Whenever Carol Howell goes for a bike ride along the seafront with her husband Mark, or for a brisk walk with her mum Audrey, she has to pinch herself to remember how far she has come.
Because eight years ago, life changed overnight for Carol, who’s now 68.
Some days she struggled to get out of bed; other times she couldn’t get out of a chair.
And as if that wasn’t bad enough, she was also at risk of losing her eyesight.
‘I’d been very fit, doing a half-a-mile swim or a ballet session before or after work,’ says Carol, a retired dental surgeon.
‘But that all changed one morning in the summer of 2011, when I woke up feeling as if I had the flu.
'I was so achey and stiff, I couldn’t even get out of bed.’
When she was no better after a week, Carol, from Bournemouth, Dorset, paid a visit to her GP, Dr Stephen Kidman, who thought she might have polymyalgia rheumatica (PMR).
‘I’d heard of it because a relative had it.
'The treatment was steroids, and he started me off on 5mg a day,’ says Carol.
Carol found the stiffness with PMR was worse in the mornings and it wore off as the day went on.
'But about 10 days later, she woke one morning with a blinding headache.
‘I couldn’t even move my jaw to eat my breakfast muesli,’ she recalls.
‘Opening my mouth was agony.
'This time Dr Kidman gave me a diagnosis of giant cell arteritis (GCA), a form of vasculitis (inflammation of the blood vessels) which is linked to PMR.
‘It won’t kill you, but you’re not going to like the treatment because you’ll put on weight,’ Dr Kidman told me.
‘You have to take it because if you don’t, you risk losing your sight.
'They say as a GP, you will diagnose this once in your lifetime, and this is my once.’
After a series of tests, including a colonoscopy, an endoscopy, an echocardiogram and a brain scan at Bournemouth University Hospital, Carol was reassured there was nothing else wrong with her.
But an artery biopsy taken from the right side of her face, just in front of her ear, had confirmed she had GCA.
The vascular surgeon showed her a healthy vessel, which was like a little thread, to compare with her vessel.
‘Mine was abnormal, swollen like a piece of jelly baby,’ she says sadly.
‘I was devastated at the thought I might go blind and have to give up my two big loves – patchwork and sewing.
'If I lost my sight, all I could do was sing.’
Carol battled through the pain to stay at work for another year, and her dose of steroids was increased to 80mg a day.
‘I’d never been a person who got headaches , but those GCA headaches felt as if somebody was sticking knives into my head,’ says Carol.
‘My scalp was so sensitive I couldn’t touch it.
'Even combing my hair was agony.’
So when she had the chance, Carol decided to retire early.
Around the same time, her leg buckled in the middle of a ballet class so she had to give that up too.
‘My old life was fading away,’ remembers Carol. ‘It felt like old age and illness were beckoning.’
Because steroids have side effects, like diabetes and osteoporosis, doctors tried to reduce Carol’s dosage and she started taking other drugs, even chemotherapy ones.
But none of them made a difference to her PMR/GCA, instead they gave her diarrhoea, liver inflammation and a stomach ulcer.
The only thing that eased her joint stiffness and temple soreness was the steroids, which she started having as an injection every month.
But a scan showed they’d already taken their toll on her body – Carol now had osteoporosis in her spine.
Worried for his wife, her husband Mark, a retired lawyer, started researching treatment for PMR/GCA and he came across Professor Bhaskar Dasgupta, a consultant rheumatologist at Southend University Hospital in Essex.
When Carol had an appointment with Prof Dasgupta in 2013, he told her she needed a drug called tocilizumab, which had been used to treat arthritis.
But he explained tocilizumab wasn’t yet licensed to treat PMR and GCA, and it might be hard to get.
‘How right he was,’ says Carol.
‘Our application for the drug was turned down because it was expensive and there was no proof it would work.
‘I felt as if I was back to square one.
‘I then saw a new consultant, and after explaining how I felt I’d gone full circle, he commented that at least I hadn’t had a stroke or gone blind!’
For Mark, now 71, the glib comment about his wife’s suffering was the final straw.
