Our mission at Kaleidoscope Fighting Lupus is to EDUCATE the public and to INFORM the medical community about lupus, to ADVOCATE for earlier life-saving diagnosis, to SUPPORT people living with lupus and to COLLABORATE with government and foundations to fund research toward a cure.
Miranda is a walking encyclopedia of physiology. Part of what I enjoy about doing her Classical Stretch workouts is to hear her explain how the body works when it moves. I get to move along with Miranda and attend anatomy class at the same time! 😆
Great talk! How did the anti-SSA antibody patient on cd19 CART benefit from therapy, if they did not have reduction in anti-SSA antibodies? (28min mark)
@lighto999 the immune system is in lupus is much more complicated than one particular antibody. Although anti-SSA can actually lead to inflammation (like insensitivity and fetal heart block), its presence may just be a marker of activity and not necessarily active damage or inflammation. The patient was in drug-free remission the entire time after treatment. However, the question is ... will this person's SLE be more apt to return than in someone whose antibodies all disappear? I suspect it will come back, but we will have to wait and see.
Hi, Great video. Does Dr. Donald have an opinion on CD19 antibodies or CD19 T-cell engagers? I know CD19 CAR-T has most data, but may be restrictive to patients. thx!
My main fear is that B-cell depletors (like anti-CD 19 and anti-CD 20) have led to horrible vaccine response rates and increased deaths from COVID (even recently one of my rituximab patients died of the most recent strain). CD-19 CAR-T patients still respond to vaccines. You are correct, it will not be one size its all. We need to figure out who will respond best to which cellular targets. I foresee this field really exploding quickly over the next few years with more and broader research.
CAR-T programmed cells attach to and kill only cells for which they recognize . More mature B-cells have CD-19 molecules on their surface so they are all destroyed. However, the most immature cells in the bone marrow that can become mature B-cells are still present and they reproduce, repopulating the body with important B-cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it "resetting the immune system." However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells, so we have a lot to learn. Also, could the immature cells that do not contain CD-19, could they become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time.
HI, we asked this question of Dr. Thomas and here is his answer. "The CART T programmed cells attach to and kill only the cells for which they are designed to recognize - the more mature B cells that have CD-19 molecules on their surface. So they are all destroyed. However, the most immature cells in the bone marrow that can become mature B cells later are still present and they reproduce, repopulating the body with important B cells to fight off infections. However, so far, they are not producing bad lupus antibodies like anti-dsDNA. That is why the scientists call it 'resetting the immune system.' However, cells producing anti-SSA are still alive, probably the most mature B-cells called plasma cells [which are not all killed off]. So we have a lot to learn. Also, could the immature cells that do not contain CD-19 become abnormal again, producing bad lupus antibodies? Only time will tell as we follow these patients over time." Thanks for asking this question!
Hi, cancer treatments are still the most common use of CAR T cell therapies, but there is some research for RA. You can find out more from the NIH here (scroll down the page): www.ncbi.nlm.nih.gov/pmc/articles/PMC10328598/ We hope this helps! The KFL Team
There is also a study in RA patients that did well. At the moment, the number of studies and treated patients is really growing... it is an exciting time for possibly better therapies for autoimmune disorders
Since the video taping (as of April 2024), additional data have been published, and at least 43 SLE patients have been reported treated with CAR-T cell therapy. Almost all developed mild, easy-to-treat cytokine release syndrome (most common symptom was fever). Therefore, Dr. Thomas retracts his statement in the video regarding Novartis' CAR-T therapy. Thus far, their results appear to have similar safety and efficacy as other products). Updated report can be seen here: www.lupusencyclopedia.com/car-t-cell-therapy-for-lupus/
Having lupus and fibromyalgia since I was diagnose at 34 years. I'm 59 years and I'm a level 4 Essentrics Instructor now. I enjoyed your interview with Miranda Esmonde- White explaining Essentrics and how to get out of pain, improve your mobility and a stress relief program helping with Lupus, fibromyalgia, and other conditions. This helped me in a short time but moving slowly, slower pace and gentle exercises. I did stopped all my weight programs and only concentrated on the Essentrics program then I was able to return back to my other activities etc weights and biking . Thanks to Miranda Esmonde-White and Essentrics.
All thanks to Dr.Auchi who I met on RU-vid channel. He cure me from Sle Lupus disease with his herbal remedies, I recommend Dr.Auchi on RU-vid channel to everyone suffering from Sle Lupus disease 🦠..ru-vid.com/show-UC6tA16t1IlKx1bY93lc2rcg ✅✅✅🙏🙏
Put a thumb up before even watching this interview. Have been doing Essentrix workouts for a while now and simply put.....could not do without them !!! Mirranda, thank you from a deepest place of my heart for your wonderful workouts and the kindness and the way you present your teachings.
I’m newly diagnosed and this is by far the best information I have come across. It gave me a better understanding of what to expect. Thank you for posting.
I feel the same way! In some circles, this is called "disuse syndrome" and though it isn't fully understood, it has a bit to do with several of our body systems - sometimes in different parts of the body that seem unrelated. Muscles slightly atrophy with lack of use, our oxygen levels in parts of the body decreases if we don't work our heart, lungs and blood vessels more ... and sometimes our emotional state when inactive can make us feel pain differently. At least there are plenty of resources out there with yoga and other activities that may be of help. We hope you get to feeling better! Thanks for leaving your comment!
