I was left with crippling pain after the flu, then ended up dependent on steroids that had awful side-effects. But now I have hope at last By Jo Waters For The Daily Mail Published: 11:54 BST, 20 August 2024 | Updated: 11:54 BST, 20 August 2024 e-mail View comments Struggling to cope with chronic pain and waking up to six times a night, Annie Icke wondered if there was a better treatment for her symptoms than the steroids she’d been prescribed by her GP for eight years. She has polymyalgia rheumatica (PMR), an inflammatory auto-immune disease that mainly affects muscles and joints in the shoulders, hips, neck and wrists, causing painful stiffness.
PMR affects an estimated 200,000 people aged over 50. Although a family history of the condition raises your risk, it can be triggered by infections including some strains of flu and pneumonia . Annie developed it following a bout of flu, affecting her neck, hips, shoulders and wrists.
‘It was like I had seized up,’ recalls the 78-year-old retired PA who lives with her husband Paul, 68, a retired IT consultant, in Gloucestershire. Annie Icke has polymyalgia rheumatica (PMR), an inflammatory auto-immune disease Although the steroid medication helped, their well-documented side-effects took their toll. ‘For me, they included anxiety and weepiness, lost muscle tone and damage to tendons in my shoulder, gut problems [diarrhoea and constipation], insomnia [due to the side-effects] and terrible dreams,’ says Annie.
‘And yet every time I tried to come off them – I tried at least twice – my symptoms flared up, causing excruciating pain. So I was trapped.’ But the good news is that there is a new, more effective option than steroids for patients such as Annie: a once-a-fortnight treatment that appears to offer better pain relief and reduces the number of flare-ups.
The drug sarilumab (brand name Kevzara) is already licensed for rheumatoid arthritis, where it works by blocking the effects of an inflammatory protein called interleukin-6. Now new UK trial data suggests it could reduce the number of relapses in patients with PMR. Furthermore, it could mean PMR patients are able to wean themselves off steroids without the major withdrawal symptoms many experience.
PMR is also one of the most common reasons why people are prescribed long-term steroid pills, accounting for more than one in five (22 per cent) of all steroid prescriptions, according to the National Institute for Health and Care Excellence (NICE). Read More I finally got my life back after years of chronic pain..
. but it wasn't thanks to a miracle pill The symptoms can be dramatic and crippling, says Bhaskar Dasgupta, a professor of rheumatology at Southend University Hospital. ‘It’s not any old pain – it usually starts suddenly and causes severe pain in both shoulders and upper arms and is so debilitating you can’t turn over or get out of bed, get dressed, or reach for anything or even sit on the loo,’ he says.
‘Two thirds of PMR patients will also get pain in their buttocks and thighs.’ While steroids, such as prednisolone tablets, ease symptoms, they can also lead to weight gain and a ‘moon face’ – although Annie managed to avoid this. Most PMR patients have to take steroids for around 18 months as controlling the underlying inflammation is a lengthy process.
NICE guidelines state that most patients will then need a further two years to taper off the 15mg a day standard dose (Annie was on a higher daily dose, 20mg) but one in four is still on them after four years. Potential long-term side-effects of steroid medication include: increased risk of infections, skin thinning, bone fractures, high blood pressure and cataracts and glaucoma. Around half of patients suffer a relapse when they try to taper their dose, says Professor Dasgupta.
‘PMR is a poorly managed and neglected condition,’ he says. ‘And prednisolone is unsatisfactory for patients with relapsing symptoms and can have long-term side-effects. Patients can have relapses while tapering their dose, and these relapses currently have few treatment options.
’ One such option is methotrexate, a chemotherapy drug that dampens down the overactive immune system; or leflunomide, a daily tablet with a similar effect. But recent research led by Professor Dasgupta, published in the New England Journal of Medicine, suggests sarilumab may provide an alternative. In the year-long trial, 118 patients who were all taking steroids received either injections of sarilumab twice a month plus steroids, or just steroids.
Both groups had their existing steroid doses gradually reduced, over 14 weeks for the sarilumab group and 12 months for the steroid group – as they did not have the benefit of a second drug. The drug sarilumab could reduce the number of relapses in patients with PMR At the end of the trial, 28 per cent of the sarilumab group had sustained remission of their pain and stiffness, compared with 10 per cent of those on steroids. And while 57 per cent of steroid patients suffered a relapse within a few months, only 24 per cent of the sarilumab group did.
Professor Dasgupta says: ‘This is an exciting development that has potential to improve treatment options for patients with relapsing PMR who are trying to come off steroid medication.’ Although sarilumab also has side-effects – including a lower white blood cell count, joint pain, diarrhoea and infections – Professor Dasgupta says these are less debilitating than the side-effects associated with steroids. Sarilumab is not currently licensed to treat PMR in the UK but could be considered for NICE approval next year.
Annie’s symptoms came out of the blue, disrupting her sleep and leaving her exhausted. ‘Paul had to massage my knees and legs in the morning so I could get out of bed,’ she recalls. ‘I couldn’t manage the stairs without him or get dressed unaided.
Only weeks earlier I’d been leading a busy, active life; gardening, decorating, walking, and taking lovely holidays.’ At first, Annie blamed it on the lingering effects of a recent bad bout of flu. But when her symptoms worsened, she saw her GP.
Blood tests showed she had raised inflammatory markers which, along with the history of her symptoms, led to the diagnosis of PMR. She was prescribed steroids. ‘They worked for the pain but also made me anxious and emotional,’ says Annie.
‘I must have driven Paul mad with my crying. ‘He had to retire early and become my carer, as there was so much I couldn’t do for myself. ‘I also developed cataracts, which can be linked to steroids; began to bruise easily as my skin had thinned so much; and had really bad sleep problems.
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Advertisement Annie was referred to multiple specialists and given numerous drug treatments over the years. ‘Methotrexate made my hair fall out in clumps, so I stopped that,’ she recalls. ‘And later I was tried on azathioprine, which also reduces inflammation, but developed liver function problems.
’ Eventually, in 2016, Annie read about research on new treatments being carried out by Professor Dasgupta and booked a private appointment. He diagnosed her with a related condition, alongside her PMR, called giant cell arteritis (GCA) ‘which I didn’t know about’, she says. GCA causes inflammation of blood vessels, including the aorta, the largest blood vessel in the body which carries blood away from the heart.
It affects up to 30 per cent of people with PMR. L eft untreated, GCA can cause stroke and blindness as the arteries become swollen and damaged, restricting blood flow to the brain and eyes. ‘It was a lot to take on board,’ says Annie.
‘But Professor Dasgupta explained there were other effective drugs I could try, which was a relief.’ In 2016, she joined a trial for a drug called sirukumab (which works in a similar way to sarilumab). Her symptoms improved but the trial was stopped after the US medicine regulator raised safety concerns over the higher number of deaths compared with a placebo group.
Undaunted, in 2019, Annie started on tocilizumab, an immunosuppressant drug that works in a similar way, which she self-injects every ten days: she’s recently also been prescribed another immunosuppressant, leflunomide, as a daily tablet. Her dose of steroid medication has now dropped to 4mg a day and her symptoms have greatly improved. Annie says: ‘Now I’m back to gardening, walking and decorating.
I want other people to know you aren’t stuck with steroids: newer treatments are available for PMR that can really improve your quality of life.’ pmrgca.org.
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