GCA... It even happens to TV Executives!

Good to see people in the spotlight sharing their PMR/GCA stories.

dailymail.co.uk/home/you/ar...

[PMRpro Ambassador]

I was quite keen to read it, However I use an ad-blocker so the DM won't let me. So I made an exception and switched it off - now I still can't read it because the ads make it impossible, even after a couple of minutes the ads are still downloading and the page is jerking about all over the place.

I did manage to establish it mentioned Dorothy Byrne and described a "typical" set of GCA symptoms - and a very atypical response from a GP!!!!

[HeronNS in reply to PMRpro]

Copied off the page, published 4 Jan 2020:

Imagine being a healthy woman in your 50s when you are struck down by a mystery illness that means you can barely walk and need your daughter’s help to get dressed.

You go to your GP complaining of tiredness, pain and stiffness, then in a matter of days you find you are at risk of going blind from a condition called giant cell arteritis (GCA). This is what happened to TV executive Dorothy Byrne.

Relatively few people are aware of GCA, yet it is among the most common causes of sudden blindness, particularly in women over 50. It is also linked to another common inflammatory condition called polymyalgia rheumatica (PMR) which causes severe exhaustion, pain and stiffness.

For Dorothy, who almost lost her sight to GCA, the stiffness and pain came on so rapidly that within days she was unable to get out of bed. Soon her jaw felt painful and began to lock – a classic symptom of GCA.

Tragically, each year around 3,000 people lose some or all of their sight as a result of GCA. The blindness is due to inflammation in the lining of the artery walls in the head and neck, blocking the blood supply and damaging the optic nerve. Fortunately, by treating it early, blindness can be prevented.

However, given that one person in 20 with PMR goes on to get GCA affecting their eyes, we need better awareness to ensure that vision can be saved. One of the challenges is that the symptoms of GCA are not well known. So here’s what you should look out for...

An intensely painful headache on the side of the forehead that you have never experienced before.

Some blurred or double vision or episodes of blindness in one or both eyes.

Scalp pain and tenderness, particularly when brushing hair.

Jaw pain when chewing and swallowing may also be experienced.

If you develop these symptoms contact your doctor or 111 urgently.

Around 50 per cent of those with GCA suffer with symptoms of inflammation related to PMR, including aches in the limbs, back and shoulders as well as tiredness, weight loss, depression and a feeling of exhaustion and malaise.

Your doctor will arrange blood tests and immediately start a dose of oral steroids to reduce the inflammation, often alongside low-dose aspirin. The steroids are then reduced as symptoms improve over months or possibly years, though some patients do remain on long-term medication. Most people respond well to steroids, either coming off them or remaining on a lower dose. However, many either can’t tolerate them, relapse or don’t respond to treatment. The good news is that tocilizumab (TCZ), a new anti-inflammatory treatment, is showing positive results in this group.

To confirm the diagnosis of GCA an ultrasound and/or biopsy of the temporal artery will be arranged, along with a rheumatology appointment.

Going forward, monitoring is important, with urgent reviews if symptoms return. This means looking out for recurrence of the GCA red-flag symptoms or for PMR, as well as for side effects of the steroids, such as osteoporosis, weight gain, increased blood pressure, cataracts or glaucoma. Anyone on long-term steroids should have their eyes tested yearly, annual blood checks for diabetes and blood pressure and must not stop the steroids suddenly.

Dorothy – whose diagnosis was delayed – thankfully made a good recovery: she can now move and walk, and will not lose her eyesight.

If you are concerned, contact your GP or NHS 111. For more information, see pmrgca.co.uk.

[PMRpro Ambassador in reply to HeronNS]

Thank you!!!!!

[Blearyeyed in reply to PMRpro]

Wasn't this story in the Mail put up before , or am I imagining that ?

[PMRpro Ambassador in reply to Blearyeyed]

Different one I think. Must be a quiet week at the DM

[Hidden]

There are several links about Dorothy byrne... The story first circulated several years ago about pmr/gca.

dailymail.co.uk/health/arti...

The latest re pmr gca at the agm in 2019.

pmrgca.co.uk/content/agm2019

[PMRpro Ambassador in reply to Hidden]

And she is a member of the Board of PMRGCAuk (or was a few months ago).

[jinasc in reply to PMRpro]

Still is and now Deputy Chair

Dorothy Byrne - Publicity & Campaign

Dorothy is the Head of News and Current Affairs at Channel Four Television. She was previously a producer on World In Action, the editor of The Big Story on ITV and the editor of Dispatches. Her programmes have won numerous international Emmy, BAFTA and Royal Television Society awards. She was created a Fellow of The Royal Television Society for her “outstanding contribution to television”, received a Scottish BAFTA in 2015 for Outstanding Contribution to Television and has been awarded the Women in Film and Television Award for Factual Television. She is the chair of the international organisation the Ethical Journalism

Thought you might like to see it..........Dorothy was good to us.

[SheffieldJane]

Pretty accurate too, and the additional info from others that I didn’t know. Every little helps.

[Hidden]

Here’s Dorothy’s Article from 2010

dailymail.co.uk/health/arti...

[HeronNS in reply to Hidden]

Wow!

[MaryA_]

Thanks so much for posting that article. So many people in the medical field don’t see to know about it or when they do don’t seem to want to investigate it. Very frustrating. 😖😖. maryanne

[Grammy80 in reply to MaryA_]

So true....I'm in the states....and I've even had nurses whisper in my ear''What have you got? I've never heard of it", well, neither have some of the Docs. Not a big confidence builder....or one of my GP's pulled out her cell phone to look it up....yep, I left there....

[PMRpro Ambassador in reply to Grammy80]

I, on the other hand, prefer a non-specialist doctor or other healthcare professional to admit they don't know something and look it up.

[Highlandtiger]

Another article about her which was in the Guardian a few months ago.......

theguardian.com/media/2019/...

[PMRpro Ambassador in reply to Highlandtiger]

Yes - saw that one. A strong woman that!

[piglette in reply to Highlandtiger]

I thought the majority of the company were calling Boris a liar!

[piglette]

I think Dorothy got GCA about ten years ago. She is mentioned on the PMRGCAUK website.