow up

with a minor detour because of increasing Prednisone in July -- I had tapered to zero mg then ( woo hoo!) with the 0.5mg/2week strategy, and now tapering at 1mg/2 weeks.

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Sara Muller et al. are doing some great research in my opinion. More of a patient centered approach to figure out why long term treatment with steroids isn't working out so well.

The next step is to find alternatives when people can't taper off Prednisone easily.

Nearly all research papers I read about PMR point out the problems with long term steroids.

As this paper points out:
"There are concerns from professionals and patients regarding the potential side-effects of such long-term glucocorticoid treatment [1, 5–7], and evidence is emerging that people with PMR experience a high burden of incident glucocorticoid related morbidities, including vascular (23% increased risk), respiratory (25% increased risk), endocrine (41% increased risk) and gastroenterological (21% increased risk) morbidities. Glucocorticoid treatment can also affect the eyes (37% increased risk), in addition to bone health (111% increased fragility fracture risk), and can cause or exacerbate mood problems (29% increased risk) or, in some cases, lead to psychosis in psychiatric conditions."

At least the medical experts are aware of these problems. Some people like to say these Prednisone side effects are easy to manage but that truly isn't the case.

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