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"Evolution" of Seronegative RA into PMR
Polymyalgia Rheumatica (PMR) | Last Active: May 30 8:30pm | Replies (31)Comment receiving replies
So you’re in the predator camp like her…I backed off talking about the pred vs. methopristone with my daughter because she is so wedded to the pred (she’s been on (a tiny rx) for over a decade without a definitive RA diagnosis until last week. She got really fat from it, and even took her cat’s steroids when one doctor cut her off it abruptly! She seems emotionally and physically wedded to pred. Her new doc is weaning her off it now and she’s miserable. Can’t use her hands this week. She’s terrified of the methopristone (Dr. Google makes it sound like a witch’s brew) and will not countenance discussing pros vs cons of both with me. Today I succeeded in just listening to her anger at the doc’s plan for putting her on meth and stopped trying to get her to a more objective place. In spite of her fear I convinced her to at least keep her next neurology appointment in June and use it as a sounding board for her fears of the changeover. The more she read about meth the more contrarian and anxious her attitude has become-says she’s on the fence but is observably ready to say to hell with it, leave me on steroids. I’m resigning as anything but a listener…I’m not qualified to cheerlead for meth and I can only hope her brisk-style neurologist is sensitive enough to keep the switcheroo from seeming like a pro forma (here’s what we always do) plan-it does seem seem like it’s off with the predator, on with the meth, live with the side effects, and then let’s hop to biologicals for $30,990/year? The apparent rote-ness of the neurology community’s “here’s how we all do it” plan engenders mistrust.
She’ll be joining this group-can you believe she’s been reading Reddit groups?! I’ve given her the Mayo info instead-thank you all for this transition trying time! Hope you can help her as you have me…
Replies to "So you’re in the predator camp like her…I backed off talking about the pred vs. methopristone..."
Sorry ... I don't advocate for prednisone at all. I would want people to discontinue taking prednisone as soon as they can. Has your daughter been diagnosed with polymyalgia rheumatica (PMR)??? Why was prednisone started in the first place?
I don't have RA so I don't know exactly how people with RA progress to other options.. As far as I know, methotrexate is one of the first things that is tried. Few if any doctors want their patients on long term steroids but in the short term Prednisone works well. The long term side effects of prednisone are a real problem. The instant gratification of pain relief is a positive reinforcement to continue taking prednisone. However, prednisone isn't the miracle that people think it is. The real miracle only happens when people can discontinue Prednisone.
There are arguably cases of people having an "addiction" to prednisone but mostly people just want something that reliably relieves their pain. While prednisone itself is not addictive, some people who use it over an extended period may develop physical dependence. Physical dependence means that the body has adapted to the presence of the drug, and abruptly discontinuing its use can trigger the presentation of withdrawal symptoms and/or adrenal insufficiency. Trying to stop taking prednisone can be worse experience than the condition being treated ... I think.
People treated for PMR/GCA are started on prednisone and are told they will need it for a year or two. It is like a miracle because the pain is relieved quickly and reliably. Prednisone does improve their "quality of life" in the short term. However long term use of prednisone caused a deterioration of my quality of life. The struggle I had was finding something that relieved the pain when I attempted to stop taking prednisone. Methotrexate hasn't been shown to be as beneficial to PMR sufferers as it has been for RA sufferers.
When methotrexate doesn't work for people with RA, they have other options.
When methotrexate doesn't work for people with PMR , there aren't many alternatives.
I was willing to try any alternative to prednisone because I knew prednisone wasn't good for me in the long term. People tend to not be open minded to alternatives simple because there aren't many alternatives to Prednisone for the treatment of PMR. I was fortunate that a biologic worked for me. I have been off Prednisone for 3 years and counting and my quality of life is improving.
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Prednisone not predator! Typo