Is it PMR (and/) or Osteoarthritis?

Posted by walkamok @walkamok, Jun 8, 2023

My encounter with PMR began in November 2022, when suddenly I was beset with the pain and stiffness you are all familiar with. Even rolling over in bed required a fully-developed plan implemented with gritted teeth. Climbing the stairs was done on all fours. After a couple of weeks the diagnosis was made and a hefty dose of prednisone was started. This med was almost cartoonishly effective. Now I am on a taper like everybody else here!
Anyway, for months I have been bumping my way down the taper (presently a split dose of 6 and 3), with a pain level of 1 to 1.5 fairly consistent, and with a rare 2 or 2.5 usually associated with strenuous labor. However, ever since beginning the prednisone I have had no symptoms in my upper body; they are all located in the hip area. Furthermore, the symptoms are all located in the groin area, say, inboard of the hip flexors. OK, near my tackle. I have zero symptoms outside the groin area.
I know that osteoarthritis is lurking as it was identified in a hip x-ray taken when this all first hit, but the arthritis had been asymptomatic. But I am wondering now if in fact the PMR is being fully controlled by the steroid and all felt pain is actually associated with the arthritis. If so, perhaps I should stop hand-splitting firewood and speed up the taper.
Could you please weigh in on the following questions?
1. Do you have symptoms in your upper body/shoulders?
2. Precisely where are your middle-of-body symptoms located?

Many, many thanks!

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

The arthritis in my left hip flared when I was tapering off a low dose (10 mg) of prednisone for about a year. I ended up having a hip replacement at the end of the year. I did have a flareup of my PMR when I caught COVID and was taking 2 mg. at the time of my surgery. (BTW my PMR began after my second COVID vaccination). I have been pain free for a year now, but ocassionally I feel a little discomfort in my upper arms while in bed. I never had constant pain with my PMR--I only hurt while in bed and the pain was confined to my thighs and upper arms only. Hope this helps.

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@dadcue

"rheumy says we are therefore finished treating PMR, and the task is to get off prednisone without triggering adrenal insufficiency or crisis."

Thank-you for making this point. I should have known about this in the very beginning of treatment with prednisone. Adrenal insufficiency, to some degree, is an inevitable consequence of long term prednisone use. However "long term' isn't really very long.

Tapering prednisone slowly is recommended because of the risk of adrenal insufficiency directly. The indirect risk of PMR flares is probably due to adrenal insufficiency when one considers that one of the functions of cortisol is to regulate inflammation.

When we have a low cortisol level after we get to a low dose of prednisone our body's ability to regulate inflammation is compromised. Cortisol is called the "stress hormone." It stands to reason that stress of any kind triggers inflammatory flares when our cortisol levels are too low.

It took a person who suffered an adrenal crisis to explain this to me. Something clicked so I understood why I was unable to taper off prednisone after more than 12 years. My endocrinologist thought it might be impossible for me to taper off prednisone after that long.

Tapering off prednisone can be done even after 12 years but I needed to take a biologic that didn't suppress my adrenals. I stayed on 3 mg of prednisone for 6 months until my cortisol was at a low normal level. From start to finish it took nearly a year to be able to easily taper off prednisone.

A PMR flare was still possible but that inflammation was blocked by the biologic

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Thank you for your post, @dadcue. My rheumatologist has mentioned the possibility of taking a biologic (Kevzara), but my understanding is that the biologics lower a person’s immune response significantly. Was this true for you? Did you have to take special precautions when going out in public? If this is too personal a question, please say so. I just wonder how much taking a biologic might make my life even more restricted than it already is on prednisone.

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@lfd28

Thank you for your post, @dadcue. My rheumatologist has mentioned the possibility of taking a biologic (Kevzara), but my understanding is that the biologics lower a person’s immune response significantly. Was this true for you? Did you have to take special precautions when going out in public? If this is too personal a question, please say so. I just wonder how much taking a biologic might make my life even more restricted than it already is on prednisone.

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This is my personal opinion but your question isn't too personal. It is a very good question!

Prednisone was restricting my life already so I wouldn't say my life is more restricted on Actemra. I had problems with prednisone combined with almost any other medication that suppressed my immune system. However, Actemra didn't seem to cause any additional problems for me.

Actemra allowed me to rapidly decrease my prednisone dose to 3 mg. Before starting Actemra, the lowest dose of prednisone I could ever maintain was 10 mg. My prednisone dose was usually much higher than 10 mg most of the time since I was diagnosed with PMR.

My opinion is that less prednisone suppresses my immune system less.

I'm not saying that Actemra doesn't cause problems with the immune system. My rheumatologist says I'm still immunocompromised. I still need to be careful but no more than when I was on higher doses of prednisone.

