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Volunteer/Research Opportunities for People with PMR and/or GCA
I just attended the webinar I posted about previously. The webinar was sponsored by the Global Healthy Living Foundation. During the webinar they mentioned that they have an app for research about chronic diseases, and also for tracking symptoms. I just checked out their website, and it looks interesting. The app runs on Android, IOS, and in Windows as a website. You have to enter some personal information and medical information if you want to participate. They don't ask for SSN. You can follow up on this if you're interested. They research several diseases, including PMR and GCA. The website is https://patientspot.org, or you can look for the PatientSpot app in the Google Play or Apple stores.
The Vasculitus Foundation does research on vascular diseases including GCA (PMR is not considered to be a vascular disease). Their research organization is the VPPRN (https://vasculitisfoundation.org/treatments-research/patient-powered-research/). They do biannual surveys of patients with vascular disease where they track relapses and other information. They also do clinical trials and research surveys for people with vascular diseases.
For people who are not familiar with these organizations, these are two opportunities to contribute to research about your disease(s).
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Hi,
I attended too. I joined PatientSpot.org and it is very user friendly. Also it seems very valuable in that you can track your health via regular assessments and interact with others having chronic illness.
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2 ReactionsYou posted that PMR is not a type of Vasculitis. That is thought until I looked at the Vasculitis website. They list PMR an a type of Vasculitis. I’m confused
There is more and more recent evidence that PMR is not a vasculitis. There hasn't been enough time to update all the websites. Some people may claim PMR is a vasculitis based on outdated information.
Until all the evidence is presented one way or the other it is just my opinion that PMR is not a vasculitis. However PMR has some kind of relationship with vasculitis and especially GCA. The outdated view that PMR is a vasculitis stems from this close relationship with GCA.
Personally, I never thought PMR was a vasculitis but I don't know for sure. You can't disagree with self proclaimed experts who claim to know everything about PMR. I "respectfully disagreed" with one of the self proclaimed experts once. They said I was being disrespectful for disagreeing with them!
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3 ReactionsThanks
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1 ReactionYou're right, I misspoke about the Vasculitis Foundation. They do include PMR as a vascular disease. I think of PMR more as an autoimmune disease that attacks the connective tissue around joints, but PMR and GCA probably are a single disease.
PMR is an autoimmune disease that attacks "vascular" connective tissue around certain joints. I don't think that meets the criteria for a vasculitis that attacks blood vessels but it is debatable.
The whole debate is more about how autoimmune disorders overlap. It is the same with reactive arthritis and uveitis. They are associated with each other too but nobody is absolutely certain why they are associated. The uvea is a vascular organ of the eye that becomes inflamed so maybe it is a vasculitis too.
Reactive arthritis attacks the entheses which is the point where tendons and ligaments attach to bone. Healthy entheses are largely avascular, or lacking in blood vessels, particularly at the point of insertion into the bone. However, the surrounding areas—such as the synovium, bone marrow, and the tendon or ligament itself—are vascularized.
I think PMR has more in common with inflammatory arthritis than it does with vasculitis.
https://pubmed.ncbi.nlm.nih.gov/27384410/
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Enthesitis in addition to bursitis and synovitis which are characteristics of PMR are also characteristics of inflammatory arthritis. While bursitis and synovitis have been recognized in PMR, more recent evidence of inflammation at tendinous attachment sites (enthesitis) in PMR patients has suggested a broader inflammatory process than previously thought.
Good luck with getting a "whole body" MRI that might settle this debate.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4680120/