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: https://www.facebook.com/groups/giantcellarteritissupportgroup/

UK support group: https://pmrgca.org.uk/

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." https://pmrgca.org.uk/

* 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.

Time to revisit high blood pressure and primary aldosteronism

If you or someone you love is taking tablets for high blood pressure, now would be a good time to learn more about primary aldosteronism, a condition that has recently been declared: "the most common specifically treatable and potentially curable form of hypertension" (BMJ, 2021). 

Indeed, if you were to ask your doctor about primary aldosteronism tomorrow, you might be told that it's rare, but that is not true. Recent advances in medical science have confirmed that PA is the most common cause of high blood pressure. If you are academically-inclined, here is one of the landmark studies of PA prevalence: The Unrecognized Prevalence of Primary Aldosteronism: A Cross-sectional Study.

Primary aldosteronism—also known as Conn's syndrome, not Cobb's syndrome—is a condition in which your adrenal glands produce too much aldosterone and this causes your body to retain sodium and lose potassium. Here are some clues that you might have PA:
  • your blood pressure is high despite taking BP medication
  • your sodium level is on the high side despite cutting back on salt in your diet
  • your potassium level is on the low side despite taking prescription potassium supplements and eating lots of bananas
As I learned from my experience as a heart patient, untreated primary aldosteronism leads to elevated blood pressure and can increase your risk of stroke, heart disease, and atrial fibrillation. I spent several decades being treated for high blood pressure by doctors who kept telling me to eat more bananas and less salt, even as excess aldosterone was damaging my heart. (Hint: you will never eat enough bananas to defeat PA.)

These days, there is a whole lot of information on this widely undiagnosed condition at the Primary Aldosteronism Foundation website.You can read about my experience with PA, which eventually led to my high blood pressure being cured through adrenal gland surgery, on my Primary Aldosteronism page, and in my previous blog posts about my adrenalectomy:

Prostate biopsy result: a tiny amount of non-aggressive cancer, now under Active Surveillance

Scientist using a microscope, with thanks to the National Cancer Institute for making this photo available freely on Unsplash
"A tiny amount of non-aggressive cancer" is probably the best biopsy result you can get, short of "no sign of any cancer at all." 

And that is why I was so happy to hear those words last week when a urologist gave me the results of the prostate biopsy that I described in some detail here

He delivered this wonderful news as I sat in his office, along with a specialist nurse and an audio recording system. I will come back to the audio recording system in a moment; the make purpose of this blog post is to make the point that not every prostate biopsy brings very bad news. 

Even if you are at elevated risk of prostate cancer—based on family history and/or PSA score—that doesn't mean you're predestined to have a serious case of it. Many men live with a low level of prostate cancer that never produces serious symptoms. So, when a urologist says you should have a prostate biopsy, you probably should, even though a biopsy can be an unpleasant experience. 

(To be honest, the urologist had to talk me into getting the biopsy. I was arguing that "just an MRI" would be enough, and they did do an MRI before the biopsy; but that was mainly to get the lay of the and look for signs that the prostate cancer, if there was any, had spread beyond the prostate itself—in my case, it had not.)

Obviously, what happens after the biopsy will depend on how much cancer is found. If there is no sign of cancer? Great! If there is some cancer? You and your doctors have a sound basis for determining the best course of action. 

Transperineal prostate biopsy: a patient's perspective

Man saying "You want to stick needles where?" Thanks to krakenimages for making the photo in this image available freely on @unsplash.

If you happen to be wondering what a prostate biopsy is like, this article should prove helpful. 

In August, I underwent something called a transperineal prostate biopsy and I thought sharing my experience might be helpful to other people who are facing this procedure. 

(Update, November 27, 2021: My prostate biopsy results.) 

Like most prostate biopsies, mine was performed to evaluate whether or not the patient has prostate cancer. That means biopsies can be an emotionally challenging experience as well as a physically daunting prospect: a scary procedure at a scary time. 

NCI's Dictionary of Cancer Terms

However, while I find the thought of needles piercing sensitive parts of my body unappealing, I found that this procedure can be relatively quick and painless. I say that based on my experience and the feedback of several other guys whom I chatted with over tea and biscuits in the recovery room. This should be positive news, given that a biopsy is an essential weapon in the fight to find and treat prostate cancer. 