I have never tested positive for Covid. When I get a cold it resolves quickly. When I was on prednisone, some of my colds would linger for weeks. I haven't had any infection more than a cold since being on Actemra. Usually any infection would cause a flare but I don't have flares anymore.

There are warnings that serious infections can happen to people on any biologic. I wonder how many serious infections happen when people are on prednisone plus a biologic.

I'm currently on Actemra alone. I believe I'm at less risk now than when I was on prednisone.

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@dadcue

This is my personal opinion but your question isn't too personal. It is a very good question!

Prednisone was restricting my life already so I wouldn't say my life is more restricted on Actemra. I had problems with prednisone combined with almost any other medication that suppressed my immune system. However, Actemra didn't seem to cause any additional problems for me.

Actemra allowed me to rapidly decrease my prednisone dose to 3 mg. Before starting Actemra, the lowest dose of prednisone I could ever maintain was 10 mg. My prednisone dose was usually much higher than 10 mg most of the time since I was diagnosed with PMR.

My opinion is that less prednisone suppresses my immune system less.

I'm not saying that Actemra doesn't cause problems with the immune system. My rheumatologist says I'm still immunocompromised. I still need to be careful but no more than when I was on higher doses of prednisone.

I have never tested positive for Covid. When I get a cold it resolves quickly. When I was on prednisone, some of my colds would linger for weeks. I haven't had any infection more than a cold since being on Actemra. Usually any infection would cause a flare but I don't have flares anymore.

There are warnings that serious infections can happen to people on any biologic. I wonder how many serious infections happen when people are on prednisone plus a biologic.

I'm currently on Actemra alone. I believe I'm at less risk now than when I was on prednisone.

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Thank you so much for your thorough and thoughtful answer. It is very helpful. Right now I seem to be stuck at 6.5 mg of prednisone. Going lower results in symptoms of PMR — not severe, but I don’t want a flare. Your answer makes me think that I should at least talk with my rheumatologist about a biologic.

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I have trouble determining if the pain I am experiencing in both shoulders is just my Arthritis or is it a PMR Flare up. This pain and some stiffness has become constant. I am a active 74 year old male and I know I have a lot of arthritis from my hips up to my neck. I was diagnosed with PMR about 5 years ago. Started out at 20 mg Prednisone and have had many flare ups through the years. My last inflammation markers were slightly above the normal range. I have been told that PMR always affects both shoulders and both hips. Anyone else have the same question - Arthritis or PMR ? Thanks

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@greggiew73

I have trouble determining if the pain I am experiencing in both shoulders is just my Arthritis or is it a PMR Flare up. This pain and some stiffness has become constant. I am a active 74 year old male and I know I have a lot of arthritis from my hips up to my neck. I was diagnosed with PMR about 5 years ago. Started out at 20 mg Prednisone and have had many flare ups through the years. My last inflammation markers were slightly above the normal range. I have been told that PMR always affects both shoulders and both hips. Anyone else have the same question - Arthritis or PMR ? Thanks

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It doesn't have to be either arthritis or PMR. More likely than not it is arthritis and PMR.

PMR exacerbates wear and tear osteoarthritis. I'm sure there are other people like me who have been diagnosed with both inflammatory arthritis and PMR.

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@greggiew73

I have trouble determining if the pain I am experiencing in both shoulders is just my Arthritis or is it a PMR Flare up. This pain and some stiffness has become constant. I am a active 74 year old male and I know I have a lot of arthritis from my hips up to my neck. I was diagnosed with PMR about 5 years ago. Started out at 20 mg Prednisone and have had many flare ups through the years. My last inflammation markers were slightly above the normal range. I have been told that PMR always affects both shoulders and both hips. Anyone else have the same question - Arthritis or PMR ? Thanks

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Hi @greggview73, can you get an Xray of your shoulders?
My whole body ached constantly with PMR. I went to Physical Therapy before diagnosis, which didn't help. On prednisone my shoulder pain went away, but I never got full range of motion back in my right shoulder after going off it.
I've had rotator cuff and bicep problems for years in that shoulder and just found out, after Xray, I need a shoulder replacement, due to osteoarthritis.
I can get relief by doing some isometric exercises, squeezing the shoulder blades together, putting them down and back and using an infrared heating pad. Also, I've found the exercises in this video to be helpful:
https://duckduckgo.com/?q=Nathan+Shoulder+Arthritis+Presurgery+Exercises&atb=v314-1&t=chromentp&iax=videos&ia=videos&iai=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DtIbNvwbSDII
I had a steroid shot in the joint but it didn't help the tendon/bicep pain.

