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Diagnosed PMR 2017, can I get off prednisone?
I am 5 foot 2 inches, European descent, female. I was diagnosed with PMR at age 55, after completing Chattanooga Ironman 2017. I was taking second dose antibiotics for bad sinus infection at the time of Ironman race. Shoulder and hip joint soreness and stiffness wouldn’t go away after race. Went to my general practitioner and then assigned rhuemotologist in December 2017. Went through regiment of prednisone from 15mg/day down to 3 mg/day over 2 years. I reduced prednisone amount to 1.5 mg/day over next year. Rhuemotologist informed me not to reduce further. I’ve been on 1.5mg/day prednisone since 2020. I have not had a PMR relapse since diagnosis. I have completed 26 marathons, ten 50km trail races, one 12 hour run and two 100 mile races (2024 and 2025) since being diagnosed with PMR. I also completed 10 day hike, Tour Mont Blanc. I would like to get off prednisone and my rhuemotologist doesn’t want me to do this for concern I may have relapse of PMR or develop giant cell arteritis. Rheumatologist will not help me get off of prednisone. I am concerned of effects of prednisone over time on my immune system and bone density. I eat very healthy, get my sleep, do not drink or smoke, and would like to get off prednisone.
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@stonewheel
It just means that doctors will often introduce steroid-sparing medications at some point in time when the duration of being on Prednisone gets too long. Doctors believe that the longer the duration gets and the higher the cumulative dose becomes then they need to do something to speed up the process to decrease the risk of adverse effects from prednisone. The time they usually start trying other things is after the first flare.
Patients, on the other hand, are told on forums like this to slow the taper down every time they have a flare. I don't think anyone really knows when a taper is going to be too fast or too slow. I just know some people do just fine tapering off Prednisone a lot faster than I did.
My rheumatologist wanted me off prednisone a lot sooner but I didn't perceive that being the same as telling me to taper faster. The thing was ... I sometimes tapered incredibly slow and other times rather fast but it didn't make any difference because a flare always seemed "inevitable." That is why I firmly believe there isn't any single way to taper off prednisone successfully that works for everyone.
I was told when I was diagnosed with PMR that I would need to take Prednisone for a year or two. That sets an "expectation" that is unrealistic because some people taper off Prednisone in less than a year or even faster. There are other people on Prednisone for 5 years ... 10 years or even longer.
I wasn't a novice at prednisone tapers when PMR was diagnosed. I had my experience with reactive arthritis and uveitis which I treated for 15 years before PMR. My reactive arthritis flares and uveitis flares in particular responded very quickly to Prednisone the same as PMR does. The condition being treated makes a difference in how fast a patient can taper off Prednisone. When I treated flares of my other autoimmune conditions, it was routine for me to start on 60 mg of Prednisone and taper off in a month. I didn't think PMR would be any different. I was skeptical about needing Prednisone for more than a few months let alone for a year or two.
After Actemra was started, I only knew that a slower taper might work better because I had to allow 3 months for Actemra to work. I didn't know what to do after three months. I didn't know if Actemra was working or not. When I tapered by 1 mg per week my motivation was to get the "inevitable flare" over but a flare didn't happen. I could have continued tapering by 1 mg per month which might have been too slow for being on Actemra. I had no idea what would be too fast or too slow after Actemra was started. When I was on 3 mg with a low cortisol level, I was told that I should NOT taper at all. It is just another example of not knowing if a taper is too fast or too slow because sometimes no taper is the prudent thing to do.
The clock was ticking the whole time I took prednisone for PMR. The adverse effects increased the longer I took prednisone. I didn't have so many adverse effects from prednisone when I could go from 60 mg to zero in a month for my other autoimmune conditions. I just think there is a ticking clock when we take prednisone for a long time for PMR and eventually an alarm will sound and something bad might happen.
Sometimes I never know how much I have written until I get to the end and scroll up 😄
@johnbishop
Thank you. It’s always interesting to see how others deal with the dose of prednisone. Yes, I am very fortunate to have been seen by a wonderful rheumatologist when first diagnosed and I am very thankful for a supportive GP. It seems that many have doctors who don’t seem to understand the condition and often push them to taper the dose far too quickly with the inevitable results.