Exciting times.....especially for the younger generation

[Spanielmadlady]

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.

[Numptybrain]

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

[Spanielmadlady in reply to Numptybrain]

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

[Numptybrain in reply to Spanielmadlady]

I’m stage 2 CKD I live in northeast so yes that’s good. We can only hope.

Take care

Wendy xx

[Hoofprints in reply to Numptybrain]

Do you mind sharing the way in which it has attacked your spine? I had meningitis several years ago which was assumed to be viral, but I know wonder if it was indeed autoimmune.

I have a lot of neurological symptoms, including severe periodic spinal pain and altered sensations in several areas of my body.

Thank you

[Numptybrain in reply to Hoofprints]

I have a lot of degeneration from an early age also spinal and cervical stenosis etc way too young for it . I too had a lot of viral/ bacterial infections which is known to cause autoimmune disease. My spine has been affected greatly, my lungs, liver as I’ve had pancreatitis a few times and now my kidneys. Like most with sle your organs and affected unfortunately, I’ve been lucky that I got treatment immediately although they didn’t know the cause at the time.

Good luck

Take care

Wendy xx

[Hoofprints in reply to Numptybrain]

Thank you so much for your reply. You've certainly been through it! I hope you have an easier time going forward. These autoimmune conditions are so cruel 💐

[Numptybrain in reply to Hoofprints]

Every chronic condition is cruel but we just have to adapt and move forward, thankfully medication is getting better, even with its side effects. I can now just be thankful that I had a fantastic respiratory team that knew something wasn’t right and a fantastic radiologist who helped them join the dots too.

[smeackles]

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

[BukkyApampa]

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.

[Spanielmadlady]

Yes like so many new treatments it takes a long time hence why it's more exciting for the youngsters. X

[RosieA]

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

[Spanielmadlady in reply to RosieA]

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

[RosieA]

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

[Spanielmadlady in reply to RosieA]

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

[Tiggywoos in reply to Spanielmadlady]

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

[Spanielmadlady in reply to Tiggywoos]

Thanks for the squeeze Tiggy . Yes there is a strange yellow blob visible in the sky this morning ...chilly though.Ear scratch for Prince tiggy 🤗 x

[misty14]

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

[Spanielmadlady in reply to misty14]

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.

Sending hugs 🫂 xx

[misty14 in reply to Spanielmadlady]

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?.

Sending 🫂 to you. TAKE CARE. Xx

[Spanielmadlady in reply to misty14]

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.

Oh I hope not.i hope he can help on the 4th Dec .

Hugs back to ya 🤗 xx

[misty14 in reply to Spanielmadlady]

6wks spanielmadlady is long enough for it to be settling down i would have thought!. I do hope the antihistamine is helping. Tacrolimus isn't as well known /used as the other DMARDS but i hope it allows you to reduce the steroids. 🤞 What dose are you on?.I really hope you only have the one op. Sounds very invasive which will need a long recovery so a lot of stress on the body!. You must be in a lot of pain now eith it so i hope you hear soon. Thank goodness your elbow has healed.

My foot is very straightforward by comparison but painful. Thank you for your good wishes and take care. Sending healing 🫂's to you. Xx

[Spanielmadlady in reply to misty14]

2 mgs twice daily just now . I've started to drop steroids this week for the first time since last year.the antihistamines help a little but when I take the last tacrolimus at 10pm which is set in stone ( tac timings must be precise believe it or not) I then can't sleep for itching. I did however sleep last night because I took 2 1 a day antihistamines 🤫. May need to ask gp for fexofenadine. Xx

[misty14 in reply to Spanielmadlady]

Well done spanielmadlady for reducing the steroids so far down. Its not an easy process. You've done really well!. I"m stuck on 5-6mg at the mo and must try to go lower. I notice that your taking 2mgs pred twice a day. Is that specially arranged as usually you take all the dose together first thing in am as they can cause insomnia otherwise.? Its hard juggling all the doses of different meds isn't it?. My mum takes fexofenadine and finds it very beneficial so i hope your gp will agree!!. Not easy getting appt's to see them is it?. Best of luck with everything. Take Care. Xx🤞💕🤞🦋

[Spanielmadlady in reply to misty14]

Sorry misty we've got crossed wires. I'm on 2mgs bd of tacrolimus currently on 9mgs of pred can't get below 7mgs they hope to get me down to 5mgs of pred with the help of the tacrolimus but say I may never come of pred after 10 yrs but 5 mgs is better than 10mgs x

[misty14 in reply to Spanielmadlady]

That's ok spanielmadlady, its so easy to have crossed wires on here. I do so hope the tacroljmus does its job and you halve your steroid dose. 9mg is better than 10mg. Each step is an improvement because it is so hard. 5mg is a safer dose daily and i hope you can come off steroids completely. You've still done really well.

To give you some heart hopefully, i've been on steroids for 30 years and i'm struggling to come off them with developing Addison's. Despite this my lstest test shows there might be some recovery in my adrenals so i'm going to try reducing again. My Endo says its worth trying so you never know spanielmadlady. All the very best. Xx

[Spanielmadlady in reply to misty14]

Sorry you have developed Addisons. Last time I came off them in 2018 i ended up in hospital with pneumonia and the time before that was bi lateral pneumonia at Christmas 2014. pred has been the only drug to keep my lungs stable. I hate the way I look with the steroid bloat etc but I'd be happy at 5 mgs. Take it easy sweet xx

[misty14 in reply to Spanielmadlady]

Thank you spanielmad lady..Its such a pity that steroids can be life saving, life enhancing but they come with such serious side effects and need juggling all the time. 5mgs would be really good, less worrying,🤞you manage it. Xx

[RosieA]

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

[Spanielmadlady in reply to RosieA]

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 .

Thanks Rosie xx

[RosieA in reply to Spanielmadlady]

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

[Potatoheat]

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 .

Good times !

[OldTed60]

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.