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  1. Today
  2. Living in the U.S., where disease-modifying therapies (DMTs) seem to be prescribed as a matter of course to people with multiple sclerosis (MS), I was surprised that it doesn’t seem to be the case across the pond in the U.K. An article just published on the Multiple Sclerosis and Related Disorders website reports that in 2013, only 59 percent of people with relapsing-remitting multiple sclerosis (RRMS) in the U.K. were prescribed DMTs. On the other hand, prescribing rates ranged between 75 and 91 percent in Sweden, Italy, Spain, Germany, and France. That disparity prompted the authors to examine what factors influence the DMT decisions of U.K. healthcare professionals (HCPs). In interviews with 34 HCPs across the U.K., the researchers discovered that the decision involves more than just a simple risk-benefit analysis. Following are some of the factors those MS neurologists and specialist nurses said they consider — and there’s no consensus between any of them. NICE guidelines NICE is the U.K.’s National Institute for Health and Care Excellence. It’s a quasi-governmental body that recommends which medical treatments should be prescribed based upon a cost-benefit analysis. (Currently, NICE is involved in a dispute over whether Ocrevus (ocrelizumab) is a cost-effective treatment.) NICE is, perhaps, the most influential factor in a DMT decision in the U.K. But according to the interviews, these NICE guidelines are followed differently in each of the four U.K. nations (England, Wales, Scotland, and Northern Ireland). Neurologists in England considered the guidelines to be “mandatory criteria which they were ‘obliged to follow.'” But in Wales, a healthcare provider thought they had “a little bit more flexibility to use the medication that you think’s most appropriate.” In Scotland, several said, “guidelines are guidelines, not really more than that.” What is a relapse? This is another area where there seems to be a lack of consensus among U.K. healthcare providers. DMT eligibility is based on the frequency and severity of relapses. However, what constitutes a relapse appears to be in dispute. “What is a disabling relapse?” one HCP asked. “If you’re a piano player and your left hand goes numb well that might be disabling for you, but if my left hand went numb for a few days it may well not be at all disabling for me.” Another said, “I think relapses definitely are a bit of a minefield.” Another complained that some HCPs were trying to judge whether a patient has had a relapse using only a telephone consultation. What about risks? Basing decisions on the risks versus the benefits appears to be a similar process to what I’ve found as an MS patient in the U.S. Some HCPs consider themselves “active” about treatment decisions, some are “fairly aggressive,” and others are more cautious about prescribing DMTs — the latter was particularly true for DMTs that have potential for more serious side effects. What’s the medication’s track record? This, again, is similar to what I’ve heard from neurologists in the States. The larger the number of people who have been treated with a particular DMT, the more likely a neurologist is to feel comfortable prescribing it. If a neurologist has been involved with the medication’s clinical trial, it also raises the comfort level with it. What are colleagues doing? Medical conferences, peer networks, and the like can have an impact. “I didn’t want to be out on a limb doing my own thing, I wanted to be in with the group and I wanted to be able to benchmark myself against the group,” said one provider. What improvements are needed? The researchers say this study suggests “a need to acknowledge individual differences in health professionals’ attitudes to prescribing DMTs, and the impact of these attitudes on patients’ access to treatment.” Specifically, there is a need to acknowledge differences in how relapses are interpreted, the guidelines for prescribing DMTs, and the organizational “cultures” that affect treatment decisions. However, while presenting the problems, the authors stop short of making recommendations for improving access to DMTs for people with MS in the U.K. I’d like to hear from readers in the U.K. about what they would suggest needs to be done. You’re invited to follow my personal blog at www.themswire.com. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. The post Consensus Lacking on How MS Medications Are Prescribed in the UK appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  3. Pendopharm’s Glatect (glatiramer acetate) — a treatment for patients with relapsing-remitting multiple sclerosis (RRMS) — has been added to the public drug plan in the Canadian province of British Columbia, and is now the only glatiramer-based treatment for RRMS patients there using the plan. After Copaxone (glatiramer acetate, marketed by Teva Pharmaceuticals), Glatect is the first commercialized glatiramer-based medicine in Canada, and now available via prescription plans in seven provinces. Pendopharm, which is a division of Pharmascience in Montreal, launched the therapy in September 2017 as a lower-cost alternative to Copaxone. Glatect has been the sole glatiramer-based treatment approved by PharmaCare Special Authority in British Columbia for requests or renewals of such treatment since Nov. 27. With this decision, British Columbia becomes the first Canadian province to require a mandatory transition to Glatec for continued public coverage of glatiramer acetate treatment, according to a Pendopharm press release. Of note, patients taking glatiramer acetate must have transitioned to Glatec by May 28, 2019, to maintain PharmaCare coverage (some exceptions may apply). As with Copaxone, the active ingredient in Glatect is glatiramer acetate, which is a mixture of small synthetic proteins that resemble components of the myelin sheaths (the protective cover of neurons that is destroyed in MS). While its mechanism of action is not entirely known, glatiramer acetate is believed to redirect the MS-causing autoimmune response against