April 14, 2023 News by Marisa Wexler, MS High medical costs for MS patients starting Ocrevus, Lemtrada, Tysabri People with multiple sclerosis (MS) tend to accrue more medical costs after switching to infusible therapies Ocrevus (ocrelizumab), Tysabri (natalizumab), or Lemtrada (alemtuzumab), according to an analysis of data from commercially insured patients in the U.S. “The overall healthcare costs for MS patients increased a lot…
May 28, 2021 Columns by Ed Tobias How Do You Define an MS Cure? “Why aren’t researchers doing more to find a cure for multiple sclerosis?” “Why isn’t more effort and money devoted to this?” I regularly read comments like these after I write a column about a new disease-modifying therapy (DMT) that’s either being tested or has just been approved. Some, like Multiple…
April 9, 2021 Columns by Ed Tobias An Update on My Lemtrada Journey, 3 Years After Round 2 Where has the time gone? It’s been three years since I completed my second round of Lemtrada (alemtuzumab) infusions. So, it’s time to take another look at where this journey has taken me. Lemtrada is a monoclonal antibody treatment that wipes out rogue B- and T-cells in the…
April 5, 2021 News by Aisha I Abdullah PhD Switching From Gilenya to Lemtrada May Not Be Optimal Choice, Study Says Previous treatment with oral Gilenya (fingolimod)Ā is associated with a suboptimal response to Lemtrada (alemtuzumab) and an increased risk of secondary autoimmune disorders in multiple sclerosis (MS) patients, a study reports. However, Lemtrada showed an efficacy in patients switching from various other disease…
January 18, 2021 Columns by Ed Tobias MS News That Caught My Eye Last Week: CBD, Sativex, Lemtrada, Sexual Dysfunction Public-private Partnership Will Assess Therapy Potential, Effects of CBD Have you tried using CBD to treat your MS? I have. I’d hoped it would ease my leg spasms. Some people say it helps, but neither drops under my tongue nor salve rubbed onto my legs seemed to help me.
November 16, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Possible MS Blood Test, IMU-838, aHSCT vs. Lemtrada Neurofilament Light Levels at First MS Event Can Predict Long-term Brain Atrophy Researchers are looking at a protein that’s released into the bodyās fluids when neurons become damaged. They hope it will help them predict ā as far as 10 years down the road from the first indication of…
July 31, 2020 Columns by Ed Tobias Lemtrada and COVID-19: To Treat or Not to Treat? Like others these days, I’m worried about COVID-19. In fact, I’m probably more worried than some. I’m old, I have MS, and I’ve been treated with the disease-modifying therapy Lemtrada (alemtuzumab) ā a trifecta of potential trouble. Lemtrada suppresses part of the immune system. It’s one of the…
May 8, 2020 Columns by Ed Tobias A Good News Story About an MS Treatment I love it when a multiple sclerosis treatment works well for someone. It doesn’t matter if that treatment is a medication, a form of physical therapy, or a diet. Good news is good news. So, when I saw this post on the Lemtrada for MS Treatment Facebook group, I…
April 10, 2020 Columns by Ed Tobias My Lemtrada Journey, 2 Years After My Second Round Happy Lemtrada anniversary to me! It’s been two years since I completed my second round of Lemtrada (alemtuzumab) infusions, and I’m happy to say that the results have been good. Not everyone’s experience with Lemtrada will mirror mine, but I don’t think I’m much different than most. My brain MRI…
February 7, 2020 Columns by Ed Tobias Bladder Problems Keep Many of Us Looking for the Loo Are you frequently up at night for bathroom trips? When you’re outside, are you always looking for a loo? You’re not alone. A recent study confirms that the vast majority of people with multiple sclerosis are dealing with bladder problems. You probably know the symptoms: They include having…
January 10, 2020 Columns by Ed Tobias I Was Seconds Away from Calling the Medics My nose started running about a week before the sledgehammer hit. Then came a chesty cough, not yet as serious as the one that had my wife wheezing, but I was worried that I’d soon catch up with her. I didn’t…