Fuming, he told Carol, ‘We’re going back to see Professor Dasgupta to ask if there are any trials you could take part in.’
Carol continues: ‘It’s funny how things happen. Within seconds of sitting down with Prof Dasgupta in January 2015, he asked if I’d be interested in taking part in a trial to test tocilizumab.
'He warned me not to raise my hopes, adding there were a lot of criteria which I might not fulfil.’
While many people see drug trials as a gamble, Carol drew on her medical background and saw it as a positive step.
‘I was willing to give anything a try.
'I have faith in trials.
'Besides, Mark would have gone to the ends of the earth to ease my pain,’ she says.
Starting the trial
Luckily, Carol was accepted onto the trial.
She started in February 2015 and did the 400-mile trip from Bournemouth to Southend every month.
It was a double blind trial so Carol didn’t know if she was in the group taking tocilizumab or a placebo medication.
At the same time, her steroids were reduced.
Within weeks of starting the trial, Carol suspected she was on the placebo because her PMR stiffness started to come back.
Luckily, the GCA headaches stayed away.
‘It was frustrating, especially considering we were doing such a long journey to get the tablets,’ she says.
‘But Prof Dasgupta had promised I would get the tocilizumab at the end of the year if I didn’t get it in the trial.
'That was my prize, so I kept going.
‘By now everything was an effort.
'I love gardening, but my pain meant I could only manage 10 minutes in the garden.
'I’d have a cup of tea with my best friend Millie and struggle to get up out of her chair.
'I still walked my two miniature Dachshunds, Coco and Mopsy, but it was hard work.’
By February 2016, when Carol had been on the placebo a year, she was finally given the tocilizumab.
‘It was like getting treasure and I couldn’t wait to start,’ she laughs.
She started on a dose of 160mg which was injected into the fleshy part of her abdomen once a week.
After being monitored for the first few weeks to check for adverse reactions, she was then taught to inject the drug herself.
The effects were soon obvious.
She says, ‘Within five weeks, I looked 10 years younger and I had such amazing energy again.
'My stiffness and aches vanished.
'Sometimes, you don’t realise how horrible you felt until you’re feeling better.
'I went back to swimming, I did a yoga class three times a week and I signed up to do ballroom dancing.
'Mark joked that I was wearing him out!’
Carol took tocilizumab for a year until January 2017, without any symptoms or side effects, as part of the study.
Later that year, the drug was licensed for use with some PMR/GCA patients.
But since the trial she has managed on low doses of steroids – and at the moment she’s on 3mg per day.
About a year ago, Carol and Mark bought some bicycles and they now do a five-mile ride every day.
She also still walks with her 89-year-old mum, and she and Mark have won medals for their ballroom dancing.
‘I’ve no regrets about taking part in a drugs trial,’ she concludes.
‘I didn’t feel like a guinea pig.
'I was treated like a private patient.
'If I hadn’t taken part, my life would have carried on at a rather painful rate.
‘I’ve since met other sufferers who have lost sight in one eye or their faces are blown-up by steroids.
'That could easily have been me.
'But thankfully, I was given a new lease of life.
‘I was one of the lucky ones.
'I just wish it could be the same for everyone.’
• Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA) are linked rheumatic conditions, which can strike separately, but often together.
• PMR causes pain, tenderness and stiffness in the large muscles around the shoulders, hips and neck, while GCA is an inflammation of the arteries in the head and neck and other large arteries. Untreated it can lead to blindness.
• Symptoms include sudden headaches, scalp tenderness, pain in the tongue or jaw when chewing/talking and problems with vision.
• PMR and GCA tend to affect those over 60, and there are thought to be 250,000 people with the conditions.
• The trial of tocilizumab found more than half the patients were able to come off steroids after six months. Professor Bhaskar Dasgupta, who specialises in PMR/GCA, says tocilizumab is now licensed and approved for the treatment of relapsing/refractory GCA for one year.
Visit the patient support group at Pmrgca.co.uk or call the helpline on 0300 111 5090.
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