Big fun with old UK maps? The National Library of Scotland delivers

This is just a quick blog post to share some fun I've been having lately by combining old maps of England with current satellite photography. To be clear, I'm not the one doing the combining; that work is being done by the National Library on an amazing website that yields views like this:

What you are looking at is a map that shows the River Sherbourne in Coventry in the late 1800s, drawn over current satellite photos of the same slice of England's green and pleasant land. You can go to this interactive map view by clicking here

And that's the fun I've been having, because when I was young I played on that land and explored it with my friends. We were all born on the streets you see at the top of the image. (This was in the 1950s so our parents always worried that we would either drown in the river or catch polio from the river, neither of which happened, mainly thanks to common sense, good fortune, and a great vaccine.)

In the two images below I have rotated the view slightly and marked where I was born on both of them. In other words, the house in which I was born sits in what was a field until these streets were constructed (1934-36). 

What you can also see is that the course of the river has changed over time. This is part of the long and complicated story of the River Sherbourne, one that I am exploring these days on foot and, thanks to the National Library of Scotland, online.  

I have already determined that the river was straightened out after the time I spent playing there in the 1950s and early 1960s. Time permitting, I will post photos of what is today called Lake View Park, even though there is no lake (another long story).


Cannabis-based medicine: a personal (UK) perspective

On July 17, 2021, something very wonderful and special arrived at our address in England: cannabis-based medicine prescribed by an English doctor. 

I published an article about what this delivery meant to us, over on Medium: Prescription cannabis and quality of life: a case study from the UK

Based on Medium's statistics, this could be the most widely-read article that I have written since I retired in 2019. Here's a quote:

"after four days of taking the capsules my wife was better in nine out of 14 ways, meaning there were improvements in, or reduction of, nine of the 14 symptoms...after seven days of cannabis-based medication, Chey is now enjoying improvement in 13 out of 14 areas."

What's so special about this UK cannabis? 

Friends and family will know that our household is no stranger to medical cannabis; Chey began exploring its potential to ease her pain and suffering even before we moved to California in 2011 and she received her medical marijuana card.

After considerable trial and error with different cannabis formulations—some of which she made herself—Chey found what worked for her: capsules containing a mix of the two main cannabis compounds, THC and CBD.

And when I say "worked for her," I mean: did such a great job of addressing her chronic musko-skeletal pain that she went from taking 140mg of morphine a day to zero, nought, none. She used cannabis to end years of heavy opioid use. Cannabis also put an end to years of nasty and unpleasant opioid side effects, not to mention recurrent medical harassment by doctors who accused her of being a drug addict.

When we decided to move from California to England in 2019 to be near my mum, who is now in her nineties, we knew that the Conservative government had changed the legal status of cannabis medications in 2018 to make them more accessible. What we didn't know until we got here is that the government's actions were in reality far less helpful than they sounded (a hallmark of Britain's Conservative governments for the last decade or so).

Three years on, this is still the case, with only a handful of Brits actually getting cannabis prescribed by the National Health Service. The result is that an estimated 1.4 million people in the UK are still using cannabis illegally for medical reasons. 

At the same time, a few thousand people in the UK have managed to navigate "the private option" in which you pay a special doctor at a special clinic to examine your case and legally write you a prescription. (I have described the process in this Medium article: Getting prescription cannabis meds in the UK legally: a beginner’s guide.)

When Chey's supply of California-sourced cannabis meds ran out, and her health got worse and worse, we decided to try the UK's pricey private option. This required many phone calls and emails, took many stressful weeks, and of course involved paying consultation fees and product costs. Not ideal for someone who is suffering multiple symptoms that are seriously eroding their quality of life.

Eventually, and very thankfully, we achieved the transformative delivery that happened in July. Since then Chey has been able to get her dose adjusted and her prescription renewed. Yet this is bad news as well as good news; it's good news for Chey, but bad news for millions of Brits who cannot afford to get cannabis through this process. This is clearly wrong.

Frankly, I fail to see how the UK's convoluted and deeply unethical three-tier approach to cannabis medication can continue in the face of mounting protests and outrage. Most Brits are repulsed by the current a situation in which "the rich get high quality cannabis meds, the poor do not, unless they take their chances breaking their law."

Fortunately, there are plenty of groups working to change this. I have included some here, along with some relevant articles:
Clearly, the absurdity of the current status of cannabis-based medicine in the UK is well understood in some circles. What is needed now is to spread that understanding and ensure that it reaches all corners of power and governance in the country. An enlightened approach to cannabis, led from the top, would enable huge improvements in quality of life for millions of people as well as generate jobs and wealth. Consider the manifold benefits of a blended model in which:

a. recreational use of cannabis becomes a revenue stream for UK companies (growers processors, dispensaries), employees of those companies, and of course the UK treasury, much akin to the alcoholic beverage industry today, and

b. the national health system provides affordable medicinal cannabis prescriptions to people in the UK who need them and thereby: reduces use of addictive opioids, treats conditions such as depression, anxiety, ME/CFS and Long Covid; potentially eliminates some conditions, such as childhood epilepsy; and generally improves quality of life for millions. 

