1. < Polymyalgia Rheumatica (PMR)
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PMR - What do you wish you had known . . .

Posted by jabrown0407 @jabrown0407, Jun 21 11:15pm

Each of us has been on a journey with a disease that is not well understood, common but not identical symptoms and the steroid treatment is scary and problematic with its own side effects.
What is the one or two things you wish you had known early on that helped you put the pieces together and helped you better understand what is going on with you and your body.
Please share so we can learn from each other.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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tweetypie13 | @tweetypie13 | 6 hours ago
In reply to @wendybfrompgbc "I wish I knew what I was getting into when I started meds for PMR .I..." + (show)
Profile picture for wendybfrompgbc @wendybfrompgbc

I wish I knew what I was getting into when I started meds for PMR .I would not have taken the treatment .Over 5 years of medication and now off Prednisone for about six weeks I am in agony. There seems no end to it and I am so depressed I can barely function.I hope the end is near

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@wendybfrompgbc ask your dr abt biologics….Kevzara got me off prednisone and I have no side effects from kevzara 🙏

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jabrown0407 | @jabrown0407 | 5 hours ago
In reply to @wendybfrompgbc "I wish I knew what I was getting into when I started meds for PMR .I..." + (show)
Profile picture for wendybfrompgbc @wendybfrompgbc

I wish I knew what I was getting into when I started meds for PMR .I would not have taken the treatment .Over 5 years of medication and now off Prednisone for about six weeks I am in agony. There seems no end to it and I am so depressed I can barely function.I hope the end is near

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@wendybfrompgbc I hit 6 years this Spring and I'm not seeing an end. I went to a major teaching hospital out of state and they Dx GCA. I am totally asymptomatic.
You might want to talk with your doctor about PMR taking so long to blow over. PMR is suppose to burn out in less than 5 years. They did a PET scan to find my GCA since I had no temporal symptoms.

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