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@greggiew73

I have trouble determining if the pain I am experiencing in both shoulders is just my Arthritis or is it a PMR Flare up. This pain and some stiffness has become constant. I am a active 74 year old male and I know I have a lot of arthritis from my hips up to my neck. I was diagnosed with PMR about 5 years ago. Started out at 20 mg Prednisone and have had many flare ups through the years. My last inflammation markers were slightly above the normal range. I have been told that PMR always affects both shoulders and both hips. Anyone else have the same question - Arthritis or PMR ? Thanks

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I knew I had issues with my left hip prior to the onset of PMR, but I kept it at bay for many years with an anti-inflammatory diet and exercise program. During my one year bout with PMR and weaning off of a low dose of prednisone, my hip exacerbated to the point that I had to have a hip replacement, which was the best thing I ever did. Anterior hip replacements are easy these days, whereas shoulders are probably not. I'm not sure if it was the PMR or the prednisone that made my hip worse, or perhaps I should just blame it on my mom, who had both hips done. 🙂 BTW, I only had PMR pain in my thighs and upper arms/shoulders and only when I was laying in bed! As soon as I got up in the morning, no pain! I do think that my whole foods, primarily plant-based, organic diet was a contributing factor in my mild case and fast recovery. I happen to be a registered dietitian. Good luck to you!

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@greggiew73

I have trouble determining if the pain I am experiencing in both shoulders is just my Arthritis or is it a PMR Flare up. This pain and some stiffness has become constant. I am a active 74 year old male and I know I have a lot of arthritis from my hips up to my neck. I was diagnosed with PMR about 5 years ago. Started out at 20 mg Prednisone and have had many flare ups through the years. My last inflammation markers were slightly above the normal range. I have been told that PMR always affects both shoulders and both hips. Anyone else have the same question - Arthritis or PMR ? Thanks

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Hello @greggiew73 - I combined your discussion with an existing discussion titled, "Is it PMR (and/) or Osteoarthritis?" - https://connect.mayoclinic.org/discussion/is-it-pmr-and-or-osteoarthritis/ to meet the many members talking about a situation similar to yours.

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@dadcue

It is incredible to me how good my shoulders and arms are in spite of all the severe pain in that part of my body when I was diagnosed with PMR.

My mid section down can only be described as a disaster zone. That part of my body wasn't so good before PMR was diagnosed.

I had a very long 12 year history of PMR. My original presenting systems of PMR were almost entirely my neck, shoulders and arms. I was begging for prednisone because of an even longer history of inflammatory arthritis which seemed to attack my spine and knees the most. Inflammatory arthritis was associated with uveitis which attacked my left eye mostly. I lived in fear of a day when I wouldn't have access to prednisone and that day arrived in the form of PMR. The pain had a way of spreading everywhere.

I have never heard of prednisone being described as "cartoonishly effective" but that was how it worked for me. One dose was sometimes all it took and I was "cured" of inflammatory arthritis. I usually took about 40 mg more or less for inflammtory arthritis. Fortunately a wise rheumatologist could discern that something different was happening that suggested PMR instead of inflammatory arthritis. When PMR was diagnosed, I got to take less prednisone but on a long term basis.

There really wasn't that much difference in the pain I felt with inflammatory arthritis as compared with PMR. The main difference was inflammatory arthritis was acute onset like overnight whereas PMR and PMR flares were more gradual over a few weeks and continued to get worse unless I took more prednisone. I was also "old enough" to have PMR whereas I was much younger when inflammatory arthritis started.

How long PMR and the need for prednisone lasts is anyone's guess. There are better treatments than prednisone for inflammatory arthritis. My understanding is that prednisone doesn't prevent the damage caused by inflammatory arthritis. I took prednisone for PMR for a very long time. Now I seem to have an inordinate amount of arthritis in my spine, knees and pretty much from the waist down.

I challenged my rheumatologist on more than one occasion about whether I still needed prednisone for PMR. She reassured me that my primary diagnoses was PMR but I still had inflammatory arthritis.

I'm off prednisone now thanks to a biologic targeted at PMR. The biologic was originally developed for rheumatoid arthritis but that isn't the type of inflammatory arthritis that I have. The hope was that the biologic would help both PMR and inflammatory arthritis. It is quite possible and more likely to have more than one autoimmune condition. Unfortunately when prednisone is used to treat PMR, arthritis can still occur and get worse.

The moral of this story is that prednisone taken by PMR sufferers doesn't prevent arthritis from becoming worse.

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Hi. Hope you are doing well. I am wondering what biologic are you on? My ruehmy wants me to go on kevacrz. Thanks Ellen

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