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@dadcue ,@cgm
You know already that we are in that same boat, unfortunately.
I was diagnosed with reactive arthritis in my early twenties. Like you I was treated with a fast taper of prednisone. They also had me on Indocin and aspirin, cause in those days they did not have the biologics and medications they have now. I also had lots of physical therapy because I was a young mom and they were afraid my joints would stiffen up. I was lucky and all my joint issues cleared up and I was finally able to return to work a year later. And then I went into remission for 20 years! I also have osteoarthritis in my hands with a couple of nodes in my fingers.
PMR did not appear until I was 72( I just turned 75) and this is very different. I’m in my 2nd flare right now and my doctor wants me to take Actemra so hopefully I can get off the prednisone. I’m on 7.5 mg currently.
Replies to "@dadcue ,@cgm You know already that we are in that same boat, unfortunately. I was diagnosed..."
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For about 20 years, all I knew was to start with 60 mg of Prednisone and do a fast taper for 30+ flares of uveitis. The flares of uveitis occurred once or twice per year. I didn't need a rheumatologist for the pain caused by reactive arthritis because I had more than enough Prednisone prescribed by my ophthalmologist. This all started at the age of 32. I didn't have any difficulty tapering off Prednisone -- 60 mg to zero in 4-5 weeks was "normal" for me.
PMR was diagnosed at the age of 52 but not until 6 months after the onset of my symptoms. It took several rheumatologists to eventually decide my new symptoms were being cause by PMR rather than reactive arthritis. I was told reactive arthritis didn't go away and it was "unfortunate" that I also had PMR.
After PMR was diagnosed, I was told to find a "stable dose" of Prednisone that worked and I would need to take Prednisone for an "extended period of time." My new normal Prednisone dose started at 40 mg and the extended period of time was 12+ years.
I wasn't able to taper off Prednisone until after Actemra was tried. I had many flares at 7 mg of Prednisone but those flares were probably caused by adrenal insufficiency.
"When cortisol levels are low, inflammation can increase because the body lacks immune regulation. Cortisol is a hormone that acts as an anti-inflammatory, and when levels are low, the body can't regulate inflammation properly. This can lead to a chronic pro-inflammatory response, which can cause a number of health issues."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4263906/#:~:text=Cortisol%20is%20a%20potent%20anti%2Dinflammatory%20hormone%2C%20and%20its%20dysfunction,chronic%20pain%2C%20and%20salivary%20hypocortisolism.
Don't underestimate the effect that prednisone has on adrenal function and the HPA axis.
It is a pity how expensive Actemra is. I wish Actemra could have been tried sooner. There are currently two biosimilars to Actemra that are FDA approved. The cost should be decreasing soon.
https://www.centerforbiosimilars.com/view/fda-green-lights-second-tocilizumab-biosimilar
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If inflammatory arthritis like RA is a bigger problem then TNF inhibitors might also work. There are plenty of TNF inhibitors to choose from. My rheumatolgist says it is very difficult to adequately treat both PMR and inflammatory arthritis. Don't let anyone say you shouldn't try a TNF inhibitor because they won't work for PMR. It is true that TNF inhibitors aren't "recommended" for PMR. However, I think there are plenty of PMR sufferers who might also have inflammatory arthritis.
https://rheumatology.org/patients/tumor-necrosis-factor-tnf-inhibitors