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I was diagnosed with PMR June 24 and began Prednisone 15mg x1 month. Saw Rheum and began weaning schedule: 12.5mg x 2 weeks, 10mg x 2 weeks and then
decreasing by 1 mg every 2 weeks. I did fine until I got to 3 mg. I developed one sided hip/buttock pain, L thigh pain. The pain has been significant but has me uncertain if this is a flare of my PMG as the sites of my pain are not the same as where they were in my initial diagnosis ( wrist, shoulders, hip all bilateral). I increased my Prednisone to 4mg but increased again to 5 mg after just a few days. Its been a week at 5 mg with minimal improvement. Should I continue or increase Prednisone or assume my pain has another cause? Thanks.
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I was not aware that ACTEMRA was restricted? When did that happen? I had no problem getting access to it. In fact through my AETNA insurance I had access to CVS special and was able to get up to 3 months of supplies sent to me. It turned out I was allergic and donated the remainder to my Rheumatologist
"Restricted" isn't the right word for it in the USA but maybe it is restricted in the UK and other places by their governments.
Most medical insurance policies in the USA say medications can only be used for an FDA approved diagnosis. This rule is selectively applied to the more expensive medications. Medications are deemed to be "experimental" when there is no research evidence submitted to the FDA that they work for each specific diagnosis.
Older medications and the less expensive ones aren't scrutinized as much. "Off label" uses of medications is a common practice when the medication is deemed to be medically appropriate. It somewhat depends on the insurance company compared to the government.
I don't think Prednisone is "FDA approved" for PMR or any diagnosis but it is widely used.
In theory I guess they are right but as far as I am concerned it has not been anything but beneficial. 10 years of taking it at low doses. Would I like to be off ? You bet but I would be in pain so this is not bad.
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1 ReactionMy CRP was 11 the last time it was checked. I don’t know what the SED rate is. I’m feeling pretty good on 7.5, but not good enough to say I’m in remission. The mornings are still rough. Is anyone else losing their balance? I’m still doing balancing exercises every day along with stretching exercise and still I can’t walk straight.
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1 ReactionMost references would characterize a CRP of 11 as “high”. Also…some minor dizziness, fainting, and lightheadedness might be expected as you taper, but they are also the symptoms of adrenal insufficiency caused by tapering a bit too fast. I am not suggesting that you are experiencing any particular thing, but I would recommend that you see your doc soon to discuss. Best of luck sorting this out.
My understanding is that tapering too fast can cause "prednisone withdrawal" symptoms which are different to adrenal insufficiency. Adrenal insufficiency can emerge when you've reduced prednisone to the lower end of what your body needs of cortisol and the adrenal glands haven't kicked fully back into cortisol production yet.
megz: Agreed in principle, but there might be differences in our individual chemistries that could mean that he/she is already at a point where cortisol production is needed and is not there. I do not think that there is any consistently predictable dose below which cortisol needs to be there. The doc should be digging into this, in my opinion, with an open mind. As we always agree, one size does not usually fit everyone. I do appreciate your thoughts.
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1 ReactionThank you for the info! My CRP was 80 last year, so I guess 11 would be a good thing. I wish my sleep pattern wasn’t so messed from the prednisone though. My doctor decreased the dosage last week because the side effects were too extreme, anxiety, irritability and less sleep. Also, my BP was climbing. it’s a medication game we’re playing here!