Research to reset immune systems is happening

The BBC News in the UK reported as follows this morning:

An experimental treatment that resets a malfunctioning immune system has put the disease lupus into remission in early UK trials.

Experts say the approach could potentially treat similar disorders including multiple sclerosis and rheumatoid arthritis [and of course PsA]

“Lupus at its worst was in bed, unable to move, going downhill rapidly, possibly dying…now I’m living,” she told me.

But speaking to Katie, a year-and-a-half after her experimental treatment, she has the energy and zest for life of a woman reborn.

“It’s amazing. I’m living like a normal person, I’m literally saying yes to anything. I sort of forgot that you could feel this good,” she said.

The difference is an experimental treatment Katie had to reset her immune system at University College London Hospitals.

It works by engineering a civil war within the immune system – to get one part to destroy the part causing disease.

Two types of white blood cells are involved - the B cells and T cells which normally protect the body from infection.

But in lupus, and other autoimmune diseases, the B cells go rogue and produce antibodies that can attack the body.

So scientists took millions of Katie’s own T cells and genetically modified them in the laboratory. Their targeting mechanism was changed so now they attack B cells and these are put back in the body.

Once inside, the T-cells destroy both the rogue and healthy B cells. But months later new healthy B cells grow – effectively resetting the immune system.

There were no guarantees it would work and Katie remembers a letter to her GP explaining “she knows she might die” because of the risks involved.

And it was a gruelling processes that also involved chemotherapy to prevent the modified T-cells being rejected.

But Katie had the treatment in November 2024 and is still well, no longer needs medication for her lupus and her organs have recovered.

“I can live to an old lady with these kidneys and that is phenomenal. My heart’s much better, my lungs much better. My blood disorder is no longer there,” she said.

Out of the first six patients treated, five are still in remission. One has improved symptoms, but had a lupus flare after 11 months.

The team, presenting data at the EULAR European Congress of Rheumatology, said their patients were still well after more than 18 months.

However, it is still uncertain how long the treatment will last before the lupus returns and how successful it will be when trialled in more patients.

Dr Maria Leandro, a consultant rheumatologist at UCLH, told BBC News: "If we were to have patients in remission for three-to-five years consistently, that would be a major gain in lupus, it may be longer than that, but we’ll have to wait and see.

“This is clearly a significant step forward towards a possible cure, so it is very exciting.”

This approach – known as CAR-T or chimeric antigen receptor T-cells – is already an approved treatment in blood cancers including some leukaemias and lymphomas.

This is some of the earliest data suggesting the approach can also be used in autoimmune disease.

Many of these diseases work in a similar way to lupus. It means there is the potential for CAR-T therapy to be used more widely to target errant B cells.

Dr Claire Roddie, from UCL, told BBC News: "We’re really excited about the potential of CAR-T cell therapy for autoimmune diseases.

“Multiple sclerosis would be one condition, we’ve got a clinical study running right now, and rheumatoid arthritis, for instance, huge number of patients affected by this disorder… huge potential.”

Katie does not know how long the treatment will last, but she is taking every opportunity she can.

“I want to climb mountains, I’d love to do Kilimanjaro, I’d love to do a triathlon again, I just want to participate, and I want to say yes to as many things as I possibly can.”

So things are moving along finally.

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That is absolutely amazing!

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Isn’t it? I knew it worked for some cancers but it was so lovely to see the results for something like Lupus. If you had a child aged 10 with PsA now, their future is going to be far different consequently given this sort of breakthrough.
I’ve spent the last 10 years since being diagnosed being so frustrated they could never know which med would work better for me as against you for example. Now there is a real possibility that that roulette wheel will be no longer required.

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That’s amazing and hopeful news. I would love to send this information to a “supportive” friend who in a recent email said, “with all the doctors you have, haven’t they figured out what’s wrong with you yet?” I don’t want to suggest this friend is unintelligent, but I fear even a basic explanation of autoimmune disease is a step too far.

But for those of us who’ve lived with autoimmune conditions for decades, this is the kind of breakthrough that keeps us going.

Do send it to your friend. The more we all educate people about PsA and autoimmune diseases generally the better frankly. Most people with any autoimmune disease ‘looks’ perfectly normal yet often their pain levels are so off the scale of any sort of reasonableness. And working out which part of your immune system is attacking you is also really difficult especially as there is no ‘definitive’ test for PsA so it’s a diagnosis of excluding other things and carefully analysing your symptoms. Something far too many rheumys sadly are extremely bad at doing too.

