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Has anyone successfully weaned off prednisone without using a biologic
Polymyalgia Rheumatica (PMR) | Last Active: Aug 25 9:46am | Replies (32)Comment receiving replies
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?
Replies to "Welcome @yertondg, Sorry you've had such a struggle with PMR and hopefully the new rheumatologist can..."
This is inspirational. I got down to 1mg but also had those minimal aches that quickly went away but I thought we were supposed to feel zero pain so I ignorantly went back to 10mg and am now tapering again.
Did your morning short aches ever permanently go away?
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@yertondg
I posted a video about the "gold standard" for tapering off prednisone for the treatment of PMR. The take away from the video is that there is NO gold standard for tapering off Prednisone for PMR.
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The 7 mg dose of Prednisone is a tough hurdle to overcome. Maybe inquire about something that doesn't suppress your adrenal function instead of Prednisone. The symptoms of adrenal insufficiency from long term treatment with Prednisone get more and more apparent after you reach that 7 mg barrier.
I took Prednisone for 12 years to treat PMR. I tried several Prednisone sparing medications until a biologic called Actemra (tocilizumab) allowed me to taper off Prednisone in less than a year. It might have only taken me 3 months to taper off except I needed to wait nearly a year for my cortisol level to improve.
I have currently been off Prednisone for the last 3 years.
I personally think 4 years on prednisone is long enough. There comes a time when a different approach to the treatment of PMR is needed.
There is a similar biologic called Kevzara (sarilumab) that was recently FDA approved for PMR.
https://www.kevzara.com/pmr#:~:text=KEVZARA%20is%20the%20first%20biologic,KEVZARA%20is%20not%20a%20steroid.&text=KEVZARA%20may%20help%20relieve%20signs,a%20tapering%20dose%20of%20steroids.&text=Join%20the%20KEVZARA%20mailing%20list,you%20get%20started%20on%20treatment.
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There is another discussion about the history of PMR from past to present that you might be interested in.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/?pg=2