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Polymyalgia Rheumatica (PMR) - Clinical Trials
Polymyalgia Rheumatica (PMR) | Last Active: Mar 19 7:18am | Replies (12)Comment receiving replies
@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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Thank-you but when I looked to find information I found the following:
"What Is Not Eligible for Submission?
Medication- or therapy-specific interventions will not be accepted."
The most significant thing that improved my quality of life was getting off prednisone. For 12 years, my life revolved around how much prednisone to take daily for PMR. My doctors helped me and encouraged me to keep trying to taper off prednisone yet they prescribed more prednisone than I needed. They didn't want me to ever run out. I'm grateful for the prednisone I received.
Actemra (tocilizumab) is an IL-6 receptor blocker that allowed me to get off prednisone. IL-6 is implicated in other autoimmune disorders so not just PMR/GCA. Now Kevzara is another IL-6 receptor blocker that was recently FDA approved for PMR.
I didn't think I would ever be able to get off prednisone. I tell my rheumatologist that taking prednisone was easy to do except for the long term side effects. Getting off prednisone was hard to do. I just wish that Actemra had been tried sooner because it made tapering off prednisone much easier. Actemra wasn't an option for me. Actemra was only FDA approved for GCA in 2017. I don't have GCA.
https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-specifically-treat-giant-cell-arteritis
It was my rheumatologist who thought Actemra should work for PMR and was willing to submit the authorization request to get it approved for me.