raise your hand if you have an autoimmune disease which may or may not be lupus (I've tested weakly positive for lupus since the 80s, but current diagnosis psoriatic arthritis) and you were been disappointed so many times that you are afraid to hope.
Please give us patients a LUPUS clinic so we dont have to go to a dozen different places to see different doctors...Chronic fatigue syndrome comes with Lupus. So everytime I physically stress myself I am bedridden for days..this "Lupus Clinic" would help me and others with Lupus so much more than a new drug.
So, with Lupus you may see many specialists but the appts are at will and can be done separately. It is not like a transplant or CA patient who has appt after appt ALL day long. You can go see Rheum one day, Pulm one day, etc. I have 3 Autoimmune diseases including Lupus. I work a FT job (physical healthcare job), often OT and manage my appts. I think a Lupus clinic is unnecessary. There are many more debilitating diseases that deserve clinics like this. Autoimmune is not one of them.
@beckyl306 You certainly know nothing about how debilitating me/cfs is by itself, much less having an autoimmune disease such as lupus along with it. @FloridaForForever has this experience, and knows exactly how debilitating it can be. Just attending one appointment for a few hours could leave you out of commission for a few days. Lupus patients are as much deserving of a clinic, as any other patient with a chronic illness.
@@beckyl306I'm glad you are doing so well and so functional, but you seem clueless and heartless for someone with Lupus AND who works in healthcare? Most people see tons of clueless doctors before getting diagnosed. And even after that it can still be a struggle. My husband died from complications of Lupus. The biggest one being 10 of his 11 prescriptions are now known to be bad for the heart. Almost all of his specialist were clueless about Lupus and autoimmune disease in general, but they were all super adamant that the Lupus wasn't the cause of his various issues or his death. Even though they didn't really have any other answers. Complete stupidity and arrogance. I could have clocked the heart surgeon who told me that Lupus had no impact on my husband's death. This was nearly 20 years ago, I hope it's gotten better over time, but I doubt it's improved much. So yes a clinic with specialists all in one place and up-to-date on autoimmune conditions would help since Lupus can attack any system in the body, but the specialist seem to be clueless about this fact.
Praying for this. It's debilitating. It's a struggle to just survive the day. So much pain, no energy and loss of body functions. It's crippling. Need a test subject? I will gladly volunteer.
Dr. Goldener here on RU-vid What's her lucas into remission with her diet protocol. Almost every doctor knows that lupus is triggered by a dietary excess of processed food. Water fasting and cutting out all processed foods does wonders to heal the body of disease. But big pharma doesn't make billions of dollars off of that, so it's never studied. No, they want develop a pill that you'll have to take the rest of your life. And suffer all the side effects. So then you have to take other pills for the side effects.
How absolutely HUGE! Just being able to find a recignized blood draw marker for diagnosis would be huge. Being able to honestly address the disease or condition is super huge.
This is the title of the actual study: "Interferon subverts an AHR-JUN axis to promote CXCL13+ T cells in lupus" Its very specific, but good luck understanding it.
I have Mixed connective tissue disease, of which is lupus combined with 2 other autoimmune diseases. I began taking a very high dose of vitamin D3 with vitamin K2(K2 must be taken with D3 to prevent calcification in soft tissues/puts calcium into the bones) I had a holistic doctor who told me that D3 normalizes the immune system. Long story short, I haven't needed medication for my disease for the last 3 years. Before this, i tried so many things. Healthy eating, and getting enough sleep is also very important, and avoiding stress,(easier said than done!)do everything you can to remain healthy.
@@massiahgrom I'm so sorry you're suffering, it's horribly painful, especially because it's chronic severe pain. I've had it since I was 22, and none of the doctors I sought help from took me seriously, so I didn't get diagnosed till I was 55, so I have much irreversible damage with resulting pain, but the vitamin D3 took away my inflammation. I feel better on that than when I was taking hydroxychloroquine. I'm 63 now.
