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Better to be in some pain or better to up the dose of prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 13 9:13am | Replies (36)Comment receiving replies
Unless it is determined that your PMR is in remission (typically determined by/confirmed with SED/CRP testing), continuing to taper is almost guaranteed to result in ongoing PMR pain.
One usually stays on a dose that completely controls PMR pain until the inflammatory tests return to normal levels. For you, that dose might have been 10, and you might have started tapering prematurely, before your PMR was in remission. Or, in your haste to get off of prednisone, you tapered too quickly. Or, you are tapering without waiting to determine if hydroxy is going to work. Below 10, tapering at 1 per month seems to work for most folks. Below5, at 0.5 per month. But all that presumes that your PMR is in remission.
Good luck.
Replies to "Unless it is determined that your PMR is in remission (typically determined by/confirmed with SED/CRP testing),..."
My rheumy wants me off prednisone (me too) so has prescribed tapering from 10mg, 1mg every 2 weeks and before that from 15mg, 2.5mg every 2 weeks. I had relief at 12.5 and some at 10mg.
She suggested I go on leflunomide and I declined that option because of side effects and bc I read it could take up to 2 years to leave my system. After reading others who had relief with hydroxychloroquine, I asked to try that which I’m presently on but so far no results.
I can safely say, I’m not in remission but still following docs orders with tapering although I may slow down the tapering to 1se a month. Dunno. I did read when someone went off prednisone, they went on ibuprofen with some relief. Before I was diagnosed (it took a few months to get an appointment), I was getting some relief on ibuprofen, that wasn’t much different than being on prednisone. Which is the worst of the 2 evils?
Unfortunately even this fairly safe approach can often fail as we have no way of truly measuring whether remission is occurring. Even if the CRP/ESR drop back to normal (as mine have been on many occasions) it can only mean that the current dose of steroids is the correct dose to control the current level of PMR inflammation. As soon as you drop by even 0.5 mg, the symptoms will return if the level of PMR inflammation then exceeds the steroid dose.
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"One usually stays on a dose that completely controls PMR pain until the inflammatory tests return to normal levels."
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My inflammatory markers were never normal on prednisone. My symptoms were mostly controlled if I took enough prednisone. I wasn't able to discontinue prednisone which was why PMR was called "refractory."
I don't know how to account for people who have normal inflammation markers but still have PMR. I believe they have PMR because they were diagnosed with PMR.
A funny thing happened when I started Actemra. My inflammation markers dropped to almost zero. I was concerned that my inflammation markers were "too low." I had never seen them that low before.
Someone tried to say my inflammation markers weren't reliable on Actemra but I don't have any PMR symptoms anymore. My inflammation markers went up again when Actemra was withheld for a longer interval but Actemra wasn't stopped. I had slightly more pain but not a flare. I assume they are monitoring my inflammation markers for some reason while I am on Actemra. My markers are negligible as long as I do another Actemra infusion within 6 weeks. My infusions are scheduled every 4 weeks.