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.