@@renalielabarda553 I usually just used Spring Valley(walmart brand), and I take Mk7 form of K2, it's better), I also use Spring Valley, before that, I purchased Andrew Lessman. Basically what I can afford, and from what I have heard, Spring Valley is good, I was kind of skeptical, but supplements are so EXPENSIVE.😳 I also knew my vitamin D levels were extremely low, my doctor tested them, before the pandemic. And I take 100 MCGS of K2 for every 10,000 IUs, of D3. Due to leaky gut, and other issues, many people are low on D3. I think it's always best to do your research thoroughly, though before trying anything, making sure that that the supplements are safe for you, won't worsen certain health conditions or interact with any medications you may be using. But I just had to share what it did for me, I am still amazed and really grateful. Good health to you!💙
The most encouraging thing he said was that they think they found targeted access to interrupt the process of lupus "very far upstream". A lot of medicines that don't work in autoimmune intervention affect mainly the downstream symptoms. If he was using that term literally then there is hope that medicine now has a deeper understanding of the lupus disease process, to even know what/where upstream is and how to disrupt it
He didn't say anything about the study, what actually causes lupus and how it can be reversed. He just gave cryptic answers that he thought sounded good but didn't really reveal anything or make real sense.
He did though? He said they identified a chemical imbalance that causes changes to cells that lead to antibodies that attack patients' tissues, which is one potential cause of lupus. The study has the potential to lead to the development of therapies, which while isn't defined, can reasonably be inferred to mean medicine or gene therapies. If you want more info, you can probably just google his name and find either the study abstract for free or an article aimed at an audience with a stronger scientific background that may go into more detail
First the cure---you can spend ages looking for causes when you could be exploring treatments---some, actually many causes are so elusive we may never find them. But LOTS of good info here that could lead quickly to some relief for sufferers.
I have a different disease that's in the same category as lupus (autoimmune disorders), and in my opinion, they're caused by chronic inflammation and the body attacking its own tissues. We just have to figure out what. In my case, it was a food (gluten), so it was pretty easy to treat. I've also noticed a pattern of severe stress triggering autoimmune disorders, too. I don't know if we can cure them, but we can definitely treat them.
@@Hollyucinogen It's never just one source, which is why it's hard to pin things down. The best saying I have heard, is that Genetics is the gun, and the environment pulls the trigger. So if you have the genes for you autoimmune disorder, just about anything could trigger it. It could be a virus (most likely in MS and Lupus) or another autoimmune disease that you have (If you have one, the chances vastly increase that you will have another). Inflammation is a symptom. Unfortunately finding what causes autoimmune diseases in full is very, very difficult, and I would caution you about guessing.
I have Paget’s of the bone & fibro. It’s nice to see fibro being acknowledged these days. My Dr told me I was a hysterical female who needed a husband when I was trying to get diagnosed in the ‘90s. Hope they move forward w/ autoimmune diseases in a promising way. Instead of the garbage we’ve all been getting for these past yrs…
They found a chemical imbalance that causes the activation of the immune cells that causes lupus.. they can turn the response off.. halting the disease
@@carladavis1473 respectfully, do you know everything that contains gluten? In addition to that you have to work on systemic inflammation and likely a leaky gut. You should have also been, on at least an omega 3 and collagen.
Must be something they are eating. Maybe their food contains too much round up or chemicals that cause those imbalances. Even cleaning products can cause those issues which is more likely the issues since women clean in most households.
Genetic predisposition and imbalanced emotional responses to trauma and stress. If something goes out of balance in our body, everything goes out of balance. Of course blood will be chemically imbalanced, I guess they just figured out exactly which protein is messed up.