November 25, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Immunoadsorption, MS Therapies Approval, Cannabis-based Capsules for Study, Pregnancy and MS Immunoadsorption May Be Superior to Plasma Exchange in Treating Steroid-resistant Relapses in MS Steroids may be an effective treatment for multiple sclerosis relapses, but they have negative side effects. Many people report a metallic taste, while others find it hard to sleep. And long-term use can affect bone…
November 22, 2019 News by Ana Pena PhD Ocrevus Top Choice of US Neurologists for Active SPMS, But Mayzent and Mavenclad Gaining Interest, Report Says Genentech‘sĀ OcrevusĀ (ocrelizumab) continues to be the most prescribed medication to reduce inflammatory disease in people with active secondary progressive multiple sclerosisĀ (SPMS) amongĀ U.S. neurologists, even though Novartis’Ā MayzentĀ (siponimod) and EMD Serono’sĀ MavencladĀ (cladribine) were approved in March to treat this same MS…
November 11, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: EU Lemtrada Safety Guidance, Targeted Treatment Project, SPMS Patients Unaware of Diagnosis EMA Safety Group Advises Lemtrada Be Limited to āHighly Activeā RRMS Patients at Hospitals with ICUs I’m highlighting this report because, like several Europe-based doctors I know, I think that this decision is an overreaction. While there have been serious complications associated with Lemtrada (alemtuzumab), forcing a patient to…
November 1, 2019 Columns by Ed Tobias My Lemtrada Journey: Observations at 18 Months After Round 2 It’s time for another update on how I’ve been doing with my Lemtrada (alemtuzumab) treatments. The bottom line is that I’m doing well. Lemtrada is a disease-modifying therapy (DMT) delivered in two stages. The first stage entails a series of five daily infusions, while the second stage involves…
October 4, 2019 Columns by Ed Tobias My Fortuitous Footwear Discovery: I Found the Right MS Shoes The other night, I had an MS dream. In it, I was able to lift my left leg as well as I can my right one, regardless of my weak hip flexor. I don’t usually know what’s triggered a dream, but this time I did: My Bioness L300 had…
October 2, 2019 News by Patricia Inacio, PhD Profiling Inflammatory Markers in Cerebrospinal Fluid of Importance in Active MS, Case Study Finds Careful profiling of inflammatory markers in cerebrospinal fluid (CSF) of multiple sclerosis patients, coupled with standard exams and scans, helps in understanding disease evolution and treatment response, a case report suggests. It followed aĀ relapsing-remitting multiple sclerosis (RRMS) patient whose inflammatory markers in the CSF remained high over time, and…
September 27, 2019 Columns by John Connor After Hitting Rock Bottom, I’m on My Way Back Up I’ve been whinging for months now about struggling on through near-constant urinary tract infections. This week’s joyous occasion was finally having a poo (hurrah), but then not having the energy to do anything about the result (boo). I’d spent something like five hours attacking the problem with my new…
September 11, 2019 News by Patricia Inacio, PhD #ECTRIMS2019 – 10-year Data Confirm Long-term Benefits of Biogen’s Tecfidera for RRMS New 10-year data from the Phase 3 ENDORSE trial confirms the long-term benefits of Biogenās TecfideraĀ for patients with relapsing-remitting multiple sclerosisĀ (RRMS), the most common form of this disease. Real-world data from another study also showed Tecfidera to be superior to several other disease-modifying therapies for relapsing MS,…
August 12, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Solution for Lemtrada Complications, CBD Infusions, Vaccines and MS, Music and Exercise Autoimmune Complications Associated with Lemtrada Solved Using Anti-CD20 Therapies, Case Studies Suggest One of the concerns about the disease-modifying therapy (DMT) Lemtrada (alemtuzumab) is that it may raise the patient’s risk of developing a secondary autoimmune disease within seven years post-treatment. This small study suggests that the abnormal proliferation…
