Better to be in some pain or better to up the dose of prednisone?

I spent 3-4 months chasing my pain going up and down with my prednisone dose. I was having a tough time sustaining a dose of less than 1.5 mg/day. At my last Rhuemy (PA not Dr.) visit he commented that his patients are generally ok after a year on pred, I was at 15 months at the time. He said you may be dealing with something else causing pain besides PMR. He prescibed PT to help regain muscle tone. I have yet to start PT but decided I would stop taking Prednisone and see what happened. I tapered from 1.5 to 0 in a few days. It's been a week ad I don't feel any different from when I was taking 1.5 mg/day. Very happy to be off of pred and looking forward to building myself back to what I was prior to PMR.

That's an exceptionally good result and I agree that it is what we would all hope for in terms of remission. For many of us though the doctors see remission as normal inflammatory markers and drop the dose by 10% or more (say from 15 mg to 14 mg) and quickly the inflammatory markers shoot up again. In my case I went from 10 mg (after months of successful reductions) to 9.5 mg and CRP went from normal to 28. I am now back up to 16 mg after 3 months of increasing the dose to try to get the inflammation markers back to the normal range.

I would wonder if you were ever on a high enough dose for long enough to beat it down so you could taper more successfully.
It is a tough game, for sure, and there is no standard game plan works for everyone. Good luck !

"It is a tough game, for sure, and there is no standard game plan works for everyone"
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You sound like my ophthalmologist and his approach to uveitis flares. In the beginning we started with steroid eye drops and added more and more eye drops as needed. Then we switched to low dose Prednisone. After I started low dose prednisone, I would increase by 5 mg increments all the way to 100 mg. That game plan never worked well.

My ophthalmologist said we needed a new game plan. We were going to "hit it hard" with 60 mg at the start of uveitis. If 60 mg didn't work right away then I needed to try 100 mg. He knew 100 mg of prednisone was my limit. He said we might need to try a different tactic after that.

Fortunately, uveitis responded quickly to high dose prednisone at the start followed by a fast taper. I didn't ever use the other tactic. My ophthalmologist said he had bigger guns that involved injections and infusions if 100 mg of prednisone failed.

The game plan sounded more like a war plan for stopping uveitis inflammation.

My rheumatologist wasn't as aggressive in her approach to PMR. She referred to a "stable dose" for an "extended period of time." That was a long war of attrition until we tried a "new approach" 12 years later. The new approach was tried after several reinforcements like methotrexate and leflunomide failed.

Actemra was more effective for my war on inflammation and there is less collateral damage to my body. Actemra is now my only defense against inflammation which is retreating.

Likewise. Rather than decreasing prednisone @ 0.5 mg/week I took a tip from one of our readers who established a pattern that worked for her. I think her pattern was a bit more complex but I tried this: say prednisone level is 7.5 mg., my taper was @ 3-4 days 7.5, then alternating one day 7.0, next day 7.5 for 3-4 days before stepping down to 7.0 for 3-4 days. It seems to have worked until now when I'm at 5.5. Now I wake up stiff, I'm fatigued and light-headed, brain fog requires I slow down my mental processes and double check my work to avoid grievous mistakes, fatigue lasts all day from the time I wake up. It takes all my energy to get through the day. I am sleeping better, but added rest doesn't seem to help.

I am thinking what may be needed is more exercise. It's gardening season and I thought that would do it. Not so. I am trying to work in walking or water walking or floor stretches, incrementally. It seems to me at this point the struggle is to add more activity--but not too much; decrease dosage--but not too fast. I'll keep at my current level of prednisone until I feel well enough to taper again, adding in a little more activity as I go. AND watch the sugars! Old habits sneak back in. Back to a more strict Mediterranean Diet.

Sidenote regarding pain management, there are some naturopathic pain remedies out there. I don't recommend visiting with a clerk in a health food store but rather a full consultation with a trained health practitioner. Mine did some research and took me off Turmeric-curcumin as it counteracts prednisone, she reported.

Starting at 5, my taper was reduced to 0.5 per month. I successfully got to zero using that metric. Pains were intermittent, few, random, and not PMR, so Tylenol became my friend. I did not ever change the daily dosage of prednisone. When I arrived at 2, doc also approved low-dose ibuprofen as needed. Good Luck!

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!!

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.

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!