If you have an autoimmune disease, it's an immune system issue. Higher doses of vit. D3 NOT D2! (40,000-50,000 IU must take with 100 mcg k2 per 10,000 IU vit D, so 400-500mcg k2) Vitamin D modulates the immune system bringing it into balance. It's also anti-inflammatory. Magnesium is important as well to make the D3/k2 work. Also, eliminate gluten and anything causing leaky gut. Autoimmune issues always arise after leaky gut is present. Watch Dr. Berg on RU-vid. He has videos on autoimmune/leaky gut. A drug isn't going to do what vitamin D does. Instead, they are more likely to block the bodies natural function which makes symptoms less however may not correct the problem. Good luck to anyone suffering.💓
Yes.. we really get no help. It attacked my eyes and possibly my heart. 2 thyroid crashes, have changed meds 3 times, can be so hard to regulate. Only upside I didn't get Covid. We are small fish. 🇨🇦
I had lupus. I lost kidney function and was on dialysis for 10 years until I received a kidney transplant. I no longer have lupus because I changed my diet from highly processed foods to whole food, and I stopped eating gluten or wheat products. Not from help from meds or doctors but with prayer, nutrition, and action.❤
Love this for you! Not sure why more people don’t try Whole food plant based diets more often for health issues. It worked for me about 10 years ago, and I never looked back.
…. You’re also taking immunosuppressants due to the transplant. Lupus is an autoimmune disease so lowering the immune system would also lower the immune response causing the lupus. I mean, good for you switching to a better diet though. That lowers your cancer risk by a ton actually.
thank you for posting this..... makes you wonder if folks with kidney functioning issues should be on very specific diets. But, like the psych community, all the doc says is, "you should eat better," yet they know nothing about the human biome and it's relationship to inflammation, hormones and neurotransmitters.....
lupus has been around for centuries, unlike those chemicals. Turns out that people with hyperactive immune systems which tend to attack us also tend to be resistant against the bubonic plague so something that's disadvantageous in certain circumstances as advantageous in others. Meaning we survive some pretty nasty plagues, but then the rest of the time we have an immune system that can act up when it shouldn't .
Their has been countless videos of scientist finding new promising cure for cancer that works in the lab but we never hear about it again. For diabetes their has been success in curing type 2 diabetes, look up the study conducted in China with diabetes. It’s going through human trials right now, already cured 1 patient so far.
This is potentially HUGE for many autoimmune diseases including Psoriasis and Psoriatic Arthritis like I and many others have. Thank you to these scientists for focusing on this since its affects mostly women and research is always lacking in that healthcare bracket. 🙏🙏🙏 I look forward to more developments 👏👏
In my recent diagnostic journey lupus was considered because of shared symptoms with multiple sclerosis. Because of that, i feel a weird kinship with people dealing with lupus, and I am so excited and hopeful for them !!!! ❤
"Lupus?! Is it Lupus??" --George Costanza Sorry, this comes to mind whenever i hear the word Lupus. But the FIRST thing that comes to mind is what a terrible disease it is and I really hope they find a cure and I'm praying for all those suffering from that nasty disease. God bless❤❤❤
Chemical imbalance in the blood causing antibodies (autoimmune or self-attack). Meaning they now have blood biomarkers and found a way to target the cause "upstream" meaning at or near the root cause, and not just treating the symptoms.
Of course it involves a profitable "therapy." Says nothing about the cause. "Chemical imbalance." Treat the cause, don't create more profit for the profiteers.
He said the cause, just didn't explain in detail because viewers don't understand anyway. They found that interferon and AHR/JUN are like two opposing controllers that determine the abundance of the immune cells that, when they are too plentiful, cause lupus. Interferon makes the cells more abundant, and AHR reduces the number of cells, so the idea is to treat lupus with drugs that target one or both of these controllers in the hopes of correcting the imbalance.
and let others ride on the back of their research? I don't think so, especially when a pharmaceutical company is involved. They'll want to patent it before they give out any details.