myelin. As such, it works to lessen the number and intensity of flares patients’ experience. Glatect offers a daily 20 mg/mL subcutaneous injection, through pre-filled syringes with autoinjectors that allow patients to self-administer the medicine. Patients can contact the Ally Patient Support Program for injection training, as well as reimbursement and financial support. “Our goal is to ensure a smooth transition to Glatect. Patients are our priority, which is why all Glatect patients are eligible for the Ally Patient Support Program,” Jean-François Lemieux, VP and general manager of Pendopharm, said in the release. Canada has one of the highest rates of MS in the world. Although the numbers vary between different studies, reports estimate that 77,000 adults live with the disease in the country. Glatect is available through public drug plans in seven Canadian provinces — Ontario, Alberta, Québec, Saskatchewan, Manitoba, New Brunswick, and British Columbia; plans for all, except British Columbia, require RRMS patients starting on a glatiramer-based treatment use Glatect. “Glatect is a prime example of how Pendopharm, a Canadian company, contributes significantly to the sustainability of the health care system in Canada by making important therapies more affordable and, therefore, more accessible to patients,” Lemieux said. In the U.S., the Food and Drug Administration (FDA) has approved two glatiramer acetate injection therapies, in addition to Copaxone — an equivalent generic by Mylan, and Glatopa, a generic form by Sandoz. The post Glatect Added to Public Drug Plan in British Columbia as Sole RRMS Treatment of Its Type appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  4. The Washington University School of Medicine in St. Louis (WUSTL) will create a new research center to investigate and advance the development of tracers for positron emission tomography (PET) scans. The center, which will be established at WUSTL’s Mallinckrodt Institute of Radiology (MIR), is going to focus on the development of tracers to specifically detect signs of inflammation and oxidative stress (a process caused by harmful reactive oxygen molecules). These two biological features are core metabolic processes involved in several human diseases, including multiple sclerosis, atherosclerosis, Alzheimer’s disease, and cancer. Robert J. Gropler, MD, a professor and researcher at WUSTL, received a five-year, $6.3 million grant from the National Institute of Biomedical Imaging and Bioengineering of the National Institutes of Health (NIH) to help establish the new PET Radiotracer Translation and Resource Center at MIR. “This center is intended to get over the roadblocks to using tracers in people — much of which comes down to capacity,” Gropler said in a university press release written by Tamara Bhandari. Gropler also is senior vice chair and division director of radiological sciences at MIR. PET scans use radioactive compounds that can trace specific signals in the body. These tracers can be administrated by injection, inhalation, or orally, and when they find the particular sign they were designed to identify, they show up as bright spots on scans. Based on these images, researchers and clinicians can identify markers linked to diseases, such as inflammation spots or protein toxic clumps. To develop radioactive tracers that can be used in the clinic it is necessary to have a machine called a cyclotron. Because this is a multimillion-dollar piece of equipment, MIR is just one of the few institutes that has one. This grant will allow the new PET center to achieve its goal, and produce radioactive tracers that can help improve diagnosis for several diseases. The PET Center will work as the headquarters and central site for research and development of the experimental radioactive imaging tools. Selected experimental radiotracers that are more stable and show early potential will be sent to other institutions to be tested further by previously trained researchers and technicians at other institutes. “Once we have designed a tracer, it needs to be tested in animal models, and if those look promising, in people,” Gropler said. “By partnering with other institutions, we can test several different animal models simultaneously, and do multicenter clinical trials, drawing from a larger patient population than we have here. This will vastly accelerate how quickly we can evaluate these tracers and get them to the people who need them,” Gropler added. To date, only a few PET-based diagnostic approaches have been approved by the U.S. Food and Drug Administration. This collaborative effort is expected to help speed the development and future regulatory approval of such novel diagnostic tools. The post WUSTL Team Receives $6.3 Million Grant to Develop PET Scan Tracers appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  5. Marijuana has many potential uses, which includes the treatment of specific symptoms of multiple sclerosis (MS). Learn more about the possible benefits of marijuana for people with MS here. View the full article on Medical News Today
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    Pregnancy in MS

    Mult Scler. 2018 Dec 3:1352458518816614. doi: 10.1177/1352458518816614. [Epub ahead of print] Pregnancy and multiple sclerosis in the DMT era: A cohort study in Western Austria. Bsteh G, Algrang L, Hegen H, Auer M, Wurth S, Di Pauli F, Deisenhammer F, Berger T. Abstract BACKGROUND:: Multiple sclerosis (MS) predominantly affects women of child-bearing potential. Pregnancy in MS is still a controversial issue lacking standardized treatment recommendations. OBJECTIVE: To examine the reciprocal effects of pregnancy, MS, and disease-modifying treatment (DMT). METHODS: We analyzed 387 pregnancies in 239 women with relapsing remitting multiple sclerosis (RRMS) and ⩾1 pregnancy, establishment of diagnosis >1 year before conception, and ⩾2 years of follow-up after delivery. Relapse rates and Expanded Disability Status Scale (EDSS) scores were compared in the year before conception, during pregnancy, and 2 years postpartum. Binary logistic