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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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Thank you for sharing your long experience with PMR. It puts my 2 and a half years into new perspective. I too had uveitis years before PMR and short term prednisone took care of it. Have you had other procedures to help relieve back pain like injections, ablation, laser, etc. My pain doctor has a long list of things to try if the steroid injections do not give me relief. Surgery to be a last resort. I was told my back spinal stenosis and bulging disks is caused by arthritis. I plan to try Actemra probably starting in August. I am very glad to hear your positive experience with it. It is so encouraging to hear others experiences as we make decisions what to try next. I am looking forward to starting with an endocrinologist in June concerning the AI. I also have a sizable nodule on my thyroid that she is to address. I had a biopsy of it which was benign. Best wishes to you.