And yes I get really excited about this type of research too. It’s been coming for a while once they started to treat some cancers with this technique but it now really needs to pour into all the autoimmune diseases too.

I wish it were that easy. This is about the closest friend that I have. Known her since Kindergarten. We did everything together and she was my one and only bridesmaid. But, I didn’t realize her limited understanding and inherent lack of interest in most things, including medical. If there’s a medical problem, you must be doing something wrong.

When our eldest son (now 45) was diagnosed with Type 1 diabetes at age 4, her response was, “you must have been giving him way too much sugar. That’s what happens.” I did explain the basics then but it came down to too much sugar killed his pancreas in her mind. I should have known then explaining anything medical is pretty much useless. For one, I poison my body by the drugs I’ve taken so what do I expect? I don’t know what her chiropractor, whom she sees regularly, tells her. If I were realigned regularly instead of heading to doctors, my joints would not be so messed up in the first place. I don’t think the idea of the body attacking itself flies with her. Sounds like a lot of hocus pocus.

I agree that educating people about autoimmune diseases is important, but if my friend is any indication, there is a lack of interest, disbelief or impregnable brick wall on the subject. I’ve never been more surprised and disappointed when friends closest to me and my husband for years have been the least supportive and dismissive. We barely communicate now. Four live in Lincolnshire and we had some fun times together there and in Canada.

One day, science will crack what’s behind autoimmune diseases and perhaps explain it in simple terms that everyone can understand. And as my friend says maybe doctors will finally figure out what’s wrong with me.

Life is difficult enough with this disease, we shouldn’t lose relationships because of ignorance. The ones who have stood out in my mind as true friends actually ask me to spell the name of the disease so they can look it up themselves. But very few actually take the time to know me by discovering just a bit of what we endure. I would love to lobby for a new name for PsA…when people hear the word “arthritis” they talk about aunt Sally or uncle Bob who had arthritis 60 years ago and treated it with warm cooking oil…”Have you tried….”

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That is sad. And yes I had one friend whose other friend managed her ‘arthritis’ with apple cider vinegar. I nearly poured a whole bottle of the stuff over her! :rofl: If only it was that easy…

@Amos yes - we’ve needed a new name for PsA for years. I rarely try to use the word ‘arthritis’ at all these instead I call it an spondyloarthropy! And I’m not sure I spelt that correctly either but it tends to shut up the ‘advice’ which is always useful.

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‘when people hear the word “arthritis” …’ yep, that never stops. I too rarely use the word ‘arthritis’, I just say I have an autoimmune disease. And anyway you need to be well under 40 for people to attribute physical difficulties to anything other than ageing. I am clocking up co-morbidities / conditions that are perhaps made worse by auto-immunity. Most docs seem to acknowledge the link. Went for breast scan yesterday but could not remember when I last had one. Radiographer scanned through my history, listing a bonkers litany of ills as she did so.

We are experiencing a tough heatwave here in UK. This country’s high humidity makes temperature feel higher. It will pass.

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We do indeed need a new name for PsA, RA and other inflammatory rheumatological diseases. I’ve tried the rheumatoid disease route and get a big "what’s that? From the few that enquire about my current health situation. Despite my best efforts, it comes down to, “oh, you mean arthritis. My thumb and pointer finger hurt like hell from that.”

I don’t do much better with autoimmune disease as, I’m afraid, it’s a difficult concept to swallow. I listened to a feature on the radio with a doctor talking about autoimmune diseases and not in a positive way. Anyone listening was left thinking we are all slightly unbalanced mentally and need more fibre in our gut. And stop making more of our airy fairy conditions than they really are. Yes, I should have sent something in to set the record straight, but I was busy dealing with my airy fairy condition. I missed the introduction to this doctor so doctor of what I don’t know. And turned it off when I had all I could take.

The RA group I still involve myself in daily feels the same way about the need to change the arthritis to anything but that. I don’t have RA, it would appear, but the tight little group within the larger group wish me to stay. So I guess I’m alumnae?

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Sybil, I’m glad to hear you went for a breast scan if you can’t remember when last you had one. That’s leaving it too long. As a breast cancer survivor, I can’t emphasize the need enough. My cancer was caught at an early stage and dealt with early and successfully with minimal surgery and radiation treatment. Cancer free 2 years now with one scare in-between which was enough for me. As I am fortunate enough to live 15 minutes from one of the newest Breast Cancer Centers in Canada, my breast cancer was dealt with incredibly fast.

I have friends in the UK giving us updates on the heatwave. Goodness, keep as cool as you can everyone over there.