There are no legitimate barriers to the UK adopting this model and becoming a world leader in responsible cannabis production, research, and medicine. I would certainly vote for this, and I have no interest in consuming cannabis myself. 

[Disclaimer: future changes to my health may create a personal interest in taking cannabis for medical purposes, but in the past I tried recreational use of cannabis and did not enjoy it.]

Finally...

If you are writing about cannabis-based medicines, I have a request and a free offer. The request is that you use the more accurate terms "cannabis-based medicine" or "medicinal cannabis," and avoid using "medical marijuana." The latter is now widely considered to be inaccurate, confusing, and potentially inflammatory or prejudicial.

The free offer is a high resolution version of the public domain image below, created by me for anyone who is illustrating articles, brochures, blog posts, etc. about cannabis-based medicine. This image makes a welcome change from overused and grossly misleading graphics using smoke-shrouded foliage. Free to download from UnSplash using this URL: https://unsplash.com/photos/qzD_H7-Jcj4.


Missing links and images

Like their creators, websites age over time, and sometimes they forget things, like where a particular image or document is located. This page is an attempt to provided some of the things that have gone missing on the various Cobb websites, starting with a link to my master's dissertation:.

*Getting to know CISOs: Challenging assumptions about closing the cybersecurity skills gap, a Security and Risk Management master's degree dissertation (pdf).

*The Rock Throwing GIF: I made this to make a point and you are free to use it as well.

With many thanks to readers who have taken the time to use my Contact page to let me know of missing links and pages.

Classic Glass Photography: pursuing a hobby during lockdown

I'm into classic glass photography. That's using lenses from old 35mm film cameras to take pictures with modern digital cameras (for example, the Minolta lens on my Olympus camera shown here). 

I will write more about my hobby here on this blog. Here are some articles on classic glass:

BTW, if you have old 35mm SLR camera lenses around you might want to use them like this, or sell them on eBay. I get the impression that some old lenses are now fetching decent prices if they are in good condition.
 
(Just FYI, this blog post is being used as a test. I want to see if the image of my camera—shown above—appears automatically when I tweet the page.)

Can you tell us a bit about how you grew up? The power of your story, in a time of change

This month I took part in a slightly unusual interview. The interviewer was from a publication called Authority and the interview was carried out entirely via email, but that's not the unusual bit. The title of this interview was: 5 Things You Need To Know To Optimize Your Company’s Approach to Data Privacy and Cybersecurity. Again, nothing unusual there—I have spent several decades studying how companies approach data privacy and cybersecurity. But consider the very first question of the interview: Can you tell us a bit about how you grew up?

Six year-old me, with my father,
an engineer, in Canada, 1959

That may not be an unusual question if you were being profiled by a lifestyle magazine, but as a prelude to professional opinions on cybersecurity? To me, that was unusual.

However, as I thought about my response—words that would truthfully answer the question while remaining relevant to the context—I not only enjoyed the process, I realized that this was a question I'd been discussing with myself for decades. 

Furthermore, across those decades, the answer has changed, many times. Indeed, the answer to "how I grew up" was often a story of both origins and change, a way to make sense of how my life started out and then turned out. And of course I have told that story many times, in job applications and interviews, at business dinners and networking events, and on the Internet via websites and social media profiles. 

I don't know how you feel about making sense of your life, but I have found that having a coherent personal narrative of my life has helped me to cope with some of the tough times that I've had to live through, mercifully few though those have been. (I am well aware that I have enjoyed exceptional good fortune in life and, as a white male, a massive amount of privilege; however, I have had to face grief and loss, prejudice and enmity, and I know from personal experience what it is like to be unemployed and homeless.) 

Your story of change

Speaking of tougher times, 2020 seems to be determined to bring more of these to more people in more places than any other year since the 1940s. During the ongoing Covid-19 upheaval I have found myself advising several people whose lives and careers are now—for a variety of reasons—in a period of involuntary transition.

However, because I am not a professional career counsellor or life coach, I felt obliged to bolster my own advice with that of experts. Fortunately, I found this very relevant perspective:

When you’re in the midst of a major career change, telling stories about your professional self can inspire others’ belief in your character and in your capacity to take a leap and land on your feet. 

