News Archive
News Archive
(Note: Newest articles are on top)
Understanding the Therapeutic Potential of Nipocalimab (Neurology Live)
COVID-19’s Link to Myasthenia Gravis: New Research Insights (Glogal Autoimmune Institute)
It Had to Happen: CAR T-Cell Therapy for Autoimmune Disease Comes With Side Effects (Medpage Today) Something to keep an eye on, especially if you're considering entering a CAR-T clinical study for MG.
Dianthus Therapeutics Completes Enrollment of Phase 2 MaGic Trial of DNTH103 in Generalized Myasthenia Gravis With Top-Line Results Expected in September (Global Newswire) "DNTH103 is an investigational, clinical-stage, potent monoclonal antibody engineered to selectively target the classical pathway by inhibiting only the active form of the C1s protein..."
Vyvgart outperforms standard treatment in real-world study (Myasthenia Gravis News)
🔥 🔥 🔥 BREAKING 🔥 🔥 🔥
FDA Approves FcRn Blocker Nipocalimab for Broad Forms of Generalized Myasthenia Gravis (Neurology Live)
From the article: "Key Takeaways:
Nipocalimab, an FcRn blocker, is approved for gMG in patients 12+ with anti-AChR or anti-MuSK antibodies.
The VIVACITY-MG3 study showed significant improvements in MG-ADL and QMG scores with nipocalimab.
Nipocalimab is the second FcRn blocker for gMG, following rozanolixizumab, and offers broad patient applicability.
IMAAVY withMe program supports patient access, aiming for minimal cost per infusion.
Common adverse events include respiratory infections, peripheral edema, and muscle spasms.
Myasthenia Gravis Association presents:
A guest speaker from MDA (Muscular Dystrophy Association), who has extensive experience with Medicaid, reviews the current state of Federal budget funding proposals currently being considered by Congress. Significant reductions in Medicaid's budget (which determines the financial assistance Medicaid provides to millions of beneficiaries including much of the MG population) are being proposed. We highly recommend that all Medicaid recipients watch this presentation.
Mortality Risk in Patients with Myasthenia Gravis (Frontiers in Neurology) "...our study suggests, by using reliable disease age- and sex-matched control groups, higher mortality in MG patients compared to disease controls, especially in the first 5 years of the disease... Our data also showed that mortality has not significantly changed since the beginning of the century, despite treatment progress, and the COVID pandemic...."
Telitacicept found to reduce gMG severity in Phase 3 trial in China (Myasthenia Gravis News)
🔥🔥 Real-World Data Reveal Concern of Infections in Efgartigimod for Myasthenia Gravis (Neurology Live) This is important information for anyone taking Vyvgart/V. Hytrulo or considering it.
From the article:
"Key Takeaways:
Efgartigimod treatment in myasthenia gravis patients showed a higher infection rate compared to immunoglobulins, with 37% of reports involving infections.
Serious infections and hospitalizations were more likely with efgartigimod than with immunoglobulins, highlighting a significant safety concern.
Efgartigimod has received multiple FDA approvals since 2021, expanding its use to conditions like primary immune thrombocytopenia and chronic inflammatory demyelinating polyneuropathy.
Clinical trials reported a high incidence of treatment-emergent adverse events, but no fatal outcomes were directly attributed to efgartigimod."
Here's an article from MGA. It's from the new Muscle Makers group and highlights one of our SoCal Group members, Susan Brinskelle! Link: https://mgadigest.wixsite.com/mgakc/post/art-resilience-celebrating-the-talents-of-muscle-makers (MGA Digest)
She's the third one down.
How accurate are the cell assay tests for anti‐AChR/MuSK when trying to diagnose MG? You might be surprised. (ResearchGate)
BIODIGIT MD
Product website: BioDigit MG Solution by BioSensics
Article about this new MG monitor: MDA 2025: Digital monitoring tool for myasthenia gravis found feasible (Myasthenia Gravis News)
Inebilizumab eases gMG symptoms in anti-AChR antibody patients (Myasthenia Gravis News)
Who Will Volunteer for Clinical Trials Now? (MedPage Today) Important information for MG patients
Myasthenic crisis tied to high lactic acid levels after thymectomy (Myasthenia Gravis News)
🔥 FDA agrees on design of Phase 3 trial to test Descartes-08 in MG (Myasthenia Gravis News) This is a highly anticipated drug treatment from Cartesian Therapeutics.