But what is causing the blood issue to begin with? This still isn't a cause. My first husband died from complications of Lupus. He was only 36. Really the medications killed him. 10 of the 11 prescriptions he was on turned out to be bad for the heart. And so is Lupus and dialysis, so poor guy didn't stand a chance. Had all kinds of crazy symptoms, including kidney failure, but died unexpectedly of a heart attack. I really hope this turns out to be a good discovery and treatment, but not holding my breath. Prescriptions are rarely cures unless it's an infectious disease. And they are a leading cause of death in the US and adverse reactions are rarely reported.
🙋♀️I've had Lupus for over 34 year. Such exciting news. I've had it affect my kidney, my thyroid, brain, skin. I'm now 66. Diet and Lifestyle is a big factor.
Oh yay! This disease is targetable by drugs… just what we need. Did we find a common denominator in the patients environment, history etc? We learned nothing of what causes the chemical imbalance only what they THINK will fix it.
It's a start. If they are correct then we can possibly work backwards to the primary cause. But in the meantime this treatment could offer help to many people.
I developed an infection after an emergency c section. I ended up with sepsis. Almost didn't make it. Then I was overdosed with Vancomycin. My kidneys started shutting down. Again, almost died. Ever since I have never been fully recovered and ended up with Lupus. This could be life changing. It's a good thing.
Maybe we can go back and uncover the actual cause of all these auto immune disorders. WHY would our immune systems be so underwhelmed, so bored, and so confused that it attacks any part of our bodies? 🤔
Good question, I mean the immune system evolved in humans when we lived mostly outdoors, were nomadic, hunters and gatherers. The immune system would have been very active, trying to ward off problems from injury, illnesses for which we didn’t have vaccines. I wonder if our in front of screens lifestyle is causing the immune system to be bored, looking for something to fight. Or, have humans always had autominnune disorders. Not sure how we could find out.
For all those suffering with lupus, (and certain other autoimmune diseases) you may be able to get some (or even total) relief before this study is completed. Research the autoimmune elimination diet. There are many sources explaining it and it is referred to by varying names. My sister has lupus, and has been symptom free for several years now by eliminating gluten and dairy. And possibly corn and soy, but I don’t remember positively. The first two are common foods that cause a host of issues for many people. I certainly hope for a reversal for those suffering, but in the meantime, this is within reach of most people, so is worth a try!
Many, are sensitive to other things than corn or soy. Should see a doc who can test you somehow. But diet can help if targeted so you don’t lose other essential nutrients trying to avoid the wrong things.
In other words metabolic imbalance syndrome if it’s true the FDA and NIH will make sure pharm has full share on this information from. The hands of citizens.
Lupus has been intent on killing me for the last 7 years of a 25 year diagnosis. How long until we can use new understanding in patients? If it attacks my blood vessels again I may not make it.
Them: “we found the cause of lupus! We found a chemical imbalance that causes the cells to change and causes antibody related issues!” Everyone: “But what’s the cause of the chemical imbalance??! What’s the actual cause of Lupus itself?!” Arguably, the chemical imbalance and it’s cascading effects, is a SYMPTOM of lupus…..meaning the cause of lupus is still unknown….
what caused the imbalance? lupus and sarcoidosis have always been presented as a "we dont really know" condition. so if chemical imbalances are triggering flare ups... does the study dive deeper into the imbalances?
I wonder if they know A LOT MORE than they claim due to the Human Genome Project and they know the genes/chromosomes that cause it but don't acknowledge this publically!
@@Jasmine215100 that's not a secret project and if they made a discovery they would publish the findings. lupus has never been identified as a genetic or chromosomal condition.. to my knowledge no autoimmune condition has been identified that way.
i have self treated lupus by management of gut microbiome duhhhh and histamines lets see if the medical scientists can now figure out how to connect the processes but they are not built for connecting knowledge my phd in medical anthropology helped me figure this all out. of course our microbiome regulates blood and potential imbalances yawn we need more and better research for these post viral conditions
I know this isnt the same disease but somewhat close to it but i hope they can also find a cure for Psoriasis, it comes and goes in cycles but never goes away but i put my faith in God that a cure can also be found for it aswell, inshaAllah.
