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Scientists discover a cause of lupus, possible way to reverse it

news.feinberg.northwestern.edu

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Re: Scientists discover a cause of lupus, possible way to reverse it

#131

Post by the_sleaze_ »

fasa99 wrote: post #121
zeagle wrote: post #71

This group presented an abstract at ACR in the fall prior so it's nice to see it published now. https://acrabstracts.org/abstract/cxcl13-t-cell-differentiat... if you don't have journal access to the Nature article. Kudos to them for landing a nature publication but I really would temper this level of excitement (??a top link on HN??) at a basic science research publication discussed in a press release from a univers…

Exactly. When our car doesn't run well, a car with perhaps 20,000 parts, we take it to the mechanic who says "yup, issue was your spark plug, fixed". And even then, of course, the car issue may have been multifactorial. Maybe the spark plug failed because the fuel/air mix was off, for example, the spark plug was the symptom. But then we leap from the car with 20,000 parts to a body with a trillion cells each cell wit…

The thing about a car is when the bumper gets detached you can't just strap it down to the front of the car and wait until it reattaches itself.

It may be (surely is) that something like lupus is multifactorial and impossibly complex, but knocking out the largest cause of something can be a reliably cure.

Look at antibitoics - a truly "replace the sparkplug" fix for let's say treating a MRSA infection. Doesn't treat cell damage, doesn't treat inflammation, doesn't treat pain, doesn't treat hormonal imbalance through the body. It doesn't even target the specific infection it kills indiscriminately. Yet "give them antibiotics until the MRSA goes away, or if it doesn't give them more antibiotics until it does" it super hand-wavy.

Re: Scientists discover a cause of lupus, possible way to reverse it

#132

Post by avgDev »

carynh wrote: post #97
avgDev wrote: post #14

Earlier quoted context omitted.

I've encountered an individual who had fibro, me/cfs, pots diagnosis. Turns out his small nerve fibers were fried by an antibiotic. His skin punch biopsy showed reduced fibers. This may not be the case in everyone, but SFN is extremely under diagnosed. He was a chemist, and he ended up healing all his symptoms with pirenzepine. If I recall correctly they did the skin punch biopsy again and his physician was stunned w…

> He was a chemist, and he ended up healing all his symptoms with pirenzepine. As in taking it orally for his SFN? That sounds equally fascinating as it sounds unlikely to me so I'd def love to read a bit more about it!

Yes, he did take an oral dose, I believe it was higher than recommended dose, so some risk involved. I don't really see any studies on oral administration, but the new cream showed systemic relief.

Re: Scientists discover a cause of lupus, possible way to reverse it

#133

Post by wholinator2 »

aroopchandra wrote: post #126

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains, which made daily activities difficult. This happened during the COVID lockdown, which helped me maintain my job. I did a lot of research and tried various treatments. Functional medicines and expensive vitamins didn’t help. I read about long-term fasting and…

I have crohn's disease which is also autoimmune and directly related to ingesting certain things. I think a lot of autoimmunity has to do with intestinal bacteria and their relationship to our innate immune system. And to a lesser extent it seems that almost every aspect of life is effected by what we eat, how we feel, how we act, how we grow and die. Maybe in 100 years we'll have fecal tests and bacteria pills to catch and prevent a paradigm shifting amount of ailments.

I know I've tried tons of different diets and exclusions and things. I've got a pretty good list in my head of what i can and can't eat but it seems to change q bit every couple years. I used to not tolerate bread but eat sugar and it seems to have switched some time in the last decade. Anyways, i wish you luck with your journey and I'm glad you've found something that works for you

Re: Scientists discover a cause of lupus, possible way to reverse it

#134

Post by aroopchandra »

wholinator2 wrote: post #133
aroopchandra wrote: post #126

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains, which made daily activities difficult. This happened during the COVID lockdown, which helped me maintain my job. I did a lot of research and tried various treatments. Functional medicines and expensive vitamins didn’t help. I read about long-term fasting and…

I have crohn's disease which is also autoimmune and directly related to ingesting certain things. I think a lot of autoimmunity has to do with intestinal bacteria and their relationship to our innate immune system. And to a lesser extent it seems that almost every aspect of life is effected by what we eat, how we feel, how we act, how we grow and die. Maybe in 100 years we'll have fecal tests and bacteria pills to ca…

I got fecal tests and used expensive supplements and vitamins as recommended by a functional doctor, but they didn't help. I looked into how immune suppression medicines like Benlysta work and tried to mimic their effects naturally to get relief and hopefully stop using medicine. I think food can help manage many side effects of immune-related diseases, even if it can't cure them.