regression was used to investigate predictors of risk for relapses and disability progression during pregnancy and postpartum. RESULTS: Risk of relapse and disability progression during pregnancy was predicted by pre-conception relapse activity, higher EDSS score at conception, use of highly effective disease-modifying treatment (H-DMT) pre-conception, and prolonged washout period. Postpartum relapse and disability progression was associated with relapse activity pre-conception and during pregnancy and use of H-DMT pre-conception. Early restart of DMT reduced the risk of postpartum relapse. CONCLUSION:: A personalized approach in planning pregnancy in women with MS while on H-DMT needs to be adopted. It seems reasonable maintaining natalizumab closer to conception and restarting the drug early postpartum to reduce the considerable risk of disease reactivation during early pregnancy and after delivery. MS is a condition that predominantly affects women in their child bearing years. Around 20-30% of women with MS go on to have children. Although, pregnancy as a whole is protective, there is an increased risk of relapses during the first 3months post-delivery; particularly in those who don't promptly re-start their DMTs. If you're on a DMT (disease modifying treatment), there isn't clear evidence-based guidance on what to do with the treatment. There are recommendations from regulatory authorities that tell you to avoid pregnancy during the course of treatment and do a wash out of 2-3 months prior to conception. But, it's only recently with the advent of highly active DMTS that we have realized that with this comes an increased risk of severe relapses upon on stopping them. In Innsbruck, the authors retrospectively analyzed 387 pregnancies in 239 women. They found that the risk of relapse during the course of the pregnancy was determined by: a) the pre-pregnancy relapse rate, b) using a highly active DMT (natalizumab or fingolimod), and c) a longer wash-out period. The risk of worsening disability was also influenced by these factors. Those without a relapse in the year before pregnancy on highly active DMT and a wash-out period less than <4 weeks had a five-fold risk-reduction in relapse and disability progression. Equally, pregnancy appeared to have no impact on those on moderately effective DMT, such as interferons, copaxone and tecfidera, or no DMT at all. Reassuringly there was not a disproportionate increase in spontaneous abortions nor foetal deaths in those on DMTs studied here, but MS did seem to result in lower birth weight. In summary, the planning of pregnancy in MS for those on DMTs needs to be pre-planned. Given the findings from this study, continuing treatment up to conception or even until conception for the highly active DMTs and re-starting the treatment early seems sensible. View the full article on Barts MS Blog
  7. Yesterday
  8. RSS News

    #ThinkSocial: survey results

    Thank you and Thank you! Firstly, for completing our #ThinkSocial survey, which was very useful and a good guide of why this campaign is important. And secondly, for the very kind donor who has given us a very generous grant to study whether, or not, targeted public engagement and patient-public involvement activities increase social capital and improve outcomes for people living with MS. By formally studying this we hopefully generate the necessary evidence to help others adopt our approach and to help get their PeS and PPI initiatives funded by the NHS and other relevant payers. This survey and funding news coincides with the publication of our review on social capital. Well done to Saul and Alison for taking this forward. Saul is funded by an ECTRIMS fellowship and this paper will count towards his outputs. Saúl Reyes, Gavin Giovannoni and Alison Thomson. Social capital: Implications for neurology. Brain and Behaviour ePub 08 December 2018. Social capital (SC) is a broad term that encompasses the many resources derived from social connections. The contemporary study of SC in public health has deep roots in the related fields of sociology, economics, and politics. Its multidisciplinary nature and the varying potential ways it could affect individuals have resulted in different but overlapping models to approach SC in the health field. There are currently no standardized measures of SC, and even more, challenging its impact on health outcomes seems to vary according to the level of analysis. Despite the accumulating evidence that supports a protective effect of SC on mental and physical health, and mortality, not enough attention has been paid to the potential drawbacks of SC. The role of SC in neurological disease is just beginning to be explored. Concerted efforts are needed to ensure that empirical evidence on SC could be properly translated into interventions for health‐promoting purposes. In this paper, we review the current state of scientific knowledge on the subject of SC, with a focus on its application in the field of neurology. CoI: none for the post View the full article on Barts MS Blog
  9. 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 in regards to seriously ill cancer patients, and I’m pleased to see that its use is on the rise when the situation dictates it for people with MS. Palliative care in a hospital setting rose 30-fold among multiple sclerosis (MS) patients in the U.S. from 2005 to 2014, and was associated with longer hospital stays and greater numbers of in-hospital deaths but also lower overall costs, according to a large data study. Increased reliance on such care was particularly evident after 2010 and partly attributed to the passage of the Affordable Care Act, the healthcare reform law enacted in March of that year. *** Lemtrada Linked to Bleeding in Lungs in Case Report, 1 of 5 MS Cases Worldwide, Study Says This headline is a little unclear, so let me try to help. One woman being treated with Lemtrada (alemtuzumab) is reported to have suffered bleeding in her lungs. A case study was conducted and is reported in this story. Four other Lemtrada patients are reported to have suffered the same lung