Navigating myasthenia gravis with mindfulness and hope (Myasthenia Gravis News) Moving video of Cindy Streltzov who shares the practices that bring her balance amid MG’s unpredictability.
Favorable outcomes seen for very late-onset myasthenia gravis: Study (Myasthenia Gravis News)
Here is the original research article.
I'm 71 and got MG at 66, so this might explain why I'm now in remission! (Mike Stabile)
Nipocalimab granted U.S. FDA Priority Review for the treatment of generalized myasthenia gravis (J&J.com) "Results demonstrate sustained disease control over 24 weeks in a broad population of antibody positive adult patients: anti-AChR, anti-MuSK, anti-LRP4"
Potential Myasthenia Gravis Treatment Receives FDA Priority Review (Practical Neurology)
Use of cyclophosphamide regimen found effective in hard-to-treat MG (Myasthenia Gravis News)
Durable reductions in MG severity seen with Descartes-08 cell therapy (Myasthenia Gravis News)
IVIG agent safe, may be effective as maintenance therapy for gMG (myasthenia Gravis News)
Bacterial enzyme may be potent treatment for myasthenia gravis (Myasthenia Gravis News) "CU43 found to work better than Vyvgart to disable self-reactive antibodies"
Ultomiris, over months, helped majority of patients in Phase 3 trial (Myasthenia Gravis News)
10 Serious Side Effects of Turmeric (VeryWell Health) If you take Turmeric supplements, like I do, this information might be of value to you. (Mike Stabile, webmaster)
Evaluate the Safety, Tolerability, Pharmacodynamics and Efficacy of CNP-106 in Subjects With Myasthenia Gravis (NIH) This new clinical trial by COUR Pharmaceuticals will attempt to reprogram the immune system to eliminate Myasthenia Gravis symptoms. Here you can find just about all the information you need, including Study Overview, Participation Criteria, Study Locations (including contact information), and the Study Plan. Of the 13 trial sites, there currently are two locations in Southern California that are actively recruiting study participants.
🔥🔥The intricate dance of non-coding RNAs in myasthenia gravis pathogenesis and treatment (NIH) An extensive review of the direction and future of MG research. Key takeaways: "...This comprehensive review consolidates the landscape of dysregulated ncRNAs in MG, briefly delineating their pivotal role in MG pathogenesis. Furthermore, it explores their promise as prospective biomarkers, aiding in the elucidation of disease subtypes, assessment of disease severity, monitoring therapeutic responses, and as novel therapeutic targets." ALSO: "...It follows that ncRNAs may not only influence the production of specific antibodies, but also take part in the stabilization of postsynaptic membrane, the regulation of complement, and the regeneration of muscle."
Study shows Soliris to be more effective that Vyvgart in MG (Myasthenia Gravis News)
Say Goodbye to CPAP Machines: Epilepsy Drug Shows Promise for Obstructive Sleep Apnea (SciTechDaily) CPAP is a common therapy used by many MGers
Nipocalimab up for approval for gMG in the US (Myasthenia Gravis News) This new drug is in the same drug class (FcRn blockers) as MG drugs Vyvgart and Rystiggo. If approved by the FDA, it will cover a wider range of types of MG compared to the latter two.
🔥🔥The new Covid vaccine will be released immediately after Labor Day. This is important news for all of us on various immunosuppressive meds (e.g., Prednisone, etc.) if not all the rest of us. Considering we're in the middle of a Covid surge, it's even more important now
What viruses are going around right now? (AMA) Great, current (as of August, 2024) update of the most dangerous circulating viruses. Info is intended for physicians, but it's very readable.
