I know this sounds alarming, but are our doctors taking the implications for vascular effects and the need for cardiac follow-up seriously? I just had my annual with my internist. I was surprised at some slight EKG changes.
I am an RN who worked for years in CCU & telemetry. I was searching for the reason for these changes & GCA, when I came upon this article from a Rheumatology Journal Vol 57, Supplement 2, February 2018 Editor John H. Stone, Division of Rheumatology, Mayo Clinic, Rochester, MN, USA. And the above statement was made in the section entitled Introduction. It was hard to re-find the article once I printed it last week, as all I was initially finding was the Abstract and Sources.
While we are waiting for mainstream rheumatology to adopt more proactive measures in checking GCA patients for large vessel/cardio involvement, here are a few work-around approaches that I successfully used to get limited imaging of my large vessels and heart. When routine tests by my GP showed my cholesterol was increased (I was on steroids for 4 years at that point), I claimed that my serum cholesterol was not necessarily an indicator of the plaque levels in my arteries, and I asked for an imaging way to verify the status of my arteries. She said it might be expensive (I am in USA and covered by Medicare), I said she might be able to present it as a patient with a LVV who needed checking. She did that, and I received a CAT scan of my heart and aorta as well as an ultrasound of my carotid arteries all covered by Medicare. It revealed all was normal for my age, and plaque in the arteries was "very minimal". No statins for me! Another time, at a check-up with my rheumatologist about one year after I had gone into remission and weaned off steroids, I asked my rheumatologist for imaging because of the known risk of aneurysms. He only agreed to a chest x-ray for a starter and promised further imaging if anything looked suspicious. That x-ray showed everything appeared normal.
Interesting (and alarming). My doctors have been suspicious of GCA, but have most recently settled on a GPA diagnosis— though “atypical.” I’m not convinced, but am relying on the “experts.” Do you know if a person can test c-Anca positive and have GCA?
I had a case study written about me for JAMA basically saying if it presents like GCA and even though the blood tests are normal, ultrasound, ct scan and MRI are all normal, still treat for GCA. It wasn't until the biopsy that it was confirmed but by treating it right away, they saved the sight in my right eye.
Thanks - another 'aspect' about which many doctors seem poorly informed. To be fair I guess any research and 'conclusions' take time to infiltrate the medical community let alone become part of medical 'training'. Still I recently specifically referred to the concerns about large vessel involvement throughout the body with GCA and my GP didn't think it 'worth' me having any additional tests. Clearly these stats contradict such a 'dismissive' attitude.
Large Vessel Vasculitis is split into two groups... GCA and TAK (Takayasu)
With GCA being older predominately women and TAK being younger predominately women of Asian descent
These categories are now being reviewed with much more research as (we are the proof) that it is not that clear cut and there are many cross overs and sub groups that all fall under the LVV header.
Most doctors are already redefining Temporal Arteritis which doesn’t really fit into the LVV category.
Professor Mason at the Hammersmith in London is doing research into the groups and definitions and is also researching if there is anything that predispososes a person to LVV.
From a personal point of view this is great news as I was diagnosed with GCA (and treatment the same as for Temporal Arteritis) which was very swiftly changed to LVV after my Heart Attack. So yes I do think anyone diagnosed with GCA, TAK or LVV should have a Cardio Vascular Consultant looking at them as well as a Rheumatologist
I would include more investigation into PMR patients too given the percentage of "just PMR" patients who do actually show evidence of LVV when it is looked for.
Good point. I will mention this to Prof M X. It maybe something he would include At the moment his Guinea Pigs are mainly TAK. With of course the oddities like me 😀
The Mayo Clinic is also located in Scottsdale, Arizona and Jacksonville, FL. I was diagnosed and treated through the Mayo Clinic in FL. I once asked my rheumatologist there about the prevalence of PMR/GCA that they encounter at the FL clinic. He told me there were many more cases at the Minnesota clinic.
Because Olmsted County, Minnesota, is a region with many residents with a Scandinavian heritage - which is held to increase the likelihood of developing PMR and GCA. The highest incidences are in Norway and Sweden.
Per the referenced article GCA is divided into 2 groups: cranial GCA and LV-GCA [large-vessel GCA]. Diagnosis of LV-GCA can be confirmed by imaging tests listed in Table 1.
I was diagnosed with GCA with vision loss in Nov 2017 biopsy confirmed. Several weeks later I had an MRA of the chest: "REPORT: Caliber of the thoracic aorta is within normal limits. Visualized portions of the great vessels and their origins are also normal in caliber limited visualization the pulmonary vasculature is unremarkable." I will need periodic repeats of the MRA.
However my sister was diagnosed with GCA with vision loss [& PMR] in 2010, and in 2016 with a heart murmer from aortitis requiring open heart surgery. So she has both cranial and large-vessel GCA.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Interview with Sarah L. Mackie, MD on Tocilizumab, steroids and the future of GCA treatment.
Update on my GCA/Large vessel vasculitis journey: off pred and back to normal (with TCZ) 
On GCA end of spectrum?
Confused!
