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How does your pain come back when decreasing dosage?
Polymyalgia Rheumatica (PMR) | Last Active: 5 days ago | Replies (57)Comment receiving replies
@dadcue Mike, what is considered a relapse? When I had my first flareup, I could barely walk. This came on fast but was fleeting. The prednisne helped within 24 hours, I was our running and lifting again. I've run, walked and lifted through my entire taper. The pain began returning when I went under 10mg. I can stand a little pain. I can't stand the mood swings, loss of hair, etc of prednisone, so I kept tapering and am down to 4.5mg in 8 months so not fast but not slow .
Now I hurt my back, no doubt lifting my granddaughter, as I babysit her. I honestly don't know what to do now. I've always had trouble with my back and have had to go on muscle relaxers and ibuprofin for a few days to kick it out. Of course now I can't take the ibuprophin. The pain is lingering and I'm wondering if it is my usual back problem, something worse, or a flareup.
This disease is so frustrating.
And of course the wait to get into doctor is maddening.
Replies to "@dadcue Mike, what is considered a relapse? When I had my first flareup, I could barely..."
@cyndiefromnc I’m having same issue after a long drive
(6.5 hr drive down & then ; dats later 6+ hr drive back). My lower back vertebra does have some issues as I’ve aged. But it’s been feeling ok this year until the drive! I also lowered prednisone to 3.5 mg the same day as I started my trip.
So I don’t know if pain is from all that sitting (I did stop several times each way driving) OR is it the lowering of prednisone. I am so bummed.
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@cyndiefromnc
In my opinion, a relapse is a "significant" worsening of PMR symptoms. It isn't something that only requires us to increase our Prednisone dose by 1 or 2 milligrams . I consider it to be a flare of PMR if it only needs a small increase in our Prednisone dose. There might be bigger and smaller flares but maybe not a total relapse.
A relapse requires us to "start over" and we usually go back to whatever dose levels we needed originally to control our PMR symptoms. Otherwise a relapse happens sometime after we taper off prednisone but PMR returns for a second time.
It was way too easy for me to increase my Prednisone dose when I had any pain at all. I think we all need to "tolerate some pain." Pain has a purpose and it lets us know something is wrong. However, not all pain is caused by PMR. It is difficult to know when the pain is PMR pain or something else that causes pain. After we get diagnosed with PMR it is way too easy to lump all pain together and call it a flare of PMR or a relapse of PMR.
My best attempt at separating PMR pain from other types of pain was to call PMR --- "abnormal pain." As crazy as it sounds everything else I would call it "normal pain." I just got used to having pain but my rheumatologist didn't think my chronically elevated inflammation markers were normal when I was on 30 mg of Prednisone. That might be when PMR is "refractory."
Another problem was that I attempted to anticipate pain to justify taking more Prednisone. I continued to exercise vigorously after PMR was diagnosed. Exercise causes muscle inflammation and we all experience "sore muscles" when we aren't used to exercising. Exercise can also "aggravate PMR." If the pain persists and gets worse then eventually we might need more Prednisone.
Defining what PMR is initially is just as difficult as knowing what constitutes a flare or a relapse. Generally speaking it is all someone's guess because there isn't any criteria that defines everything well. It is very difficult to separate pain into categories of PMR pain and pain caused by something else. However, it is very easy to take more prednisone for pain and attribute it to PMR whether it is appropriate to take more Prednisone or not.
I don't think it is appropriate to take more Prednisone every time our muscles are sore. However, we get a positive reward to take Prednisone when the pain is relieved. It is like we get conditioned to take more Prednisone for any pain.