bleeding, but no studies have been published about these cases. In all five patients, the problems occurred during their first round of treatments, following their second infusion. A potentially life-threatening case of bleeding in the lungs has been reported and attributed to treatment with Lemtrada by a woman with relapsing-remitting multiple sclerosis (RRMS). Her medical team found diffuse alveolar hemorrhage in this patient — which resolved in about a week without treatment. The scientists advised that clinicians be alert to signs of lung bleeding, such as sudden onset of respiratory distress or coughing up blood, in MS patients using Lemtrada. *** Lemtrada’s Use Carries Rare But Serious Risk of Stroke and Artery Tears, FDA Warns Another possible side effect of Lemtrada was reported in the past week. But a key word in this advisory is “rare.” Only about a dozen cases have been reported over the past four years. MS patients need to know about this, but we also need to put this advisory into perspective and then add it to the information we consider when weighing the benefits of this medication against its risks. The U.S. Food and Drug Administration (FDA) has issued a safety alert, warning about a rare, but life-threatening, risk of stroke and artery rupture in patients with relapsing forms of MS being treated with Lemtrada. Since the medication’s approval in 2014 to treat relapsing MS, 13 cases worldwide of ischemic stroke (caused by clots) and hemorrhagic stroke (caused by bleeds) or of tears in the lining of arteries in the head and neck have been reported to the FDA. All of these cases are associated with the medicine’s use. *** RRMS Patients on Rebif Show High Treatment Adherence and Fewer Relapses in Real-World Study Rebif gets good marks in this small 64-person study. But note: As we mention in our report, the study was paid for by Merck Hellas, a branch of the company that developed Rebif. Patients with RRMS on Rebif (interferon beta- 1a), using the RebiSmart autoinjector, have high treatment adherence, despite seasonal weather or temperature fluctuations, as well as fewer relapses over one year, a real-world study reports. The study, “Seasonal adherence to, and effectiveness of, subcutaneous interferon β-1a administered by RebiSmart in patients with relapsing multiple sclerosis: results of the 1-year, observational GEPAT-SMART study,” was published in the journal BMC Neurology. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. The post MS News that Caught My Eye Last Week: Palliative Care, Lemtrada and Lung Bleeding, Stroke Risk, Rebif Report appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  10. Microglia, the resident immune cells of the brain, were seen to change throughout the lifespan of mice in a study — and to be diverse, with distinct cell subtypes. Those with pro-inflammatory behavior may be disease-causing, as they were found to accumulate in the brains of a mouse model of multiple sclerosis and brain tissue from MS patients. These results open new possibilities for targeted treatments to enhance microglia’s protective properties, and to block microglia cells that promote MS and other diseases. The study, “Single-Cell RNA Sequencing of Microglia throughout the Mouse Lifespan and in the Injured Brain Reveals Complex Cell-State Changes” was published in the journal Immunity. Microglia comprises 10 percent of all brain cells, and are known to respond rapidly to changes in their environment. They are one of the dominant cell types found in MS lesions, and their presence is associated with damage to nerve fibers (axons) and the loss of the protective myelin sheath (a hallmark of MS). However, whether all microglia cells are the same or whether they are heterogeneous, i.e., they exist as sub-populations, remained unknown. “Up until now, we didn’t have a good way of classifying microglia. We could only say how branched they look, how dense they look under a microscope,” Timothy Hammond, the study’s first author and a research fellow in neurology at Harvard Medical School and Boston Children’s Hospital, said in a press release. “We wanted to get an idea of what microglia were doing and ‘thinking,’” he added. Hammond and colleagues at Harvard investigated the potential heterogeneity within microglia cells of mice. For that, they analyzed the RNA content — RNA is the chemical cousin of DNA — of individual microglia cells in the mouse brain throughout the animals’ lifespan (starting before birth and through to death), as well after acute brain injury. In total, the team analyzed more than 76,000 individual microglia using a technique called Drop-seq, developed in the lab of Steven McCarroll, PhD, at the Blavatnik Institute at the Harvard school, which allows them to see which genes are on or off. Researchers looked at single cells’ RNA profiling, and by comparing profiles among the different cells identified nine subgroups of microglia, which expressed unique sets of genes. Some groups of cells were almost exclusively present during the embryonic or newborn stages of life, while others appeared only after brain injury. These results showed that microglia are heterogeneous, or diverse, and that the different cell groups may contribute differently to diseases like MS. “The signatures also tell us something about what these cells are doing,” Hammond said. “If we see microglia in disease, for example, we can begin to parse out: Are they contributing to the disease or are they trying to repair the brain? We think this will help uncover new and interesting roles for microglia.” Next, the researchers overlapped the different microglia subgroups with a map of the brain to see where the cells were located. Results showed the cells were located in different regions of the brain – for example, cells in group 4 clustered near the brain’s developing white matter, where nerve cells coated with myelin are located and is the prime target for immune system attacks in MS. This finding suggests that this microglia subgroup could be involved in myelination of nerve fibers. “We don’t see those microglia at any other time