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Upcoming PMR Webinar at 6:30 eastern on Thursday 9-18
I saw this posted on another support group. You have to register (free) for the event.
Here's the description:
"Unpacking Polymyalgia Rheumatica: Expert and Patient Insights
In this special episode of The Health Advocates, we take a closer look at Polymyalgia Rheumatica (PMR), a condition that affects tens of thousands of older adults each year in the U.S. but is often misunderstood. Host Steven Newmark is joined by GHLF’s Angela Degrassi, patient advocate Eileen Salsman, and two leading experts — Dr. Leonard Calabrese and Dr. Jeffrey Curtis — to unpack what PMR is, how it impacts daily life, and why a patient-centered approach to research and care is so important. Together, they explore symptoms, diagnosis, steroid treatment challenges, and emerging insights from new research and lived experience.
Special note: We invite you to a live webinar on Polymyalgia Rheumatica (PMR) that will explore critical gaps in diagnosis and disease monitoring.
Date and time: Thursday, September 18th at 6:30 PM Eastern"
Here's a link to the description and registration link. You have to scroll down a little.
https://ghlf.org/the-health-advocates/
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Does it seem like PMR/GCA is getting more attention now as compared to 10 years ago or even 5 years ago?
I remember when I was diagnosed with PMR more than 15 years ago there was a scarcity of information. Hardly anybody in the medical community was interested. I do know much of the information I received early on wasn't even true. Much of the early information I received came from "experts" who claimed to know but really didn't know much of anything about PMR and GCA. They knew even less about the side effects from "long term" prednisone use and how to taper off. The latter is still a mystery.
Identifying what the condition is and finding better treatment options while acknowledging that the experience of side effects from prednisone and difficulty with tapering is real might be a helpful first step in finding more reliable information.
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7 ReactionsThank you for sharing this event. I have just been diagnosed after 4 months of muscle and joint pain. I did not present as a classic PMR patient because my inflammatory markers remained normal and my pain was just in my hips and thighs at first so my doctor thought I had muscle injury. Prior to onset I was extremely active, then woke up unable to get out of bed due to the pain. A month ago the pain and stiffness moved to one shoulder, then neck, finally into the other shoulder. I look forward to learning as much as I can about how to manage this condition.
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5 ReactionsThank you, Thank you, Thank you! I plan to register for this but I know I most likely will not be able to attend because I will be traveling. I'm going to try and I hope by registering I can get on an email list that will provide other insights and education.
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2 ReactionsThank you. I have registered and did post a question also. 🙏☺️
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1 ReactionSometimes if you register for something and can't attend the presenters provide a link afterwards to a recording of the session. Maybe that will happen with this one.
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1 ReactionI registered but did not receive a followup email with a link to attend the meeting. Hopefully it will show up before the meeting.
Yes, the same thing happened to me.
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1 ReactionI tried to register but the link took me to a different webinar on the same date. Not the one described.
I feel your pain. My ESR/CRP were normal. I was 98% incapacitated. The doc denied the possibility of PMR. Got a new doc pronto. Up to 20% of people with PMR have normal inflammatory markers. I discussed this with a rheumatologist friend who said that although your markers are within the normal range now, they could have been much lower in the past. Best wishes, feel better soon!
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2 ReactionsI signed up. Link does not come until later.
Great idea, and did submit. Question.
Thx for the heads up.