I can relate to much of it ...

I was diagnosed with ax-SpA about 35 years ago --- Reactive Arthritis with Uveitis

High dose prednisone was prescribed by my ophthalmologist to treat more than 30 flares of uveitis in the first 20 years. I used leftover prednisone to treat other things including trigeminal neuralgia. The usual medications to treat trigeminal neuralgia didn't work well and caused side effects.

Frequent use of high dose prednisone probably contributed to early onset cataracts. Cataract surgery restored vision in both eyes.

I only used bursts of high dose Prednisone followed by a fast taper before PMR was diagnosed. I didn't think I needed a primary care doctor or a rheumatologist until after PMR was diagnosed.

PMR diagnosed over 15 years ago --- high doses of prednisone prescribed on a long term basis caused a plethora of side effects. Prednisone side effects were treated with a plethora of other medications. All of the other medications caused more side effects on top of prednisone side effects.

NSAIDs -- GI problems and not recommended with prednisone
Methotrexate ---elevated liver enzymes with nausea/vomiting
Leflunomide --- multiple infections which required antibiotics and the infections probably caused flares of reactive arthritis

Foot drop (acute onset) caused by severe spinal stenosis with idiopathic peripheral neuropathy.

Actemra (tocilizumab) --- good response!

I tapered off Prednisone in one year. I tapered off prednisone for the first time in 12 years. While on 3 mg of prednisone, it was discovered that I had adrenal insufficiency. I needed to stay on 3 mg of prednisone for an extended period of time otherwise I could have tapered off prednisone sooner.

When I was finally able to get off Prednisone for the first time in 12 years, I had a flare of panuveitis. I was switched to Humira with 60 mg of prednisone. Humira didn't seem to work well for PMR and I was stuck on 15 mg of prednisone again.

I switched back to Actemra --- good response again.

I tapered off Prednisone in 3 months the second time while doing more frequent injections of Actemra. When Actemra was stopped because of supply problems during Covid -- my symptoms worsened. I was put back on Humira and prednisone again until supplies of Actemra improved.

I'm currently doing monthly Actemra infusions. I have no serious side effects. I'm off nearly all my other medications used to treat Prednisone side effects.

In addition to medical interventions, I also had surgical interventions besides cataract surgery.
Hand surgery fixed a "spontaneous" tendon rupture.
Knee replacement surgeries fixed severe arthritis in the both knees.
Microvascular Decompression (MVD) surgery fixed Trigeminal Neuralgia

I still have foot drop and lower extremity numbness and weakness. Lumbar fusion surgery is pending. Severe arthritic changes in my lumbar spine caused severe spinal stenosis. Pain is the deciding factor for a lumbar fusion but the pain isn't severe enough currently. Surgery for severe lumbar stenosis has a poor prognosis because of all the prednisone I took for 35 years. I would also need to stop Actemra again and I don't want to do that. I don't want to have anymore surgeries ... I'm getting too old for major surgery.

As long as the pain is tolerable ... why cause more pain? I refuse to take prednisone again unless it is absolutely necessary.