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Polymyalgia Rheumatica (PMR) - Clinical Trials

Polymyalgia Rheumatica (PMR) | Last Active: Mar 19 7:18am | Replies (12)
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@dadcue

It is sad there aren't more treatment options for PMR/GCA. I was told many times that prednisone was the "only option" or the "best option." I took prednisone for more than 12 years for PMR. I asked many times if there was "any other options." The side effects of prednisone were taking a toll on me so I was willing to try anything else.

My rheumatologist had to get authorization to try Actemra (tocilizumab). An exception was made for me because Actemra isn't FDA approved for PMR but it is for GCA. My rheumatologist thought Actemra should work for PMR but didn't know if it would or not.

Actemra worked for me and I was able to taper off prednisone in a year. My rheumatologist thinks I'm better off on Actemra and I would agree.

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Replies to "It is sad there aren't more treatment options for PMR/GCA. I was told many times that..."
nyxygirl | @nyxygirl | May 30, 2023

@dadcue your story is amazing ! Are you aware that there is June 8 deadline for "patient perspective " for the upcoming ACR meeting ? rheumatology-dot- org. annual-meeting-patient-perspectives

What Is Eligible for Submission?
Submissions should meet one of the following criteria:

Address the question: “What adaptations did you and/or your healthcare team adopt to better care for your health?"
Describe how you became more engaged in healthcare.
Demonstrate an idea that was put into practice, and how the idea resulted in improved quality of life.

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