Three patients in the UK receive ‘groundbreaking’ treatment for lupus
Team upday
8 November 2024 · 09:00
Three patients in the UK have received a"groundbreaking" treatment for lupus on the NHS, which experts hope could eradicate the need for lifelong drugs.
Until now, CAR T-cell therapy in the UK has been used only in cancer patients, but researchers believe it could treat range of diseases including lupus and multiple sclerosis.
The therapy works by genetically modifying cells to enable the body's own immune system to recognise and attack problem cells, offering people a possible cure.
In the new NHS trial, led by University College London Hospitals NHS Foundation Trust (UCLH) and University College London (UCL), three patients have received CAR T-cell therapy for the most serious form of lupus, a condition that can be life-threatening and cause damage to the heart, lungs, brain and kidneys.
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Spanielmadlady
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Brilliant news, it’s attacked my lungs, spine and possibly the reason for subarachnoid haemorrhage I’m now 62 but suffered from late 20’s only recently getting diagnosis of possible lupus sle by respiratory consultant and radiologist
Mine is lungs and kidneys. What I also find exciting is that 1 recipient was at the kellgren centre in Manchester which gives hope that there wouldn't be a North South divide x
So good to read positive news, steps towards a potential cure. May well be a way off and may be only for those in severe/serious stages (rightly so to start) but would be a dream that one day, if successful, it could be a rolled out to all. x
This is great news, would be good to understand the safety profile of CAR T as even in cancer treatment, the long term safety profile is not yet established.
Thank you for alerting us to this. Sounds like a very positive step forward. Fingers crossed it can be rolled out to those most in need sooner rather than later. x
Yes.The article was alot longer and went on to say the patient at Manchester said she was feeling less tired and had more energy.I hope you are doing OK x
It does sound promising. I've had a bit of a year whilst my disease progressed to Lupus. I've still got pericarditis and they think pleurisy rattling around so each day is a surprise of what I can achieve. How are you? x
I suffer with pleurisy so you have my sympathy .I'm ok on abit of a downer at the mo due to a combo of things. While waiting for op on ankle I've torn the peroneal tendon so that needs surgery too. Mri showed arthritis in arch so I've been struggling with my feet in recent weeks. The tacrolimus is making me sleepy,grumpy and itchy. Feel people around me are turning a blind eye .Thanks for asking I appreciate it.
I hope they can treat you better now things have progressed and it will settle down for you soon .sending hugs 🫂 xx
I’m sorry things are so 💩 for you hun . You always take time to give such brilliant replies to people . It’s horrible when new problems arise as jeepers haven’t you got enough going on 😭. Sending you a gentle squeeze and I hope the sight of the 🌞 today in the UK at least helps our energy . Being itchy is just the worst . Take care angel xx
I saw this too spanielmadlady, doesn't it give us heart that there could be life without regular medications needed.? It does seem to be for the more severe cases at the moment but later on who knows!?!. It helps keep us going with this difficult illness. Hope your as well as possible. Xx
Hi misty. Yes it does who knows one day it might even become a prevention treatment.I'm ok recently started on tacrolimus so struggling with a few side effects. Still in ankle brace waiting for op.
Sorry spanielmadlady your struggling at the moment with side effects of a new drug and still waiting for ankle op. I don't know tacrolimus at all. How long have you been taking it?. Could you ask your Rheumy nurse for advice?. Do hope you hear about ankle op soon, its so hard waiting. I'm waiting to go to my foot surgeon for advice on 4th/12 as my latest op is only a partial success. It feels like he's missed part of a trapped nerve!. There's always something isn't there?.
6 wks. Had a phone check up with Rheumatology pharmacist after 3 wks and she said just take a 1 day antihistamine and try and ride it out. Gp said the same. I don't think they use tacrolimus much the hope is it will allow me to reduce my steroid burden as the mmf has failed to do.I need reconstruction surgery on my atfl ligament using titanium anchors into the bone and then surgery to repair a tear in the peroneal tendon if he can't do it during first op.i live in an ankle brace.ive also got arthritis in the arch.
On the upside I don't need an op on the elbow I broke. after 9 months it's finally healing itself.
I'm on Azathioprine now but waiting for it to click in. Urgh, you are going through an awful lot. It's so very hard when our illness becomes our 'daily' bread as it were. I do so hope you get a date for your Op soon. xx
I hope the aza works for you.it didn't for me by week 7 I'd developed drug induced hepatitis and was quite poorly. Doesn’t look like op will be this year. I had my pre op in Aug and it expires next week. I also need 4 weeks notice as surgeon wants mmf stopped for 4 weeks beforehand. I'll be non weight bearing in plaster housebound for 6 weeks . I've had several offers to walk Hugo. Son works full time he can't do it all .
I remember you posting about your reaction. How we react to drugs is such a lottery. I have a feeling that my disease is breaking through as my chest has started to do it's thing of soreness when breathing in deeply and tender ribs but I think there is wiggle room to increase the dose. Just hoping then that I can decrease my HDX as I have lost nearly a stone and so am way above the recommended 5 or less mg per kilo.
What a waste to do all your pre -ops without a date. Honestly! It certainly sounds like the type of Op that will need careful planning around. Glad you have support for Hugo, it takes some of the stress out of it. Do let us know when you get your date. I'm sure the forum can help keep you entertained and occupied!! xx
Hi. Yes at last it seems we are being recognised and more people will become aware. It was even on national news on Sky! Lungs and heart are my main problem, too late for me at 68 I guess but wonderful for the younger people hopefully. I will just plod on with the azathioprine, pred and hydroxy, works for me luckily most of the time .
It is interesting that it says only used for cancer so far because actually I believe that stem cell treatment is already being used for younger patients with severe Systemic Sclerosis in UK and CAR-T has already been trialed in this cohort - maybe part of same trial? ard.bmj.com/content/82/8/1117
I was reading up about this myself because I’m newly on Rituximab, as well as Mycophenolate, for my SSc but not really noticing much change so far.
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