It is interesting to see your experiences moving to the top of the thread from 2021 to now 2023. While neither my PCP mentioned "GCA" specifically they drilled down on those symptoms while I was being evaluated ( temporal headache , jaw, blurred vision ) and I certainly knew the (scary ! ) association of GCA and PMR by the time I saw the Rheumatologist.
Here is a manuscript I found with an interesting sections for everyone - especially about "medical cost burden" of PMR -
Feasibility and usefulness of a fast-track clinic for patients suspected of polymyalgia rheumatica: notes for a work schedule through a narrative review of published literature
first author : Elvis Hysa 2021 Rheumatologia; 59,5: 323: -329 Italian group
Medical costs of polymyalgia rheumatica Few literature data are available about the medical costs of PMR and the impact that the disease exerts on the national healthcare system. An American study was the first to report the financial burden of PMR; in particular, it was observed that individuals with PMR utilized a significantly greater number of outpatient and laboratory services compared with age- and sex- matched controls. More specifically, the authors evaluated that the additional total cost over 5 years ranged from $2.233 to $27.712, respectively, being the 10th percentile and 90th percentile [45].
here is another one of their findings :
Additionally, a key role explaining such variability might also be awareness of the disease among GPs. Partnership work and shared training between rheumatologists and GPs proved very effective in raising this awareness and familiarity. For instance, in our experience, the median time from symptom onset until rheumatologic referral was 22 days in the group of trained GPs and 42 days in the group of untrained GPs [23].
I guess luck for those of us in Boston, The Mass Gen Brigham and Women's Hospital HAS a fast track GCA clinic.
@nyxygirl
If I am not mistaken....you also have Dr. John Stone! I believe he participated in the clinical trials for Actemra.
When I was finally diagnosed with GCA in 2019 and searching the Internet to see what it was....the only thing I found was a video of Dr. Stone telling GPs how to better diagnose GCA...scary.
I did everything I could to make videos about GCA available on YouTube for folks like...all of us. They are there now from the charity Health Unlocked in England.
Knowledge chips away at fear and also makes us more informed patients.💞