I suffered from crippling pain after the flu, then became dependent on steroids with horrible side effects, but now I finally have hope

Annie Icke suffered from chronic pain and woke up to six times a night. She wondered if there was a better treatment for her symptoms than the steroids her GP had been prescribing for eight years.

She has polymyalgia rheumatica (PMR), an inflammatory disease that primarily affects the muscles and joints in the shoulders, hips, neck and wrists, causing painful stiffness.

PMR affects an estimated 200,000 people over the age of 50. While a family history of the condition increases your risk, it can be triggered by infections, including some strains of the flu and pneumonia.

Annie developed it after a bout of flu, which affected her neck, hips, shoulders and wrists. ‘It was like I had come to a standstill,’ 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 autoimmune inflammatory disease

Although the steroid medication helped, the well-documented side effects took their toll.

‘For me it was anxiety and tearfulness, loss of muscle tone and damage to the tendons in my shoulder, intestinal problems [diarrhoea and constipation]insomnia [due to the side-effects] and terrible dreams,’ says Annie.

“And yet, every time I tried to quit—I tried at least twice—my symptoms flared up, causing excruciating pain. So I was stuck.”

But the good news is that there is a new, more effective option than steroids for patients like Annie: a once-every-two-week treatment that appears to provide better pain relief and reduce the number of flare-ups.

The drug sarilumab (brand name Kevzara) is already approved for the treatment of rheumatoid arthritis. It works by blocking the effects of a pro-inflammatory protein called interleukin-6.

New data from a UK study suggests it could reduce the number of relapses in patients with PMR.

Additionally, it could mean that PMR patients can come off steroids on their own without the severe withdrawal symptoms that many patients experience.

PMR is also one of the most common reasons people are prescribed long-term steroid pills. According to the National Institute for Health and Care Excellence (NICE), PMR accounts for more than one in five (22 percent) of all steroid prescriptions.

The symptoms can be dramatic and debilitating, says Bhaskar Dasgupta, professor of rheumatology at Southend University Hospital. ‘It’s not just any pain – it usually starts suddenly and causes severe pain in both the shoulders and upper arms, and is so debilitating that you can’t turn over or get out of bed, get dressed, reach for anything or even sit on the toilet,’ he says. ‘Two-thirds of PMR patients also get pain in their buttocks and thighs.’

Steroids, such as prednisolone tablets, relieve the symptoms, but can also lead to weight gain and a ‘moon-shaped face’. Annie, however, managed to prevent this.

Most PMR patients need to take steroids for about 18 months, because controlling the underlying inflammation is a long process.

NICE guidelines state that most patients then take two years to reduce their dose from the standard 15mg daily dose (Annie was on a higher daily dose of 20mg), but one in four are still taking them after four years. Possible long-term side effects of steroid medication include increased risk of infection, thinning skin, fractures, high blood pressure, and cataracts and glaucoma.

According to Professor Dasgupta, about half of patients relapse when they try to reduce their dose. ‘PMR is a poorly treated and neglected condition,’ he says.

“And prednisolone is unsatisfactory for patients with recurrent symptoms and can have long-term side effects. Patients can have relapses as they taper their dose, and for these relapses there are currently few treatment options.”

One such option is methotrexate, a chemotherapy drug that suppresses 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 that sarilumab may offer an alternative.

In the year-long study, 118 patients, all of whom were taking steroids, received twice-monthly injections of sarilumab plus steroids, or steroids alone.

Both groups had their existing steroid doses gradually reduced, over 14 weeks for the sarilumab group and 12 months for the steroid group, because they did not benefit from a second drug.

The drug sarilumab could reduce the number of relapses in patients with PMR

At the end of the study, 28 percent of patients in the sarilumab group had a sustained remission of their pain and stiffness, compared with 10 percent of patients in the steroid group.

And while 57 percent of the steroid patients relapsed within a few months, only 24 percent of the sarilumab group did so.

Professor Dasgupta said: ‘This is an exciting development which has the potential to improve treatment options for patients with recurrent PMR who are trying to stop steroid medication.’

Although sarilumab also has side effects – including low white blood cell counts, joint pain, diarrhoea and infections – Professor Dasgupta says these are less debilitating than those associated with steroids.

Sarilumab is not currently approved for the treatment of PMR in the UK, but could be considered for NICE approval next year.

Annie’s symptoms came out of nowhere, disrupting her sleep and leaving her exhausted. ‘Paul had to massage my knees and legs in the morning to get me out of bed,’ she recalls. ‘I couldn’t climb stairs without him or get dressed without help. Just a few weeks earlier I had led a busy, active life; gardening, decorating, walking and taking lovely holidays.’

At first, Annie blamed the lingering effects of a recent bad case of flu. But when her symptoms worsened, she went to her GP. Blood tests showed elevated inflammatory markers, which, along with her history of symptoms, led to a diagnosis of PMR.

She was prescribed steroids. ‘They helped with the pain, but they also made me anxious and emotional,’ says Annie. ‘I must have driven Paul crazy with my crying.

‘He had to retire early and take care of me, because I couldn’t do so much myself.

‘I also developed cataracts, which can be linked to steroids. I bruised more easily because my skin had become thinner, and I had a lot of trouble sleeping.’

Annie was referred to several specialists and received numerous drug treatments over the years.

‘Methotrexate was causing my hair to fall out in clumps, so I stopped taking it,’ she recalls. ‘And then I was put on azathioprine, which also reduces inflammation but caused liver problems.’ Eventually, in 2016, Annie read about research into new treatments being conducted by Professor Dasgupta and booked a private appointment.

He diagnosed her with a related condition, in addition to her PMR, called giant cell arteritis (GCA) “that I didn’t know about,” she says. GCA causes inflammation of blood vessels, including the aorta, the largest blood vessel in the body that carries blood away from the heart. It affects up to 30 percent of people with PMR.

If GCA is not treated, it can lead to stroke and blindness. The arteries swell and become damaged, restricting blood flow to the brain and eyes.

“It was a lot to take in,” says Annie. “But Professor Dasgupta explained that there were other effective medications I could try, which was a relief.” In 2016, she entered a trial of a drug called sirukumab (which works in a similar way to sarilumab). Her symptoms improved, but the trial was stopped after the US drug regulator raised safety concerns about a higher number of deaths compared with a placebo group.

Despite everything, in 2019 Annie started taking tocilizumab, an immunosuppressant that works in a similar way and which she injects herself every ten days. She has also recently been prescribed another immunosuppressant, leflunomide, in the form of a daily tablet.

Her steroid medication has now been reduced to 4mg a day and her symptoms have improved greatly. Annie says: ‘I am now back to gardening, walking and decorating. I want other people to know that you are not stuck on steroids: there are newer treatments available for PMR that can really improve your quality of life.’