May 13, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Lemtrada Satisfaction, Limiting Tysabri’s PML Risk, MS and Pregnancy, Infusions vs. Pills #AANAM ā RRMS Patients Switching to Lemtrada Report Greater Satisfaction with Treatment and Improvements in Quality of Life I’m a self-proclaimed secondary progressive, rather than a remitting, multiple sclerosis (MS) person. But a year after round two of Lemtrada (alemtuzumab), I can agree with this report. Several of my…
April 30, 2019 Columns by Ed Tobias Lemtrada Risks vs. Rewards: Putting the Latest Side Effect Concerns into Perspective There’s been a lot of social media chatter following theĀ recent decision by theĀ European Medicines AgencyĀ (EMA) to initiate a safety review of Lemtrada (alemtuzumab). The EMA has restricted use of the medication within the European Union (EU) while the review is underway. That’s worrying some people who are…
April 29, 2019 Columns by Ed Tobias MS News that Caught My Eye Last Week: Tai Chi Study, Lemtrada Safety Review, Personalized Treatment, Online Depression Therapy Study Will Explore Benefits of Tai Chi, Meditation on MS Patientsā Balance I’ve tried yoga to help with my balance and flexibility and found it useful. But tai chi scares me a little ā it seems too difficult. Maybe, if the results of this study are very positive, I’ll…
February 19, 2019 Columns by Ed Tobias I’m Living With MS, I’m Not ‘Battling’ It A former colleague recently asked me, “How are you doing in your battle with MS?” It was a legitimate question, not one of those throwaway lines of mock concern that we often hear. We were discussing the death of a former colleague who had been diagnosed with MS in…
January 22, 2019 News by Jonathan Grinstein Certain Treatments Linked to Lower Risk of Secondary Progressive MS, Study Shows Initial treatment of relapsing-remitting multiple sclerosis (RRMS) with Gilenya (fingolimod), Tysabri (natalizumab), or Lemtrada (alemtuzumab) is associated with a lower risk of conversion to secondary progressive multiple sclerosis (SPMS), compared with interferon beta or Copaxone (glatiramer acetate), a study reports. Findings also showed that…
December 10, 2018 Columns by Ed Tobias MS News that Caught My Eye Last Week: Palliative Care, Lemtrada and Lung Bleeding, Stroke Risk, Rebif Report Use of Hospital Palliative Care by MS Patients in US Rose 30-fold Between 2005-14, Study Finds Palliative care emphasizes prevention and relief of a patient’s suffering. Its goal is to improve the quality of life of that patient and his or her family. It’s usually thought of…
December 4, 2018 Columns by Ed Tobias How Worried Should We Be About MS Medication Side Effects? Over the past couple of weeks, two warnings have been issued about side effects of multiple sclerosis (MS) medications. First, the U.S. Food and Drug Administration warned about a slight risk of seriously worsening MS symptoms if someone who is using the disease-modifying therapy (DMT) Gilenya (fingolimod) stops using…
November 30, 2018 Columns by Ed Tobias My Lemtrada Journey: Round 2, Plus 7 Months I’m coming up on the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of DecemberĀ 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you. Lemtrada, in case you’re not…
September 11, 2018 Columns by Ed Tobias Things to Know About Flu Shots if You Have MS The start of flu season here in the United States is just a few weeks away. It’s time for my wife and me to get our flu shots, just as we have for as long as I can remember. My neurologist and our primary care physician both recommend the…
August 20, 2018 Columns by Ed Tobias MS News That Caught My Eye Last Week: Lemtrada and B-cells, DMT Efficacy, Botox and the Brain, a Diet Recommendation Lemtrada Can Lower Number of B-cells Infiltrating Nervous System and Forming Clumps, Animal Study Shows I usually stay away from recommending articles about mice studies, but this article does a nice job of explaining how Lemtrada works and the role of B-cells in multiple sclerosis (MS). As…