Giant Cell Arteritis: Watch out for this nasty disease if you're female and over 40

Photo of woman in distress by Camila Quintero Franco. Thank you for making this extraordinary photo available on @unsplash

Women in their 40s or older need to be aware of a condition called giant cell arteritis or GCA. This article explains why. I'm not exaggerating when I say that knowing about GCA could save someone's sight, or even their life.

GCA is also known as temporal arteritis because, when you have it, "the arteries, particularly those at the side of the head (the temples), become inflamed." As NHS England states, GCA is "serious and needs urgent treatment."

What does GCA do? It causes multiple problems, including: "persistent, throbbing headaches, tenderness of the temples and scalp, jaw pain, fever, joint pain, and vision problems." That's according to the Vasculitis Foundation, which echoes the NHS when it warns: "Early treatment is vital to prevent serious complications such as blindness or stroke."

But wait, there's more: GCA often causes drenching night sweats, a symptom that can also be caused by menopause. And that's why women over 40 need to know about GCA. Sadly, far too many doctors tend to dismiss any symptoms suffered by women over 40 as "just menopause." And some doctors will say that to women in their 50s, 60s, and even 70s (for menopause neophytes, the menopause as the Brits refer to it, is over by 50 for most women).*

To be clear, most cases of GCA occur in people over 50, and the "peak group" is those between the ages of 60 and 80 years. That's according to PMRGCAuk, the leading GCA support organization in the UK.

It's not always menopause

Image by @Ageing_Better from their age-positive image libraryIf you know many women who are nearing or have turned 50, you may already know that this demographic often gets a particularly raw deal when it comes to healthcare. This is a result of two factors. First, there is a massively patriarchal bias throughout the medical world. Second, multiple diseases produce symptoms similar to those of menopause. 

I found this to be true, and truly problematic, when I started researching something called hereditary hemochromatosis about 15 years ago. This genetic condition can cause menopause-like symptoms in women who have gone through menopause; but many doctors have been taught—erroneously—that hemochromatosis is a young man's disease, even though older women can suffer and die from it. The result? Hemochromatosis in older women is often missed until it has caused them serious damage. (See the "hemopause" website for more details). 

When it comes to GCA, consider the main early symptoms, as described by PMRGCAuk: "headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite." You can well imagine a woman going to her doctor with those symptoms and being told one of the  following:

  • It's just menopause
  • It's just perimenopause
  • You're just post-menopausal
  • You're just rundown/overworked/stressed

What the doctor should do is ask the patient if they have any:

  • Pain over the temples
  • Double vision, loss of vision, or pain behind your eyes
  • Difficulty opening your mouth, or pain when eating
  • Scalp pain or tenderness

Those are four indicators which, when taken with the initial symptoms, suggest that the patient may have GCA. (Medicine Today) This suggestion needs to be taken very seriously, given that untreated GCA can cause blindness and stroke if not treated swiftly. Heavens knows how many women with those symptoms have been fobbed off with: "it's just the change."

Further GCA Information

How serious is GCA? This article written about 10 years ago for doctors in New Zealand is quite clear on how seriously GCA needs to be treated: "Giant cell arteritis, also referred to as temporal arteritis, is a form of vasculitis which predominantly affects older people. It must be treated urgently, as it is associated with a significant risk of permanent visual loss, stroke, aneurysm and possible death." (Best Practice Advocacy Centre New Zealand

Who diagnoses GCA? If you have a good GP (UK) or primary care doctor (US) they may recognize the early signs of GCA and refer you to a rheumatologist. If you are seeing an eye doctor because of pain in one or both eyes, or a sudden and significant reduction in vision, and they can't find a cause for these symptoms within your eyes, they may suspect GCA and refer you to a rheumatologist.

A more scientific description: "Giant cell arteritis (GCA), also called temporal arteritis, is an inflammatory autoimmune disease of large blood vessels. Symptoms may include headache, pain over the temples, flu-like symptoms, double vision, and difficulty opening the mouth. Complications can include blockage of the artery to the eye with resulting blindness, as well as aortic dissection, and aortic aneurysm. GCA is frequently associated with polymyalgia rheumatica. (Wikipedia)

Illustrated medical deep dive: Highly technical article, Giant Cell Arteritis: A Case-Based Narrative Review of the Literature

GCA is a form of vasculitis: "Vasculitis is a family of nearly 20 rare diseases characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues." Vasculitis Foundation

Who gets GCA and why? "GCA is the most common form of vasculitis in older adults, affecting people over 50 years of age, with an average onset of 74 years of age. Women are more than twice as likely to get GCA than men. The condition is mostly seen in people of Northern European ancestry and is rare in other ethnic groups such as Asians and African Americans. GCA prevalence is estimated at 278 per 100,000 people in the United States over the age of 50.

Beware of rare: The word rare can be tricky. For example, both GCA and hemochromatosis are said to be "rare in people who are not of Northern European ancestry." But people who self-identify as Asian and African American may still get GCA. Also, GCA is also said to be rare before 50, but there are younger people who have it. Remember this, just because textbooks say X is rare, doesn't mean you don't have it or shouldn't be tested for it.

Facebook support group:

UK support group:

More about symptoms: "The main early symptoms of GCA are headache, feeling generally unwell, weight loss, drenching night sweats and loss of appetite. Over time, the blood vessels on the side of the head can be visibly swollen with tenderness on touch.  Things like brushing your hair may become painful. In more advanced cases, people may find difficulty in chewing. Typically, it is chewy foods like a piece of chicken or a hard piece of toast that cause problems. The chewing becomes progressively painful rather than being painful from the first bite. If ignored, the condition can affect either part or whole of an individual’s eyesight. Very rarely, individuals may not notice any early symptoms and develop sudden painless loss of vision."

* I realize that the "timing" of menopause varies greatly, but I sometimes think that statements like "menopause can last into your sixties of seventies" arise from doctors attributing symptoms to protracted menopause rather than digging a bit deeper into the diagnostic toolkit. My partner first presented to her doctor with GCA-like symptoms when she was 45. She was finally diagnosed with GCA at 70.

Disclaimer: This page contains general information about medical conditions and treatments. This information is not medical advice, and should not be treated as such. I, Stephen Cobb, am solely responsible for the content of this website, and I am not a doctor. I'm just this bloke in love with a woman who has, like far too many women, suffered greatly, and in many cases needlessly, from the patriarchal, male-dominated, man-centered nature of medicine.

Please bear in. mind that you must not rely on the information on this page as an alternative to medical advice from your doctor or other professional healthcare provider. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this page.

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