point or area of the brain,” Hammond said. “We think they could be important to how the white matter develops and how axons connect to different parts of the brain.” Researchers then used a mouse model of MS, and detected the activation of a specific subgroup of pro-inflammatory microglia cells — group number 8. This subtype was also found in brain tissue samples from MS patients. “These microglia are very inflammatory compared with normal microglia,” Hammond said. “It could be a pathological subset that we normally wouldn’t see, but because we sequenced so many microglia we were able to detect this small population.” Microglia cell diversity was greater in mice at young ages, but persisted throughout the animals’ lifespan and even increased, in the case of pro-inflammatory cells, in the aged brain and diseased brains. “These distinct microglia signatures can be used to better understand microglia function and to identify and manipulate specific subpopulations in health and disease,” the researchers wrote. Specifically, if researchers can identify and assess the contribution of each cluster of microglia cells to diseases like MS, they might be able to design tailored treatment approaches that block the “bad” microglia cells that contribute to MS development, and promote those with protective properties that may help halt the disease. “Tim’s work has broad implications for the development of new microglia biomarkers and tools that can be used to track, identify and manipulate specific subpopulations, in both health and disease,” said Beth Stevens, an associate professor of neurology at Boston Children’s and the study’s co-lead author. The post Microglia Cells Diverse with Distinct Subtypes and Certain Ones May Contribute to Inflammation, Study Finds appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  11. With a renowned researcher and her team chosen to lead it, work can now begin on the first project of its kind in Canada designed to shed more light on multiple sclerosis progression, and better ways of diagnosing and treating it. Leading the pioneering $7 million project — the Canadian Proactive Cohort Study for People Living with MS (CanProCo) — will be Jiwon Oh, MD, PhD, a neurologist with St. Michael’s Hospital in Toronto, Ontario. Oh will direct a team of nearly 50 multi-disciplinary MS researchers from across Canada, the Multiple Sclerosis Society of Canada and Brain Canada announced. A neurologist and researcher, Oh’s work is focused on the development of advanced magnetic resonance imaging (MRI) techniques in MS. She has medical and doctorate degrees, and has completed a clinical fellowship at the Johns Hopkins School of Medicine. Oh also helped establish the North American Imaging in Multiple Sclerosis Cooperative, which joins together academic centers that use MRI in their MS studies. “We are thrilled to have Dr. Jiwon Oh and her research team spearhead this unique project, which focuses on answering some of the perplexing questions around MS,” Pamela Valentine, the MS Society’s president and chief executive officer, said in a press release. “As a leader in MS research, Dr. Oh has dedicated her career to studying this disease and finding a cure. The team collaborating on this project brings a wealth of knowledge to the table,” Valentine added. Besides seeking more information about how MS progresses, researchers will also try to figure out why, in some patients, the disease doesn’t progress. They also hope to identify progression triggers, and learn more about the management of such triggers. Additionally, the team will assess the overall effect of MS on individuals and Canada’s healthcare system. To gain a better understanding of each patient’s unique MS journey, researchers will study patient data, taking into account socioeconomic, biological, and physical factors. Their hope is that data will lead to improved diagnosis and treatment, and prevent the development of disease symptoms. According to the team, study results could have a positive impact on patients’ day-to-day lives, and reframe discussions around disease progression. A centralized and open patient databank could also help researchers investigate other neurodegenerative disorders, including Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis (ALS), and Huntington’s. Despite significant advances in MS research, disease progression is not fully understood. The CanProCo project ultimately seeks to link biological discoveries to real-world and clinical findings to generate a comprehensive picture of MS progression, with the hope of learning more about this unpredictable disease and finding a cure. “By gaining a better understanding of MS progression, we can make a significant impact on how people manage their disease, and improve the quality of life for many Canadians,” Oh said. CanProCo is funded in part by Brain Canada and Biogen Canada. Patient recruitment for the study begins early next year. Please visit this link for more information about CanProCo. According to the Society, Canada has one of the world’s highest rates of MS. Every day, 11 Canadian residents are diagnosed with MS. The post Research Team Chosen to Lead to Novel Research Project in Canada into MS Progression appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  12. Shirl

    Time for a holiday

    Fab! I read @Stumbler's reply in my mail inbox, followed the link to it, scrolled up, much relieved to discover the thread is about our PM, not a deceased Saint. You've made me smile on a day when a dental appointment is my no1 priority. Re MPs and their workload, don't forget their proven record of fallibility - expenses scandal, extra-marital affairs, etc. They are a microcosm of society at large. I have hope for the future in my local MP. Totally approachable, reliable and hard-working. He's just become Minister for Universities (and other departments in the BEIS umbrella). He is an author in his 'spare time', very much a rising star. When we focus on persons who are MPs, it's easier to appreciate their commitment. And yes/no, I wouldn't want to be in May's famous shoes.