SA, have you tried anti inflammatory diet? Please try this for psoriasis, along with good sleep hygiene, test your blood for vitamin deficiencies, lower stress and even do allergy tests. May Allah swt grant you shifa
@@gardeniagorgeous4232 Wa alaykum assalam, Ameen! I've been struggling with this since my teenage years im in my late 20's now and it really affected my daily life, but always kept faith in Allah and He granted me patience to deal with it, as for treatments i have tried topical creams but thats about it, i try to stress less since i believe it was the main trigger but i find myself stressing again every now and then which doesnt help. As for my sleep it is literally upside down since i work at night but i get the minimum 7 hours at least, i try to sunbathe during the day but i cant do it for too long since i gotta sleep, but im pretty sure im low on vitamine D. As for my diet i always tried to eat healthy but never really followed one but subhanAllah this is the second time this week someone recommended an anti inflammatory diet so i'll take that as a sign from Allah and follow it inshaAllah, i really appreciate your advice jazakAllahu khayran! Please keep me in your du'as!
@@gardeniagorgeous4232 I just replied to you buy looks like it got deleted for some reason, but yeah i really appreciate your advice and will give an anti inflammatory diet a try! My sleep doesnt help since i work during the night but i get the recommended 7 hours minimum and try to sunbathe during the day, and yeah stress doesnt help and i believe was the main trigger in my case but Allah knows best! JazakAllahu khayran and please keep me in your dua!
Gut health. Healthy gut, healthy skin. Had really severe debilitating eczema, treating leaky gut is what cured that, and also the acne, brain fog, fatigue, etc etc
For people suffering with Lupus, please check out Dr. Brooke Gardner's work. She uses a nutritional approach that has helped many. She shares the details for free on her website and RU-vid videos about how she manages her own lupus.
I'm honestly not sure what the new science is here because it seems to be what I have read for a while now, but I'm glad they are going to be doing new therapies.
It used to be called the Dr. Kildare syndrome---that was one of the first medical shows in the60's & doctors swore that whatever the disease of the week, they'd get a whole horde of people coming in with those symptoms. Humans are very suggestible---& sometimes very desperate.
As someone who holds my lupus in remission by making extremely healthy choices, this gives me hope but also gives me pause. I’m skeptical they’ll be able to turn it off.. and keep it off.. unless it’s a lifetime drug or unless it’s combined with a low-tox, careful lifestyle. I don’t know why that is never a part of the conversation in formal medical settings, only alternative medicine.
I hope there is a solution and I hope it is adorable. It’s awful that with all the money we raise to find a cure for something when the cure comes out those same people are priced out of the help they need.
It always seems to me that when a possible "Cure" is mentioned, someone pays these people to keep it off the market! The Money's in the MEDICINE, not the CURE!
@Jasmine215100 - Well said!! 💯💯 They have no financial incentive to actually CURE anything, they will create a drug that just barely suppresses the reactions, and tell patients they have to be on those meds for LIFE, that's how they make money. Curing won't make them any money!
How have you been able to determine that the chemical imbalance is a cause of lupus rather than a result of lupus? I would love more details. Correlation is not causation. It's the same issue as amyloid plaques in dementia. Treatments targeting those plaques have held up research for decades and wasted billions.
I look forward to reading his study and finding out more. I hope now that they found blood biomarkers, patients will stop being gaslit, and psychopathologized over "past trauma causing autoimmune disease" when more likely, it was an infection, including asymptomatic ones, that triggered the pathphysiological changes in the immune system. Viruses can cause autoimmune disease.
Yes let's talk about absolutely nothing and not mention anything that say what they have started on. This was the most pointless interview I have have ever seen