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Tapering and Dealing with a Flareup
Polymyalgia Rheumatica (PMR) | Last Active: May 30 12:11pm | Replies (32)Comment receiving replies
Thanks @dadcue - that really helps me as it sounds familiar. I saw lots of people increasing their dose or going back on for a week or two and I worried about that for two reasons. First, you have to get the inflammation down but second, if it is nothing like full blown PMR then that’s dangerous territory. It’s a very dangerous drug but of course is the only thing that works for the real PMR. As noted, we are nearly all getting on in years when we get this so it’s hard to separate aging stiffness from what might be a flare. I’ve avoided taking anything other than Panadol 3 times in the last six months when it was needed to move without fear of aches and stiffness at a funeral and when travelling. Otherwise I’ve found that as hard as it is to get going some days exercise is the best medicine, if you can manage it. It helps osteoarthritis, which I have, although mildly. I guess it’s a personal choice but I listen to my GP. Markers are completely normal. When I was in agony they weren’t. So, for me, blood markers are the key. My husbands aunt had it in her 70’s and lived to 100. That was even after they gave her a ridiculously high dose at first of 60mg (now the standard is 15mg) and caused her to have a mini heart attack. As I say, it’s not a drug to play with at all.
I’m so thankful for all the responses as I can now trust my own instincts, as others have done.
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I think trusting your own instincts is the best you can do. I don't think there is any exact way to know if anyone is having a PMR flare or not. I know there are many things that hurt just as much if not more than PMR. I also know prednisone will relieve symptoms of things that aren't PMR. That was my personal experience.
It is easier for me to say this now because I'm off prednisone and my pain is tolerable. I'm still being treated for PMR but not with prednisone. I'm now aware of medical problems I have that aren't PMR so I still have pain. When PMR was part of the equation, I didn't know about some of the other problems I have. There was also pain caused by my body trying to adjust to a low dose of Prednisone that wasn't PMR but still hurt.
When I had to cope with intolerable pain --- something needed to be done. The pain mostly happened in spite of my best attempts to taper slowly off prednisone. I could only tolerate so much pain. Lacking information to the contrary, I had to assume it was a PMR flare. Many times it was just my guess because I didn't call my rheumatologist every time that it happened. My rheumatologist could have evaluated me, ordered labs and other tests and it would have been better than my guess.
My main concern is about people on the internet who give medical advice and undermine the medical advice people receive from their doctors. People have said my rheumatologist is an idiot and I should take more Prednisone. I didn't need any help and support to take more Prednisone. Taking more Prednisone is the easy and popular thing to do. Tapering off Prednisone was much more difficult for me than increasing my dose.