  13. Help us spread the word, we have a new study open to people living with MS in the UK! This study is looking at vitamin D levels in the MS population and we know that vitamin D research is one of the top research priorities for people living with MS. This strong interest in vitamin D research has been demonstrated by the overwhelming response we have had to this study - but we still need more participants! The more people we can hear from the better we can understand the vitamin D status in the MS UK population and the factors that influence it. This information can be used to help design future vitamin D randomised control trails so it is really important. This is a new type of study for us and it uses remote sampling. This means that we can involve people from all across the UK – it doesn’t matter where you live or how mobile you are. We think that remote data gathering and sampling could be a useful research tool to study other aspects of MS as well. So assessing the feasibility of using remote sampling technologies amongst the population is another thing we are interested in. What’s involved? This study has two parts – the first part involves answering a questionnaire that looks into various lifestyle factors that can affect your vitamin D levels. This includes questions about your diet, outdoor activity levels, sunblock usage and, of course, vitamin D supplementation habits. The more responses we have to this the better! The second part to the study will involve selected participants being sent sampling kits to their home. For this part of the study we ask that each participant invites a friend to participate - someone who is the same sex, similar age and lives nearby. Your friend will serve in our matched control group and allow us to look at differences between the people with MS and people without MS. The sampling kits include everything needed to send us finger prick blood spots and cheek swabs so we can look at vitamin D levels and the genetic factors that influence it. We will only be sending these kits to 500 participants so please don’t worry if you don’t get one. These will be sent out over the course of a year so even if you are selected you may not receive a kit for some time! Interested? We think this study will be of real interest to people living with MS, and it is easy to participate. There are no visits to meet our researchers and it can all be done from your home. The best way to get involved with this study is through the MS Register where you can find a link to the study. But if you are not on the MS Register or don’t wish to participate that way you can email Nikki to express an interest and receive the Patient Information Sheet. by Nikki Vickaryous Nikki Vickaryous is a Postdoctoral Research Assistant that has recently joined Dr Ruth Dobson and her team in the Preventive Neurology Unit, Queen Mary University of London. View the full article on Barts MS Blog
  14. Stumbler

    Time for a holiday

    I wonder what Mother Teresa's monthly overtime bill looks like?
