Caution Misinformation

I am concerned that there is a large amount of misinformation online about Giant Cell Arteritis and even doctors are confused about exactly what this illness entails.

Giant Cell Arteritis causes inflammation of large and medium sized arteries of the body. If the temporal arteries are affected, this is specifically called 'temporal arteritis'. Inflammation of the temporal arteries can cause total blindness but if prednisone is administered, the loss of sight can be recoverable in some instances. If anti-inflammatory medication does not reduce the inflammation sufficiently, the arteries can be damaged, and the stroke, heart attack and dementia risk can be increased. There are some videos on youtube under the Vasculitis Foundation channel which have been produced by professionals and give some sound advice.

[John_Mills Volunteer]

On 18th April in London, Vasculitis UK are hosting a one-day vasculitis patient symposium. There will be many eminent international vasculitis speakers talking about topics of common interest to all vasculitis patients, but there will also be parallel sessions specifically on Small Vessel vasculitis (GPA.EGPA, HSP) and Large Vessel Vasculitis (GCA/TA, Takayasu's & other arteritis. Speaking at this latter session will be the international experts on LVV - Dr Maria Cinta Cid and Professor Justin Mason. The meeting will be interactive, allowing questions.

[Hidden in reply to John_Mills]

I do hope GPs attend this John. If possible some common misunderstandings about GCA should be highlighted along with best practise methods. There is huge confusion about what GCA is. Patients are needing to diagnose and prescribe for themselves! They are dismissed by GP’s as neurotic attention seekers or hypochondriacs when they should be referred to a vasculitis specialist. Unfortunately, patients who are knowledgeable about their illness often create defensive reactions from doctors who don't know much and can't find accurate information online either. I am appalled by the huge amount of confusion and misinformation that exists. Doctors are only concerned about inflammation of the temple artery because they are afraid of being sued when a patient loses their eye-sight. Inflammation of the arteries elsewhere in the body could be active and dangerous potential for damage to vital organs is just ignored. The consequences of poorly treated GCA could be an increased risk of stroke, heart attack, dementia, etc. , so preventative treatment is imperative to protect against these. Frequently, GCA is referred to as a complaint of ‘the elderly’ (50 is not elderly but middle age) as though it doesn't matter if someone is incapacitated for the next 30 years of their life. If people in care homes are neglected and not diagnosed with GCA, when they go blind, it is put down to a stroke. The whole area of temple artery biopsy is very controversial. Cutting through an inflamed temple artery is extremely radical diagnosis and one where the agenda is more for research purposes than for the wellbeing of the patient in their care. The whole thing is scandalous!

[John_Mills Volunteer in reply to Hidden]

I'm afraid GPs are a difficult group to reach. There are 80,000 of them and 6,000 rare diseases, of which GCA is one. Our event is principally for patients but professionals are welcome. The 4 day international medical conference which follows it usually has a session devoted to GCA related subjects - but this event is for professionals with a special interest in vasculitis, too focused for GPs.

Whilst GCA has been very neglected, a lot of attention has been turned towards GCA in very recent times. Non invasive ultrasound diagnostic instead of biopsy is steadily gaining ground. The NHS is developing a fast-track referral system to avoid unnecessary sight loss and there are two new drug trials for which participants are being sought. These are being carried out by the pharmaceutical companies Servier & Roche and details are on the Vuk website.

Temporal arteritis is the rather archaic term. It was first described in about 960 AD. It was the first type of vasculitis to be recognised. Amongst knowledgeable professionals it is referred to as GCA. It is typically, but certainly not always a disease of those 60+ - incidence increasing with age.

Vasculitis UK is dedicated to education of professionals as well as patients and we work with medical professionals to improve awareness, recognition, diagnosis and treatment of vasculitis.

[Hidden]

Please can you post here the press release and other details about the symposium. I will synidicate the information to my own contacts. If there are complimentary tickets available for magazines, such as GP and Pulse, please include this information. Thank you. You do brilliant work and your knowledge is invaluable.

[Hidden]

Small Vessel vasculitis (GPA.EGPA, HSP) and Large Vessel Vasculitis (GCA/TA, Takayasu's & other arteritis..

Translation please..

GPA?

EGPA?

HSP?

What's the difference between GCA and Takayasu?

Thanks,

[Hidden]

Thank you for pressing the 'recommended' button at the base of the post. This raises awareness for GCA when people are using search engines to look for information on this dangerous illness which often receives poor treatment.