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PMR - Decreased prednisone and pain returned
Polymyalgia Rheumatica (PMR) | Last Active: May 28 1:36pm | Replies (157)Comment receiving replies
Your an asset to the PMR community in my opinion. I stay on these sites since as a caregiver I have time. I deal with the ravages of steroids every day watching my wife deteriorate. Her face is swollen, neck swollen, her skin is like a Georgia peach, 0steoprosis, who knows what else. She is on 1.5mg dex for the last 2 years and thats what has happened. I stopped 2 years ago. But in the last year I had 2 flare issues. Knowing what PMR symptoms were this time around I did a 5 day dose of dex starting at 4mg day 2 - 3mg day 3 and 4 - 2mg and day 5 -1mg. then stopped. No pain. PMR was gone. I used the thought it takes a week to stop cortisol production. They also prescribe 5 day packs for allergies and various other conditions. I am in the experimental stage so not sure if the PMR pain was still active what I would have done next. Gone to a stronger first day dose? Dex is about 5 times stronger than prednisone . so 4mg would be 20mg prednisone.
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You are a Saint for being a caregiver to your wife. I understand the ravages of steroids and they are widely used in neurosurgery. I have very mixed feelings. I had a hard time on another forum hearing how steroids are promoted as a miracle for PMR sufferers and the "only option." I think PMR patients should be clamoring for better options or nothing will ever change.
You might be interested in a dialog I had on another forum. The person who communicated with me was a Saint too. She made me aware of the consequences of long term prednisone use before she died of complications after an adrenal crisis. This conversation happened virtually about the same time my rheumatologist suggested I try Actemra. It was a low point in my life. I desperately wanted to be off prednisone and I was feeling down. I want people to hear her words about the
subject.
The flip side was another forum that promoted lifelong prednisone as a better option than Actemra. One person in particular wasn't very supportive. The other forum collectively of many PMR patients was great though. Unfortunately, the opinions were dominated by just a few individuals. This forum is truly an asset and much better because all viewpoints are respected.
I have posted the following discussion before but I don't know if anyone ever reads it. I think it is good information but I needed to rethink my opinions about Prednisone.
https://www.healingwell.com/community/default.aspx?f=16&m=4073463
Most doctors realize what happens when someone is on long term steroids. I can never "encourage" any person to take more Prednisone for any longer than is absolutely necessary. Then again, I took high doses of Prednisone for a very long time. I don't know what is the best thing to do. I will say, Prednisone prevented me from being addicted to narcotics so there are benefits to taking Prednisone.