  15. Last week
  16. Nick

    Time for a holiday

    Great Post Peter, What amazes me is the stamina that Politicians need to endure to face the extreme stresses of high office. Who indeed would want to be in Mr's Mays shoes right now? Churchill once said, 'Democracy is the worst form of government, except for all the others', and that is the situation in Parliament right now where you are seeing a massive dilemma being played out in democratic fashion. It's all chaotic, but that's life, give it some time and I'm sure it will all work out. I don't follow , I'm a celebrity, But my monies on William & Harry and their fab (Royal) families. Nick
  17. I did a post-ECTRIMS interview with a Portuguese health magazine last week. The interview has helped me reflect and formalise some of my many ideas about secondary progressive MS that have been fermenting in my cortex for some months. I have therefore put pen to paper using a new format the self-interview. Q: Prof G what was your main highlight at ECTRIMS 2018? Without a doubt the acceptance by the wider MS community that progressive, or more advanced, MS is modifiable. Until quite recently most people thought that once someone with MS loses the ability to walk it is over for them from a treatment perspective. The two-stage MS hypothesis has been responsible for entrenching this worldview, i.e. an early modifiable inflammatory phase that is then followed by a secondary neurodegenerative phase. Q: You say MS is #1_not_2_or_3_diseases; how does this position sit with the positive siponimod in secondary progressive (EXPAND) trial results and negative fingolimod in primary progressive (INFORMS) trial results? Firstly, these were very different studies. The PPMS, or INFORMS, study was much smaller study and hence potentially underpowered for the question it was asking. The INFORMS population had less ‘inflammatory’ activity and was more advanced in terms of the biology of MS than the EXPAND population. More importantly, the SPMS or EXPAND study was event-driven and continued until there were enough events to get a result. I don’t think the discordance of these results supports MS being more than one disease. Another aspect that has been ignored is the obvious fact that fingolimod and siponimod are different drugs and may differ in their mode of actions, i.e. siponimod may have subtle effects within the CNS or potentially off-target effects that explain some of its efficacy. Q: Do you think the EXPAND trial results are clinically meaningful? Yes, I do think they are clinically meaningful because if you have SPMS having a drug that will slow down your disease progression is better than having no drug. The unmet need in SPMS is enormous. I agree that the effect on disease progression may seem small in terms of numbers, but this treatment effect will get bigger with time, because of therapeutic lag. It takes time for anti-inflammatory therapies to have an effect in more advanced MS because disease worsening in the next year or two is driven by damage sustained in the past. It takes time for this damage to work through the system, hence switching off inflammation now will take years to manifest as a treatment response. It is also important to understand that siponimod will become a platform therapy on which we can build more effective combinations. It is clear that an anti-inflammatory therapy on it own is unlikely to make a big difference in more advanced MS. We need to build a therapeutic pyramid and add-on neuroprotectives, remyelination therapies and in the future neurorestoratives therapies. Regulators don’t like combination therapies unless one of them is a licensed product; siponimod could be that licensed product. Q: What are you going to tell your patients about siponimod? I am going to spread the hope. The ocrelizumab in PPMS (ORATORIO) and siponimod in SPMS (EXPAND) results are just the beginning of a new treatment era in MS. We need to celebrate the results of these trials and build on them. These trial results have challenged and killed the dogma of MS is a two-stage disease and that once you become disabled you are beyond hope. It is also important to manage expectations in that these treatments are going to slow down and not reverse disability, hence many people with MS may not notice a treatment effect. However, we need these treatments as a platform to add on other therapies I refer to above. I am definitely going to tell them about the effect siponimod has on cognition. Trial subjects treated with siponimod were more likely to have their cognition stabilise or improve compared to subjects on placebo. I am sure people with secondary progressive MS value their cognition and this bit of information may help them in making a decision about going onto this treatment or not. Please don’t forget MS is a cause of dementia and siponimod is one way of slowing down the development of MS dementia. Q: In addition to being treated with siponimod is there anything else people with SPMS can do t help? Yes, there is a lot they can do. This is about the holistic management of MS. If they smoke and they want to stop smoking they should seek professional advice about stopping smoking. The need to optimise their diets, exercise and sleep. The should review their medications and see if any medications that could be making their MS worse can be stopped. They should be screened for comorbidities or other diseases and have these treated. If they are having recurrent infections, particularly urinary tract infections, this should be addressed and treated. There is a lot that can now be done to reduce the risk of bladder infections. People with MS should use it or lose it. If MS is affecting some function you should seek advice on what you can do to improve or stabilise function in that particular part of the nervous system. Don’t underestimate the value of rehabilitation and focused exercise programmes to help maintain function. Q: Any final comments? Don’t shoot the messenger. Although progressive, or more advanced, MS seems to have been neglected for many years these positive studies are catalysing many more studies in progressive MS. We need to reflect and celebrate these successes. Stopping to contemplate where we have come from and were are going to does not mean we have reached the end. One of my favourite poems makes this point very well. Stopping by Woods on a Snowy Evening BY ROBERT FROST Whose woods these are I think I know. His house is in the village though; He will not see me stopping here To watch his woods fill up with snow. My little horse must think it queer To stop without a farmhouse near Between the woods and frozen lake The darkest evening of the year. He gives his harness bells a shake To ask if there is some mistake. The only other sound’s the sweep Of easy wind and downy flake. The woods are lovely, dark and deep, But I have promises to keep, And miles to go before I sleep, And miles to go before I sleep.. CoI: multiple. I am an active steering committee member on both the EXPAND and ORATORIO studies. View the full article on Barts MS Blog
