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Has anyone successfully weaned off prednisone without using a biologic
Polymyalgia Rheumatica (PMR) | Last Active: Aug 25, 2024 | Replies (32)Comment receiving replies
I have been on prednisone for 4 years and have recently changed rheumatologists due to the previous one relocating. Progress had been made in reducing dosage from 20 to 8 mg during that time. The new specialist plans a more aggressive reduction schedule. The first change was to drop to 7 mg and stop the Hydroxychloroquine completely. The effect on my mobility of the first drop was nominal. But after two 0.5 mg reductions over 6 weeks, I am at 6 mg, but really suffering with the last step down. The last couple of days, I've had swelling around my knuckles, weakness in my grip, tingling in my hands, discomfort in my shoulders (causing restless, uncomfortable sleep) and during a 2 mile walk yesterday, soreness in my hips.
I'm sure each case is different, but need some sort of timeline on the progression path. Am I looking at a 6 month or 4 year objective? Even that would help with the mental health aspect of this affliction.
I'm scheduled for neck x-rays next week before my next appointment the following Tuesday. Perhaps, I'll know more after.
Replies to "I have been on prednisone for 4 years and have recently changed rheumatologists due to the..."
First I am in total awe that you can casually say you walked 2 miles. I have had a 1 mile goal for 3 years and am not giving up on the goal. I was diagnosed with PMR in early 2020 after being sick for one year without a diagnosis. Right now I am about at 0.2 miles, so in that way you are ahead of me literally by miles!
As for your effort to get off your PMR steroids. I would suggest you talk to your Rheumy but I would also suggest that you do not have to agree to drop to where you are having pain and then staying at that painful level. You are entitled to go back up to a pain free level then try again in 2-4 weeks to drop a little to see if you can now tolerate a lower dose. Everyone is different.
Long term steroids has multiple side effects that are real and if you have not already I would encourage you to talk with your PCP and your Rheumy to be tested for things like bone density issues, eye exam, blood sugar/blood pressure problems and possibly a few other known side effects. Among the side effects can be adrenal insufficiency, which you could easily be having based on your problems with dropping below 10mg of steroids. Four years is definitely long-term use of steroids and it may take patience for your body to embrace what you and your doctor have both intellectually embraced. Your mind may be willing, but your body is in charge!
As for how long it will take to feel normal again is a matter of what you are willing to accept as normal. If you have a long-term goal of getting off steroids and being pain free then stick with it. It may take a year, but progressed needs to be measured in 90 to 180 day intervals and not always 30 days. I see your progress as going from 20mg to 8mg and going off Hydroxychloroquine completely. Both of those are wins. Track your progress as well as your pain.
One other item, I went after many of my pains individually and discovered problems like osteo arthritis in my knees that have no relationship to PMR. Steroids would hide this problem. As I came off my steroids several problems showed up that needed to be addressed as unrelated to PMR yet masked by steroid treatments.
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Welcome @yertondg, Sorry you've had such a struggle with PMR and hopefully the new rheumatologist can help you taper off of prednisone. You are right that each case is different. My first time with PMR took 3 and half years to taper off with the last six months going back and forth between 1 mg and 1/2 mg until I finally could taper off and only have minimal aches and pain when I woke up in the morning that would go away as I started moving around. @dadcue and others may also have some suggestions for you.
There is a slow tapering plan that is listed on the HealthUnlocked PMR site that you might find helpful -
Dead slow and nearly stop reduction plan (DSNS - Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan
Do you keep a daily log of your level of pain when you get up in the morning and your prednisone dose for that day?