Article in today's paper about PMR

[Purplegloss]

Someone called Jo Waters (doesn't say she is a Dr) has put a full page article in the Good Health section of the Daily Mail today, with input from Professor Dasgupta about PMR. Just wondered what people's thoughts are about it!!

[DorsetLady PMRGCAuk volunteer]

Nothing in the online edition [as yet anyway] - so can’t really comment. Can you summarise what it says please…

[PMRpro Ambassador]

Jo Waters is a medical journalist. As DL says, not online yet - and I am NOT going to buy it to read it!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

another - but still not readable —

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to DorsetLady]

Sensationalist headline - scaremongering!

[Highlandtiger]

Managed to access through a 3rd party site. Copied and pasted below in 2 parts (too large for one post apparently).

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.

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).

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.

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.

[Highlandtiger]

Part 2

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.’

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.uk

[PMRpro Ambassador in reply to Highlandtiger]

Oh right - and how did SHE get tocilizumab for PMR? And she is hardly typical of the vast majority of patients is she ...

[Highlandtiger in reply to PMRpro]

I was wondering that too! 🤷‍♀️

[PMRpro Ambassador in reply to Highlandtiger]

Especially in England.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Because he diagnosed her with GCA ….

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

[PMRpro Ambassador in reply to DorsetLady]

How very convenient.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Quite….

[Marypatmorgan in reply to PMRpro]

Because she said she went on to get GCA I guess

[Grammy80 in reply to Highlandtiger]

Thanks for posting this Highlandtiger !💞

[Bcol]

Hmm, intriguing, does make you wonder!!!!!

Given that Pred has given me no side effects, that I know of, and

"Although sarilumab also has side-effects – including a lower white blood cell count, joint pain, diarrhoea and infections"

I think I'll stick with my Pred thank you.

[PMRpro Ambassador in reply to Bcol]

I think it is only worth it if you are stuck at well above 5mg. The equivalent biologic tocilizumab is pretty heavy duty and can cause a load of worse nasties than pred if you ask me - diverticuitis, low neutrophils, you have to stop it if you get an infection which you don't with pred. You won't get off TCZ or sarilumab until the PMR is in full remission - no different from pred. And I haven't got under 7mg with TCZ.

[Bella59 in reply to PMRpro]

I have been on Tocilizumab,Sarilumab,Erelzi for my Rheumatoid A.They did nothing for my illness.I am hopefully near the end of Pmr after five years.I was off Pred in2021 but it came back fairly quickly.Last week was down to 1mg but groin pain niggling again recently.So put back up to 5mgs for 4 months by Rheumatology nurse.Having to change meds for RA again finished Filgotinib,going onAdalimumab injection plus Methotrexate injection which i already take.We are all individual what suits one person is no good for someone else.Trial and error i'm afraid.Just grateful to be given the chance to try different meds.Now on med number twelve.

[PMRpro Ambassador in reply to Bella59]

If tocilizumab and sarilumab did nothing at all for your PMR symptoms - there must be a question as to whether it was the PMR we talk about here at all. Both those biologics target the cytokine IL-6 which is the primary mechanism of the inflammation in PMR. It is not like RA where there are a lot of mechanisms and a wider range of biologics which can be used and it is indeed a trial and error approach as to which works for you. In the case of PMR as we mean it, there is far less choice, the available IL-6 antagonist biologics are not yet approved for use in PMR and the option is pred. Methotrexate and leflunomide are sometimes used and they seem to work for a small group of patients to get to a lower dose of pred. But in the final analysis, if you have PMR/GCA, the reliable option is pred and tocilizumab if you can get it - which is often not the case in the UK and even then, only for a year and then you are back to pred and other options that probably won't work,

[Bella59 in reply to PMRpro]

I only tried Tocilizumab when i had pmr must admit was not on it long as i had to stop to get hip replacement.

[DorsetLady PMRGCAuk volunteer in reply to Bella59]

If none of that list of medication helped -are you certain the diagnosis is correct?

[Bella59 in reply to DorsetLady]

Yes i have Rheumatoid Arthritis.I am not alone in having to try various medsI have had two knee and two hip replacements.

[DorsetLady PMRGCAuk volunteer in reply to Bella59]

Okay

[AtopicGuy]

The article is based on this US-based study from October 2023, which includes Dr Bhaskar Dasgupta as an author:

pubmed.ncbi.nlm.nih.gov/377...

Quite rightly, those not injected with sarilumab were injected with a placebo instead. The study was funded by Sanofi and Regeneron Pharmaceuticals, the makers of sarilumab (brand name Kevzara).

[Purplegloss]

Thanks for all your replies.