This appears in an article titled What’s Your Story? by Herminia Ibarra and Kent Lineback that was originally published in the Harvard Business Review magazine. While the article was written over 15 years ago, it remains 100% relevant to 2020. Both authors are considered experts in their field with books to prove it. 

According to Lineback's profile on Amazon: "he helps companies and executives tell their stories, so others can learn from their experiences." Ibarra is an organisational behaviour professor at London Business School and offers lots of organizational and personal development resources on her website; she is also active on Twitter as @HerminiaIbarra

The authors begin their discussion of "Why You Need a Story" with this observation:

"All of us tell stories about ourselves. Stories define us. To know someone well is to know her story..."

However, and to the point of this blog post, they continue: 

"Seldom is a good story so needed, though, as when a major change of professional direction is under way...In a time of such unsettling transition, telling a compelling story to coworkers, bosses, friends, or family—or strangers in a conference room—inspires belief in our motives, character, and capacity to reach the goals we’ve set."

If you are dealing with an unsettling transition right now, I strongly urge you to read What's Your Story. And if you are hesitant about the idea of "telling stories," the authors make it clear that: 

"In urging the use of effective narrative, we’re not opening the door to tall tales. By "story" we don’t mean "something made up to make a bad situation look good." We’re talking about accounts that are deeply true and so engaging that listeners feel they have a stake in our success."

Personally, I have been very fortunate to have a lot of time to think about my life this year, and I now see that in the past my career benefited greatly from discussing—with myself and others—factual accounts of my life that are both "deeply true" and "engaging." 

In a 2018 TEDx talk, Ibarra refers to her work as teaching and researching people who come to those points in life that she calls: "what got you here won't get you there moments." I think most of us have experienced moments like that, even before 2020. I hope her article, and the other resources that I have pointed to in this blog post, prove helpful to you in getting through such moments now and in the future.

My story of change

Allow me to close with my version of "a bit about how you grew up" that appeared in Authority, the online publication which uses this tag line: Top Lessons. Top Authorities. Authority is published on the Medium platform, which I have used a few times myself—like this story about lack of trust in tech companies—but Authority uses Medium at scale. I think at least a dozen other people were interviewed with the same set of questions. You can read the full interview here, but the following is the bit about how I grew up:

I have spent much of my adult life in the US but was born and raised in Coventry, England, a city synonymous with innovations in industrial technology, like the pedal chain bicycle and the turbojet engine, and manufacturers like Jaguar, Land Rover, and Triumph. My father was an engineer, as were my grandfathers. As a teenager in the 60s I aspired to be a celebrated poet and songwriter, but the oil crisis of 1973 crushed funding for the arts and I pivoted into petroleum accounting, tax auditing, and from there to computing; that’s how I became enthralled by the clash of technology and ethics that is at the heart of cybersecurity.

I hope that gives you a sense of who I am, how I got to be who I am, and some of the changes I went through to make a career of studying how humans create and confront technology risks.

Just time for a quick update


You may recognize the phrase "Just time for a quick update" from John Oliver's show "Last Week Tonight With John Oliver." Like me, John is a dual national (UK/US) who was born in the UK, in the part that is called The Midlands.

John was born in the city of Birmingham. I was born in the city of Coventry. These two cities are close together but have remained separated by about seven miles of protected green space thanks to some sensible planning here in the Midlands. (Note, it is not called the Midlands because it is in the middle of the UK, it's not, it's in the middle of England, which is one of the four "regions" that make up the United Kingdom—it's complicated.)

A year ago today, I arrived here in the Midlands from America, with my partner, Chey, to explore a possible future in which we could be closer to my mum—who turned 90 in 2019—and my brother and his wife. Mum was born and raised and still lives in the Midlands. My brother and his wife now live in Spain. 

Less than six months into this experiment, the parameters changed: Coronavirus created a whole new set of variables, including restrictions on our ability to go to Spain or back to America or pretty much anywhere. 

Obviously, no "quick update" can capture the many and varied implications of all this, but fortunately I can point you to some of the things I have been doing during this time, namely research and writing on malware, cybercrime, cybersecurity, and a worrying lack of trust in tech firms

I will try to share some of the details of our ongoing experiment as time permits, mainly in the hope of helping others who may been dealing with some of the same challenges we have faced, but also some of the joys we have encountered, like the view at the top of this post. That's what the way to my mum's house looks like on a sunny day in late summer, early autumn.