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PMR and Inflammation Markers

Polymyalgia Rheumatica (PMR) | Last Active: May 11, 2023 | Replies (30)
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@queenie2030

Thanks Grammy. I tried methotrexate but had to quit due to side effects and ended up back where I was before I took it. I have confidence in my rheumatologist and now he wants me to try Actemra, right now trying to get extreme back pain issues under control with a steroid injection on Monday. Also seeing endocrinologist in June for adrenal insufficiency which rheumatologist thinks I have. All of it is making me rather miserable but hopefully I will get some help soon.

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Replies to "Thanks Grammy. I tried methotrexate but had to quit due to side effects and ended up..."
sandiw77 | @sandiw77 | May 10, 2023

I have degenerative disc disease so I understand the back issues too. I hope that Actemra will work beautifully for you! ❤️

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DadCue | @dadcue | May 10, 2023

I was miserable on prednisone and my quality of life was deteriorating after 12 years of PMR.

PMR was diagnosed in 2007. I was familiar with prednisone for other autoimmune conditions because I was diagnosed with inflammatory arthritis with uveitis in 1995. I got fast relief and only took prednisone intermittently and short term for these conditions.

After PMR was diagnosed I started with 40 mg of of long term prednisone. After 5 years I was only down to 30 mg. My inflammation markers were rarely within the normal range.

Progress with reducing my prednisone dose was extremely slow. I was only able to maintain a dose between 10-15 mg after 12 years of PMR.

Maybe I was getting impatient but I didn't want to take prednsione for the rest of my life. That was when my rheumatologist suggested Actemra. I was able to taper off prednisone within a year of starting Actemra injections every 2 weeks. I might have tapered off sooner except an endocrinologist diagnosed adrenal insufficiency when I got down to 3 mg of prednisone.

When the endocrinologist said my cortisol level was marginal but adequate I was told to stop prednisone. Safeguards were in place in case anything happened and my adrenals couldn't keep up with my cortisol needs.

I had a setback when I had a flare of uveitis and needed 60 mg of prednisone. Actemra was stopped and different biologic called Humira was tried because it was "optimal" for uveitis. Unfortunately Humira was less than optimal for PMR because once again, I was unable to reduce my prednisone dose below 15 mg.

Actemra was restarted and Humira was stopped. I tapered off prednisone in 3 months the second time with weekly Actemra injections.

I have been off prednisone for 3 years. My quality of life has improved. Unfortunately, my lumbar spine has severe spinal stenosis. Surgery has been delayed several times. I was a poor surgical risk when I was on prednisone. I'm a better surgical risk on Actemra if I can go 2 months between Actemra infusions.

I'm in no rush to do a lumbar fusion. PMR is probably in remission. Inflammatory arthritis probably damaged my spine but Actemra seems to help that problem. The neurosurgeon doesn't believe that I'm not having that much pain.

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