Vitamin C is a very important component for our immune system, especially in MG. This Disease Is Wreaking Havoc on Citrus Fruit – And It's Spreading Worldwide.
Visualization and characterization of complement activation in acetylcholine receptor antibody seropositive myasthenia gravis (Wiley) "...promising biomarkers for further validation in MG in assessing complement activation"
Scientists ID potential biomarkers to help in MG diagnosis (Myasthenia Gravis News) "Set of inflammatory molecules also could prove useful for classifying MG"
Systemic Inflammatory Response Index, a Potential Inflammatory Biomarker in Disease Severity of Myasthenia Gravis (NIH) "...SIRI may be a reliable and effective biomarker in MG"
Analysis Supports Use of Newer PRO Scale in Myasthenia Gravis Trials (AJMC) "MG Symptoms PRO scales is a viable measurement of core symptoms of the disease among patients receiving treatments in clinical trials." “The reliability of the new ocular muscle weakness and respiratory muscle weakness scores, which included additional items compared to the versions previously reported, were improved, confirming the appropriateness of adding these items to create better measures.”
Couples say they can't get married because of this government program's outdated rules (NPR) If you have MG and receive benefits from Supplemental Security Income (SSI) and are considering marriage, this is probably something you'll want to know.
IL-41 may be potential biomarker as levels correlate with MG severity (Myasthenia Gravis News)
Reliability and Validity of Cough Peak Flow Measurements in Myasthenia Gravis (ND) From the paper: "This study validated the reliability and validity of CPF measurements in assessing voluntary cough in patients with MG."
OMGMed: Advanced System for Ocular Myasthenia Gravis Diagnosis via Eye Image Segmentation (B) A potentially new computerized system to automate the diagnosis of Ocular Myastheia Gravis
Therapeutic Plasma Exchange in AChR-Ab Positive Generalized Myasthenia Gravis: A Real World Study About Its Early Response (JIR) Determination of how plasma exchange for MG can be more effective
Sugar substitute xylitol linked to higher risk of heart attack, stroke (Medical News Today) This breaking news is important for everyone, not just MGers.
Find & compare Medicare providers near you (Medicare.gov) "Trying to find a hospital nearby with doctors that accept Medicare? Or, perhaps you're planning to have surgery or are thinking about your future needs?" This site will help you compare hospitals in your area.
More unofficial reports of shortages of Mestinon 180 SR (aka pyridostigmine 180 SR). (See my post in Announcements Archive.)
Immunovant positions IMVT-1402 as lead MG treatment candidate (Myasthenia Gravis News)
KEY MECHANISM UNCOVERED IN GUT BACTERIA COULD HELP SOLVE CONSTIPATION (Inverse) Help that we could all use.
🔥 BREAKING NEWS 🔥
CAR T-cell therapy Descartes-08 receives RMAT status from FDA (Myasthenia Gravis News) For those of us following the latest developments in MG research, this is exciting news about getting closer to a symptom-free MG treatment and an avenue to a possible future cure. The article also has a great, easy-to-understand explanation of how this therapy, which is RNA-based, is superior to the DNA-based therapies currently under development for cancer.
MG treatment side effects common, especially in women (Myasthenia Gravis News) This article summarizes the results of a survey comparing the frequency of side effects of three steroid-sparing agents used to treat MG: mycophenolate mofetil (CellCept), methotrexate (Trexall, among others), and azathioprine (Imuran, among others). If you and your doctor are considering one of these for your MG therapy, and maybe for replacing prednisone, then these results might help you in your decision-making process. The survey results are detailed in this journal article (Neuromuscular Disorders).
Soliris benefits maintained after patients switch to Ultomiris (Myasthenia Gravis News)
Acid from gut bacteria may become potential treatments for MG: Study (Myasthenia Gravis News) Is this (butyric acid) a new treatment for reducing MG symptoms? Does this possibly explain how good nutrition can reduce MG symptoms? Maybe!