Re: Scientists discover a cause of lupus, possible way to reverse it

#135

Post by COGlory »

aroopchandra wrote: post #126

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains, which made daily activities difficult. This happened during the COVID lockdown, which helped me maintain my job. I did a lot of research and tried various treatments. Functional medicines and expensive vitamins didn’t help. I read about long-term fasting and…

I'm curious if you've looked into N-Glycolylneuraminic acid and whether that could be the issue? Does chicken cause an issue for you?

I'm sorry to hear about your Lupus diagnosis, and glad it's in remission. My doctor wanted to diagnose me with Lupus due to the facial rash and arthritis/joint pain, but I came back negative in all the bloodwork, which I think means about 98% sure don't have it. I found that I can treat the joint pain effectively with SSRIs (Fluoxetine, 20 mg is enough to wipe it out after a few weeks). My mother has MCAS and my sister and aunt have UC, so I feel like I'm tripping through a minefield trying to navigate whatever autoimmune issue this is....and I have a PhD in biochemistry.

Re: Scientists discover a cause of lupus, possible way to reverse it

#136

Post by Finnucane »

fasa99 wrote: post #121
zeagle wrote: post #71

This group presented an abstract at ACR in the fall prior so it's nice to see it published now. https://acrabstracts.org/abstract/cxcl13-t-cell-differentiat... if you don't have journal access to the Nature article. Kudos to them for landing a nature publication but I really would temper this level of excitement (??a top link on HN??) at a basic science research publication discussed in a press release from a univers…

Exactly. When our car doesn't run well, a car with perhaps 20,000 parts, we take it to the mechanic who says "yup, issue was your spark plug, fixed". And even then, of course, the car issue may have been multifactorial. Maybe the spark plug failed because the fuel/air mix was off, for example, the spark plug was the symptom. But then we leap from the car with 20,000 parts to a body with a trillion cells each cell wit…

Sure, a car has a lot of parts, but when one of them is leaking oil where it's not supposed to, you don't have to check every part to see where the problem is.

Re: Scientists discover a cause of lupus, possible way to reverse it

#137

Post by aroopchandra »

COGlory wrote: post #135
aroopchandra wrote: post #126

I was diagnosed with lupus a few years ago. My mom also had it and passed away after 10 years due to complications. My initial symptoms were severe joint pains, which made daily activities difficult. This happened during the COVID lockdown, which helped me maintain my job. I did a lot of research and tried various treatments. Functional medicines and expensive vitamins didn’t help. I read about long-term fasting and…

I'm curious if you've looked into N-Glycolylneuraminic acid and whether that could be the issue? Does chicken cause an issue for you? I'm sorry to hear about your Lupus diagnosis, and glad it's in remission. My doctor wanted to diagnose me with Lupus due to the facial rash and arthritis/joint pain, but I came back negative in all the bloodwork, which I think means about 98% sure don't have it. I found that I can trea…

I haven't looked into N-Glycolylneuraminic acid specifically. For me, all types of meats, including eggs, chicken, and lamb, increased my inflammation levels. From what I understand, correctly diagnosing immune diseases can be quite challenging. My doctor once said it’s more of an art than a science. Because my mother had lupus it was easy in my case. While I’m not against medications, they often come with side effects. For example, immunosuppressants are necessary for high inflammation but can increase the risk of cancer. Even SSRIs have side effects.

When I had pain, I tried both medications and dietary changes, using an engineering mindset to isolate variables. Although I listened to my doctor, I also took matters into my own hands and did my research. My doctor initially doubted that changing my diet would help but did recommend the Mediterranean diet. He still doesn’t believe that food helped since there’s no clinical research backing it, and it’s not something commonly taught in medical schools.

The best part about experimenting with food is that it's easy and inexpensive to test on oneself. In my case, I was fortunate that my joint pains allowed me to observe the effects of my dietary changes within a week or less. Initially, I expected results in a day or two, but I soon realized that I needed to experiment for at least a few weeks to see the full effects. These days, I consume small quantities of eggs every few weeks and haven't noticed any significant increase in inflammation.

Re: Scientists discover a cause of lupus, possible way to reverse it

#140

Post by w10-1 »

zeagle wrote: post #71

This group presented an abstract at ACR in the fall prior so it's nice to see it published now. https://acrabstracts.org/abstract/cxcl13-t-cell-differentiat... if you don't have journal access to the Nature article. Kudos to them for landing a nature publication but I really would temper this level of excitement (??a top link on HN??) at a basic science research publication discussed in a press release from a univers…

Yes, pathways are complex and adaptive, but as I read the abstract (thank you!), they're suggesting a treatment path.

The potential treatment is that the protein JUN can block IFN's increasing CXCL13 pathologically.

It's testable in that JUN itself can be produced and delivered during acute phases to reduce flares, and could itself be a therapy.

More lasting gene diagnostics and therapies may come from checking for dysregulated genes in the pathway and injecting genes to produce JUN.

It's not promising, though, to the extent JUN wouldn't address an underlying IFN dysregulation.

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