Prednisone Taper Stories

I was diagnosed a little over 6 months ago. Doc started me at 15 mg and held me there for two months before tapering 2.5mg per month. All was good until this month. I got down to 7.5mg, and I began occasionally feeling the familiar/unique PMR twinge in my left shoulder. Not a pain level even close to impacting my activities or quality of life, but it served as a reminder that the PMR is still lurking in my body. Sure enough, after a month at 7.5mg, my C-Reactive Protein test showed a slight rise to just above the normal range (Sed Rate test remains normal). Doc held me at 7.5mg for another month in light of the slight rise in inflammation markers.

@dadcue Motivation isn't a problem for me. I've been running for almost 50 years, with some of it at a fairly high level. Over that time I developed very strong habits, like working out regularly and eating right to support my running. I exercise some every day, and it never occurs to me to not exercise, just because it's such a habit. I either walk 4 miles or run 3 to 3 and a half miles with some walk breaks. I lift weights and stretch every other day. I've got a good collection of clothing and gear for bad weather, so I very rarely need to miss a day for weather. I'm seeing very slow improvements in my running, both pace wise and endurance wise. It's just a little discouraging at the slow pace of improvement. It could be age, or the GCA and PMR could still be active, or it could be the Actemra, or something else, like vitamin deficiencies.

I would recommend trying to establish a habit of exercising. Make it as enjoyable as possible, and try to eliminate potential excuses. Some people do better by exercising with other people. I really enjoy being outside and observing nature. I usually run and walk around a small lake, and there are seasonal differences with birds, wildlife, and vegetation.

@janb62 I asked my Rheumo about an ultrasound because I had read about that and he claims not many people do them and there's only one guy in the area I live.

@jeff97

I have a Forest Gump philosophy about running. He felt like running but Forest Gump stopped when he didn't feel like running anymore.

"That philosophy embodies the essence of "running for the sake of running"—finding joy, peace, or release without needing a deeper purpose or external motivation. After running for 3 years, 2 months, 14 days, and 16 hours, Forrest stopped because he was "pretty tired" and simply felt done. It is a reminder to listen to your body and mind, embracing the freedom to start and stop on your own terms."

I think this philosophy also explains how PMR interrupted everything ... or maybe it was Prednisone ... I don't know. I didn't stop exercising as soon as PMR was diagnosed. I continued to work and I exercised. I was doing a 50 mile bicycle ride 5 years after PMR was diagnosed. I was on a higher dose of Prednisone when I hit the proverbial wall. I think the wall came tumbling down and I felt like the wall fell on top of me. It was all downhill after that but not in a good way.

Actemra has removed the wall that buried me but I still don't feel like running. I do walks and sometimes I get the urge to run but it doesn't feel like I'm running or anything that resembles running. I guess 15-20 years will do that to a person. I still get the urge but not like I used to.

@dadcue I guess I was lucky. I never had to stop exercising either before or after being treated for PMR and GCA.

Hello to All. I am an 80 year old patient with many health concerns; however, PMR along with neuropathy can be very upsetting due to the pain. I was diagnosed with PMR 10 years ago and on Prednisone since that time. My Rheumatologist decreases my dose periodically down to 5 mg. daily, then to 2 1/2 mg., then to 1 mg. and then I am off. This lasts for about 2 weeks and he increases to 5 mgs. and leaves it at that level. I still have pain and stiffness; but, it is not as severe. I am told that many people with PMR remain on a continued low dose forever.

@slynne12
Ask,your Dr abt the Biologic Kevzara……it helped me tame the inflammation and get off prednisone.
Also, have you tried Tylenol for Arthritis as a supplement to thr low dose prednisone ? Worked for me. 🤞
I am a 79yo female.

Everyone is different. Everyone tapers differently. Prednisone conceals pain and so when you taper, orthopedic pains may appear that you forgot you had or you did not know you had while you were on steroids. As you taper, it is easy to confuse re-emerging PMR pain with emerging orthopedic pain. One way to tell the difference is to get X-rays of your affected areas to determine if you have osteoarthritis as well as PMR and if you do, whether it may be the arthritis not the PMR that is the source of your pain. I have never been "pain free" as I taper but I have recently learned the pain I experience is from arthritis in the hips and stenosis of the spine and not from PMR. I take 1000 to 1500 mg of acetaminophen to control the arthritic pain while I taper from prednisone with the help of Kevzara.

@pah17 Hi there. I had an ultrasound to check for GCA right after my PMR diagnosis but because I am already blind in one eye my doctors were extra careful about the potential risk to my remaining eye and started me on 60mg of prednisone and performed an artery biopsy out of an abundance of caution. Thankfully they have officially ruled out GCA, but I'm glad we went the aggressive route for peace of mind. Wishing the best for you!

@dadcue
It takes a lot to feel like exercising after PMR. I’m off prednisone for a week and a half and just on Kevzara. I’m waiting for my energy to return but the fatigue just makes me lazy. I hate this lifestyle and hoping that it’s just my body adjusting to life without prednisone. I do walk but it’s not enough to maintain this 78 year old body. Need to get back to more intense activity.