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PMR - What do you wish you had known . . .

Polymyalgia Rheumatica (PMR) | Last Active: 12 hours ago | Replies (72)
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Profile picture for grownupcf @grownupcf

@dadcue Thank you. And I'm sorry for the loss of your friend. Thankfully she left you with an important message.
I think both of my doctors are more aggressive on getting off prednisone, and after some time, I realized I needed to be as well. So jumped on the chance to take Kevzara. My optimism (and my partner's) was that it would work, and the prednisone would be gone, and we'd live happily ever after.

That could be the case. I just need to give it some time. I'm impatient. I lived with PMR for way too long before I got treatment and was hoping it would "go away in 2 years," which is what a doctor told a friend who has it. He is older and in a much different health space than I, but it was what I preferred to hear (and actually some of the first things I read without digging into the details).

Then my doctor enlightened me. As did this group. Grateful. ☺️

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Replies to "@dadcue Thank you. And I'm sorry for the loss of your friend. Thankfully she left you..."
tweetypie13 | @tweetypie13 | Jun 25 12:06pm

@grownupcf
An additional thought…..my Dr recommended Tylenol for ARTHRITIS as a supplement to the prednisone. So instead of taking more prednisone, I pop 1 or 2 Ty For Arth…can take up to 6 per day.
Now on Kevzara I take TY for A when weather affects it, or heading for a very active day (big hike etc,). I take only 1 pill as prevention 😄
HVE been off Pred for 11months.

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Mike | @dadcue | Jun 25 1:12pm

@grownupcf

She was a complete stranger to me. I never met her in person. She sent me her picture attached to some e-mail she sent so I would remember her. It was incredible some of the things she told me and how she described being in a coma. She said that she didn't want to return to the land of the living but was sent back for some reason.

The dialog I had with her happened about the same time as when I was very angry about having so much pain. I was ready to have a word or two with God because I thought so much pain had no purpose and was completely unnecessary and I wanted an explanation for it.

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