Functional Signature of LRP4 Antibodies in Myasthenia Gravis (Neuroimmunology and Neuroinflammation) From the article: "Although the clinical efficacy of complement inhibition is evident for AChR-Ab+ MG, its clinical benefit in in LRP4-Ab+ or LRP4-Ab+/AChR-Ab+ remains to be demonstrated. If it is not, then biologics targeting features of Ab pathogenicity other than complement activation could be more effective to improve clinical outcomes for patients with LRP4-Ab+ MG."
Utilization of Decision Tree Algorithms for Supporting the Prediction of Intensive Care Unit Admission of Myasthenia Gravis: A Machine Learning-Based Approach (ResearchGate) Excerpt: "This study uses an ML-based decision tree approach to predict ICU admission in patients with MG. Decision tree methods are promising tools that can build a predictive model of ICU admission in patients with MG, and they can provide physicians with information to evaluate the potential risk of ICU admission in patients with MG."
Zilucoplan Shows Favorable Safety, Tolerability, and Efficacy in MG Trial Extension (Rare Disease Advisor)
The impact of myasthenia gravis severity on work and daily activities (Muscle and Nerve) Excerpt: "Patients with MG experience substantial work impairment particularly those with more severe symptoms, highlighting an important way in which patient quality of life is negatively affected. More effective treatment strategies would enable patients to lead more productive lives and could impact decisions relating to work and career."
Azathioprine, MMF effective, but more studies needed: PROMISE-MG (Myasthenia Gravis News)
CDC: Latest COVID Vax Cuts Hospitalization Risk in Immunocompromised People (MedPage Today) "— But fewer than one in five of this vulnerable group have received the updated shot."
Fatigue and Fluctuating Symptoms in MG (NeurologyLive) A panel of preeminent Neurologists discuss fatigue and symptoms in MG. Two short video excerpts.
Expert consensus recommendations for improving and standardising the assessment of patients with generalised myasthenia gravis - Is it time to finally update the MG-ADL assessment? (I think so. For one thing, I think it needs to add "Fatigue Level" as a category.)
Measles is a Thing Again
CDC Issues Health Alert Amid Rising Measles Cases, Urges Vaccination
Hundreds Exposed To Measles In CA Amid Global Uptick: Health Advisory
MGers on high levels of immunosuppressants should talk to their MG doctor before deciding to get a measles vaccine, because it has live viruses.
Benefits of Zilbrysq sustained over 1 year in gMG study (Myasthenia Gravis News)
Vyvgart Hytrulo eases disease severity, boosts life quality (Myasthenia Gravis News)
Californians: There's been a huge change to the Med-Cal program for older adults and people with disabilities. This change happened on January 1st, 2024. Watch this video presentation to learn more about these changes and how to enroll in Medi-Cal. The good stuff starts at 14:40.
Also, here's an L.A. Times article from February that dives into many of the Medi-Cal changes that might benefit you.
Switching from plasma exchange to Vyvgart well tolerated, effective (Myasthenia Gravis News)
New cell therapy improves physical function in refractory MG (Myasthenia Gravis News)
Dianthus launches Phase 2 trial to test DNTH103 in generalized MG (Myasthenia Gravis News)
Vyvgart has brought $1.2B to Argenx in gMG revenue in 2023 (Argenx) NOTE: LINK BROKEN
Why women have more autoimmune diseases than men (NIH) also: Understanding sex differences in autoimmune disease (NIH) also: What Are Autoimmune Diseases? (Verywell Health)
Identifying patients at risk for myasthenic crisis (mc) with hemogram and inflammation-related laboratory parameters – a pilot study - " increased counts of basophils, neutrophils, leukocytes, and platelets may be associated with a higher risk of developing MC in patients with MG" (Frontiers in Neurology)
Triamcinolone injections around the eyeballs seen to ease ocular MG (Myasthenia Gravis News)
High levels of immune protein linked to MG severity, relapse risk (Myasthenia Gravis News)
Nipocalimab eases disease severity in adults with gMG: Phase 3 trial (Myasthenia Gravis News)
Sustained gains with long-term Vyvgart use seen in ADAPT+ trial (Myasthenia Gravis News)
IVMP and Tacrolimus Both Show Promise in Ocular MG (Rare Disease Advisor)
MG flares affect sizable number of patients in US, despite treatment (Myasthenia Gravis News)
"A highly mutated version of the COVID-19 virus called JN.1 is currently driving a surge of infections in the United States. The extremely transmissible variant now accounts for about 86 percent of COVID cases — a major jump from Thanksgiving, when fewer than 8 percent of infections were caused by JN.1." Read the complete article HERE.
