Is it PMR (and/) or Osteoarthritis?

I was diagnosed in April and my symptoms were overwhelmingly in my upper arms down through my hands and fingers plus my knees. I had a little soreness where I flexed my hips which I initially attributed to compensating for other areas but it immediately went away when I started prednisone and my rheumatologist said it was pmr. I totally relate to your battle plan for getting out of bed and doing so with gritted teeth which I also needed to do to rise from a sitting position. To climb stairs I had to tell myself, “now lift that leg.” I am making good progress and now back to doing most things with some limitations and do not want to go back to acute pmr phase where not only was the pain a 10 plus but the mental exhaustion from having to think thru every move was overwhelming.

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.

Hi @jholland ... What do you mean by experimental stages of inflammatory arthritis?

The biologic that was tried was Actemra (tocilizumab). It has help me in many ways but I still have severe spinal stenosis and arthritis in lumbar spine. My knees have already been replaced. My hips aren't too bad.

Before PMR was diagnosed I was accustomed to taking 40-60 mg of prednisone for flares of inflammatory arthritis. The pain was mostly localized to my lower back. I also had frequent flares of uveitis (eye inflammation) that would accompany the arthritic flares.

Uveitis can cause blindness if it isn't treated quickly but being seen quickly was never a problem. I was well known by the ophthalmology department so all I needed to do was report another flare of uveitis and I was seen within hours. The treatment for uveitis was a high dose of prednisone anywhere between 60-100 mg. I was always able to taper off in a month or two. Remission of uveitis was easy to achieve except it would recur frequently. Uveitis recurred once or twice per year.

After PMR was diagnosed, my primary diagnosis became PMR with a "history of" inflammatory arthritis. PMR changed everything. I was started on a moderately high dose of prednisone daily. Flares of uveitis stopped happening.

I wouldn't say I had excessive amounts of lower back pain after PMR was diagnosed while taking prednisone daily. The back pain certainly wasn't excruciating like it was for flares of inflammatory arthritis.

PMR pain started in my shoulders and spread all over. The stiffness was the worst part because I couldn't move. As long as I took enough prednisone my PMR symptoms were tolerable. It became impossible to taper off prednisone.

When Actemra (tociliumab) was started I was able to taper off prednisone in less than a year. Uveitis was quiescent for 12 years during my PMR days. Unfortunately, as soon as I got off prednisone while taking Actemra, I had flare of panuveitis which is the worst kind. I was back on 60 mg of prednisone but I couldn't taper off because Actemra was stopped.

A uveitis specialist thought another biologic called Humira would work better along with prednisone. Uveitis went into remission again except the diffuse pain from PMR returned. I was stuck on 15 mg of prednisone and Humira.

Actemra was restarted and Humira was stopped. I tapered off prednisone in 3 months the second time. My rheumatologist has tweaked my Actemra dose during my 4 years of taking it and everything seems to be well controlled. Actemra injections work but I would say monthly infusions work better for me. I do a monthly infusion currently.

I still have rather severe arthritis but that isn't expected to get any better. A neurosurgeon says the lumbar stenosis has improved since a synovial cyst disappeared. The synovial cyst developed when I was off Actemra due to a problem with the supply chain during Covid.

Your mention of groin pain reminded me of my husband’s Orthopedic Surgeon’s comment. When groin pain is present it indicates trouble in the hip joint. My husband has had both hip joints replaced. Getting old isn’t for sissies!

I had groin pain and it is not the hip. My hip checks out fine but it is 3 herniated discs pressing on my spinal cord. This has also caused incontinence. It is a challenge figuring out the source of all our pain and it isn’t for sissies for sure.

Hi @jholland ... What do you mean by experimental stages of inflammatory arthritis?

The biologic that was tried was Actemra (tocilizumab). It has help me in many ways but I still have severe spinal stenosis and arthritis in lumbar spine. My knees have already been replaced. My hips aren't too bad.

Before PMR was diagnosed I was accustomed to taking 40-60 mg of prednisone for flares of inflammatory arthritis. The pain was mostly localized to my lower back. I also had frequent flares of uveitis (eye inflammation) that would accompany the arthritic flares.

Uveitis can cause blindness if it isn't treated quickly but being seen quickly was never a problem. I was well known by the ophthalmology department so all I needed to do was report another flare of uveitis and I was seen within hours. The treatment for uveitis was a high dose of prednisone anywhere between 60-100 mg. I was always able to taper off in a month or two. Remission of uveitis was easy to achieve except it would recur frequently. Uveitis recurred once or twice per year.

After PMR was diagnosed, my primary diagnosis became PMR with a "history of" inflammatory arthritis. PMR changed everything. I was started on a moderately high dose of prednisone daily. Flares of uveitis stopped happening.

I wouldn't say I had excessive amounts of lower back pain after PMR was diagnosed while taking prednisone daily. The back pain certainly wasn't excruciating like it was for flares of inflammatory arthritis.

PMR pain started in my shoulders and spread all over. The stiffness was the worst part because I couldn't move. As long as I took enough prednisone my PMR symptoms were tolerable. It became impossible to taper off prednisone.

When Actemra (tociliumab) was started I was able to taper off prednisone in less than a year. Uveitis was quiescent for 12 years during my PMR days. Unfortunately, as soon as I got off prednisone while taking Actemra, I had flare of panuveitis which is the worst kind. I was back on 60 mg of prednisone but I couldn't taper off because Actemra was stopped.

A uveitis specialist thought another biologic called Humira would work better along with prednisone. Uveitis went into remission again except the diffuse pain from PMR returned. I was stuck on 15 mg of prednisone and Humira.

Actemra was restarted and Humira was stopped. I tapered off prednisone in 3 months the second time. My rheumatologist has tweaked my Actemra dose during my 4 years of taking it and everything seems to be well controlled. Actemra injections work but I would say monthly infusions work better for me. I do a monthly infusion currently.

I still have rather severe arthritis but that isn't expected to get any better. A neurosurgeon says the lumbar stenosis has improved since a synovial cyst disappeared. The synovial cyst developed when I was off Actemra due to a problem with the supply chain during Covid.