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.
The breakfast pot that gets my vote
It can be hard to find a decent portable and quick breakfast. Porridge is a suitable, filling option but so many instant porridge pots contain surprising amounts of sugar. So I am thrilled to have found one that has no added sugar, is high in fibre and is relatively unprocessed. Simplyseedz is made up of porridge oats and fruit and seeds, which makes for a healthy and easy start to the day. I like mine with hot milk, or I add the milk the night before and leave it in the fridge to make overnight oats.
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