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Better to be in some pain or better to up the dose of prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 21, 2025 | Replies (80)Comment receiving replies
I started on prednisone at 15MG a day for my PMR. I went from agony to feeling great almost overnight. It was great, amazing a miracle drug. Then after a couple few months the side effects started. You all know what they are. Then the taper began, 2 pills, then 1 1/2 and now I'm down to 1 MG a day and a Kevzara shot every two weeks. With each reduction in dosage, the pain started to return. I'm not sure how much 1 MG a day helps but I will find out in a couple of weeks when I go off completely and I'm worried. Don't get me wrong, the pain is not as severe as it was but getting up from sitting, in and out of bed and the car, all the stuff has come back. I was wondering the same thing as all of you about once I go off but I'm going to try as the side effects, well I just don't want them and what they have done to my body. I hope the Kevzara is enough!!
Replies to "I started on prednisone at 15MG a day for my PMR. I went from agony to..."
When did you start the Kevzara injections?
How long has PMR been treated with prednisone?
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A couple of things to remember ... Kevzara and other biologics take time to work. When I started Actemra injections ... my rheumatologist said I needed to give Actemra at least 3 months to work. I noticed an improvement after 3 months but I wasn't certain that Actemra was working.
The longer you have taken Prednisone ... the longer it will take to taper off Prednisone. This is because of how prednisone suppresses the production of cortisol by the adrenal glands. Adrenal suppression is why it is so difficult to predict how soon you will be able to taper off Prednisone completely. Low doses of Prednisone is where the tapering process becomes very tricky.
https://www.droracle.ai/articles/19822/is-prednisone-5mg-adrenal-suppressive
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In my case, I took prednisone for 12 years so it took me the better part of a year to get off Prednisone after Actemra was initiated. I was reasonably certain that PMR was controlled by Actemra after 3 months.
It took another 9 months for an endocrinologist to say my cortisol level was adequate. I had to stay on 3 mg of Prednisone for an extended period of time while my adrenal function was "sluggish." My endocrinologist said 3 mg of prednisone was a good "maintenance dose" for someone with adrenal insufficiency.
Based on the residual pain and discomfort that I attributed to adrenal insufficiency, I wasn't totally convinced that my cortisol level was adequate for at least 2 years after my first dose of Actemra. I had to resist the urge to take Prednisone again but I wasn't prevented from taking Prednisone again if I "felt the need."
It’s a hard balance- I have had pmr for nearly 3 years now and various ups and downs with the prednisone, one of which was when I got down to 1mg and then took the leap to zero I had a really bad relapse and needed up back on 10 eventually to get mobile again! I’m in my 50s and was really fit when I was diagnosed (for context) and now I’m taking 4mg and sometimes 3.5 but after a few days of that I am all achy and tired which obviously affects my ability to work. However it is a bit different for you as you have the other medication as back up so you might have more success! I really hope so!
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I've read that people differ in the mix of inflammatory substances that cause PMR. Kevzara and Actemra block IL-6, which is one of the those substances. According to Google, "other cytokines like IL-1, IL-17, and TNF-alpha are also implicated." So depending on your mix of inflammation, Kevzara might not be completely effective.
I take Actemra and 1 mg of prednisone to treat PMR and GCA. I haven't had any pain since I started treatment 13 months ago. My taper plan is just like yours, where I stop prednisone in 2 weeks.
It' sounds like your PMR is still active. A low dose of prednisone, maybe 3 mg per day, might not be too bad as far as side effects. I felt like most of the prednisone side effects had faded away for me at that level.