Any update on this Lupus cure study from 2015? - LUPUS UK

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Any update on this Lupus cure study from 2015?

JohnJohnson11 profile image
6 Replies

Hey, I don't have Lupus myself but my gf does, so I spend time secretly looking for good news.

I found this article very interesting :

healthline.com/health-news/...

They seem to have reversed the effects of lupus in mice. I am not aware of how long it typically takes to go from mice to human trials, or if this even has any funding. Just that it was printed in 2015 and I hope something has happened in the last seven years. Does anyone know more about this? You can read the original research article here if anyone is interested in more details (and has the qualifications to follow it) science.org/doi/10.1126/sci...

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LottieLou96 profile image
LottieLou96

Interesting study and I'm secretly impressed that you're looking up and supporting your gf. X

I only personally know from when I used to research, as I was a biomedical scientist, that epigenetics, and the ability to effectively turn on and off genes at will. One example of this is turning on and off glow in the dark mice, or making them change colours by effectively the touch of a remote button which alters gene expression that was added to mice DNA originally from a jellyfish.

Another trending topic is that of gene therapy, effectively replacing the faulty gene with a correct version. It must be known that there are not too many cases of lupus that can be put down to a single genetic mutation though, and it is often a combined number of predispositions genetically and environment that ultimately lead to presentation and penetrance of the disease. largely outlawed in the UK since the 1990s or before due to the aspect of 'playing God' and it's potential for abuse and as we've seen in Japan it's use to make designer babies with particular defined and asked for genetics. Watch the film Gattaca and it gives you a good insight into a world made of designer babies/it's not as idealistic as it sounds.

At least treatment and recognition is improving again, it is being actively taught in medical schools and thus more recognized and quality of care should hopefully improve. Research into AI is booming, and I myself, have looked into scleroderma and links to particular pathways and have altered genetic signalling of particular inflammatory pathways to induce remission in mice. Will it work in humans? We are ultimately a lot more complicated, and mice are bred genetically to incorporate a single gene that can potentiate lupus or other AI disease, therefore we are looking at a reduced interplay of genetic variations etc.

Remain hopeful, and with sooner diagnosis and improved symptom management we have a good shot of living good lives whilst finding this cure. It won't be a one size fits all cure, but there are definitely cases that I'm sure with hardwork be cured. Even with our knowledge at present.

BW

Lottie

JohnJohnson11 profile image
JohnJohnson11 in reply to LottieLou96

Thanks for the detailed reply Lottie. My gf just recovered from covid and has had a bad flare up, it's the worst I have seen her and it just makes me feel desperate to help but I don't know how. Somehow looking at research feels better than nothing.

Seems there are hypothetical possibilities, I am just trying to understand something that may realistically be an option, obviously the sooner the better if it were to exist.

LottieLou96 profile image
LottieLou96 in reply to JohnJohnson11

Hopefully your gf has a good rheumi to help support her alongside yourself. I'm sorry she's having a hard flare up at the moment it can be extremely difficult at times indeed. Post covid pneumonitis is common, and probably more marked in lupus folks, so inflammation around the lungs which hopefully will settle in the next few weeks.

I'm sorry I can't be of much help. A cure for SLE is almost like a cure for cancer. It's baby steps but when you look back you can see how far research and help has come. Research itself in the UK is a very long, arduous but necessary process I'm afraid and trials are extensive to ensure safety and efficacy are maintained. Research is promising though.

These few links below might be unhelpful, or may provide some hope or at least food for thought.

frontiersin.org/articles/10...

astrazeneca.com/media-centr...

healtheuropa.eu/successful-...

pharmaceutical-journal.com/...

sunrise profile image
sunrise

How amazing that you are doing research for your gf! Love that! There is also a lot of more recent research coming through regarding particular bacteria and the gut microbiome and its relation to Lupus that's worth looking up. You'll find it easily if you google 'microbiome+lupus' It takes quite a long time for research to filter into mainstream medicine and at the moment the probiotic they are talking about isn't available to buy as a supplement, apparently it will be in the 'next generation' of probiotics. It's commented within the literature that it is possible one line of treatment for Lupus will (possibly) be in the form of probiotics. Having said that, as a researcher, it's important to also read the literature with a analytical eye and recognise that the probiotics that seem to be missing or over growing in lupus could be a result of the condition rather than a symptom of it - and that question is forming part of the research too.... Happy reading. If you can't find it online for an reason don't hesitate to give me a shout and I'll share some links....

all the best

JohnJohnson11 profile image
JohnJohnson11 in reply to sunrise

Not for her exactly, I don't tell her about it because I don't want her to know how much I am stressing lately. It's just to try and be hopeful, but if I find anything promising then I would like to share it with her to keep her positive.

I will look at the microbiome studies you mentioned, I know there have been many links made to our gut bacteria for many illnesses both physical and mental, but I wasn't aware of the lupus link.

She has another doctor appointment tomorrow because she is very unwell and it hasn't improved, she is braver than I am though I am a mess.

Tiggywoos profile image
Tiggywoos

Hi John I think it’s fantastic you are looking into the illness and being so supportive .

Do you think your GF would join this forum ? It’s so supportive and there is a fantastic knowledge base . You take care of yourself and I really hope the drs appointment was helpful

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