Serum fibrinogen may be a universal biomarker for MG (Myasthenia Gravis News) Maybe another tool for diagnosing MG.
The US is experiencing the second largest COVID-19 wave since the start of the pandemic. It's not too late to get re-vaccinated.
Place Your Order for Free At-Home COVID-19 Tests
As of November 20, 2023, residential households in the U.S. are eligible for another order of 4 free at-home tests from USPS.com. Here's what you need to know about your order: Each order includes 4 individual rapid antigen COVID-19 tests (COVIDTests.gov has more details about at-home tests, including extended shelf life and updated expiration dates). If an order has not been placed for your address since the program reopened on September 25, 2023, you can place 2 orders now. Orders will ship free starting the week of November 27, 2023. Place your order here: https://special.usps.com/testkits. NOTE: THE FEDERAL GOVERNMENT HAS STOPPED THIS PROGRAM
Descartes-08 shown to reduce gMG disease severity up to 1 year in trial (Myasthenia Gravis News) Here is Cartesian Therapeutics' Press Release.
Zilbrysq for AChR-positive gMG now commercially available in US (Myasthenia Gravis News)
Some possibly good news for MuSK-MG patients. Keep an eye on this evolving study.
New generic version of Mestinon as oral syrup available in U.S. (myasthenia-gravis.com)
Vyvgart safe, effective in hard-to-treat gMG - more good news about Vyvgart (aka Efgartigimod)
Zilucoplan, (Zilbrysq) approved by FDA for AChR-positive gMG. UCB injection therapy is 1st in US that's once daily and self-given. See the press release.
Move for MG - This is a new series of Youtube videos by Liz Plowman (sponsored by Alexion), a physical therapist (PT) based in Houston, Texas, who specializes in chronic pain conditions. She also is a person living with myasthenia gravis (MG). Episode 1 introduces Liz and how she became a PT. In Episode 2 Liz goes into detail about the similarities and differences between occupational and physical therapy. Additionally, she gives examples for which therapy is best as a solution to specific problems people with MG may face. You can find additional episodes, as they are added, on the More Than MG Youtube channel.
2 types of anesthesia found safe, effective for surgery in MG according to research data just released. For reference, here are the normal Types of Anesthesia Used During Surgery; also: The Side Effects and Complications of General Anesthesia.
Sustained Benefit for Newly Approved Myasthenia Gravis Drug in Early Responders - More good news about zilucoplan (Zilbrysq)
Nipocalimab up for approval for gMG in the US (Myasthenia Gravis News) This new drug is in the same drug class (FcRn blockers) as MG drugs Vyvgart and Rystiggo. If approved by the FDA, it will cover a wider range of types of MG compared to the latter two.
A new app for MG patients, Improve MG App, was developed by the renown MG Neurologist and researcher, Dr. Srikanth Muppidi of Stanford University. The app helps patients track their symptoms, MG-ADL scores, etc. The app is great because you can record audio and video of yourself to show to your doctor, etc. Feel free to download and try/use this app. Connie, our group leader, is scheduling Dr. Muppidi to present his app at one of our early 2024 mgsocalgroup virtual meetings. Stay tuned for info on the date and time of this exciting presentation. Also be sure to check out Dr. Muppidi's Digital Monitoring in MG presentation, a printable and downloadable PDF document.
First patient in the world treated for muscle-weakness disease in clinical trial at HonorHealth Research Institute (AAAS) This international clinical trial (NTC06744920), will consider the safety and effectiveness of a drug called Remibrutinib.