  18. Of course not they want a treatment option, just as you do, but I feel we have been shooting ourselves in the foot and unfortunately this mistake means a bullet to your brain. The question is can we learn from these mistakes? MS-SMART in hindsight appears not so smart as we have backed three losers. So whilst the neuros pat themselves on the back for a trial well done (yes it was a fantastic effort by UK neuros to deliver the result..it would not have happened so smoothly in other countries), it doesn't really help you. But it also says to you that you need to wait until the trials are done before putting yourselves at risk from unproven therapies. However, there may have been one winner and three losers as Ibudilast had some effect in secondary progressive MS. This is a anti-asthma drug that have been used in Japan for years. This positive effect was perhaps based on luck and prior knowledge rather than brain power (I may be chastised for voicing this opinion). Why do I say this? As I have said before, Ibudilast is a phosphodiesterase 4 inhibitor that blocks TNF. Pentoxyfilline and rolipram (both PDE4 inhibitors that also block TNF) had already failed in MS and rolipram appeared to worsen events just as infliximab and etanicept (TNF blockers). Ibudilast failed in relapsing MS too. However, there was a signal that it affected brain atrophy in the failed relapsing MS trial. This happened with laquinimod too. A few million pounds later and the laquinimod trial in progressive MS failed. The Ibudilast trial showed some success. What is the difference? Perhaps they were lucky and maybe people in the trial were at a stage where MS would not reactivate or was it because Ibudilast inhibits macrophage function and we believe that macrophages/microglial are important. However, there was data in MS that it could work. If we go back to MS-SMART, riluzol, fluoxetine and amiloride have fallen. I must admit I thought that fluoxetine and riluzol would fall, because they both had a trial failure between the study starting and finishing. I was most hopeful that Amiloride would make it, but it too fell in the optic neuritis trial during the period of the MS SMART trial. This was doomed also because...between the planning and the finishing, data emerged that the damage is done within a month and that you need to get on treatment quickly for it to have a chance of it working and so in the trial people were not going to get on drug quick enough. As we had made the idea for the optic neuritis trial on sodium channel blockers, we knew this and so people had to be on drug within 2 weeks and we managed for it to be within 7-8 days and trial worked. However, there is a real question mark about whether amiloride gets in the brain in humans. Some says it doesn't because it is too water soluble and so can't get through cell membranes. Now you can always push the dose in animals to get it in and the animal experiments used a dose not in excess of the human dose which was not much below a lethal mouse dose. The human dosing is designed to affect kidney function not brain function so was it SMART? I worry. Is brain atrophy the best MRI measure to advancing MS. I am not so sure, as it is liable to artifact because a good anti-inflammatory can get rid of swelling causing the brain to shrink so a trial would fail because the drug was working. This killed off lamotrigine, so we have not learned from this. Will it kill of Biotin also as this failed in brain atrophy. Look at the mouse data counting nerves in mice after one attack (RM1) and four attacks (RM4) you can see that once the nerves take the hit from the attack it takes time for nerves to go but with attacks nerves are lost in this case about 80% loss. Now look at the size of the spinal cord and you can see that it does not change much, therefore brain atrophy which is measuring total loss is missing most of the action. If you look at the blue in the spinal cord section you can see that there is myelin loss but the size is not shrinking because the loss of nerves is being replaced by the scar. There is loss of nerves (black in the bottom picture). So will brain atrophy be fit for purpose? Grey matter loss may be more sensitive. However, the artificial shrinkage in brain atrophy occurs early and as seen in the lamotrigine the shrinkage due to nerve loss in the control group will eventually overtake the the treatment group, but means the studies have to be more long-term catch up What about other treatments Eisele P, Szabo K, Ebert A, Platten M, Gass A. Brain Atrophy in Natalizumab-treated Patients with Multiple Sclerosis: A 5-year Retrospective Study. J Neuroimaging. 2018. doi: 10.1111/jon.12586. [Epub ahead of print] BACKGROUND AND PURPOSE: Studies demonstrated a higher brain volume loss in the first year after initiation of natalizumab treatment than in the second year, but the experiences beyond 24 months are scarce until now. We investigated the evolution of brain volume changes in multiple sclerosis (MS) patients receiving natalizumab for at least 60 months. METHODS: Using annual 3-dimensional magnetization-prepared rapid acquisition gradient-echo (MPRAGE) sequences acquired on a 3 Tesla magnetic resonance imaging (MRI), we investigated percentage brain volume changes (PBVCs) in 10 MS patients (9 women, mean age at baseline MRI = 29 ± 9 years; median Expanded Disability Status Scale = 2 ± 1.5; mean disease duration = 6 ± 5 years) after 12, 24, 36, 48, and 60 months. RESULTS: PBVCs were statistically higher during the first 12 months (-1.48 ± 1.05%) when compared to 12-24 months (-.6 ± .61%; P < .05), but not between 12-24 and 24-36 months (-.43 ± .54%), 24-36 and 36-48 months (-.28 ± .49%), and 36-48 and 48-60 months (-.33 ± .49%; P > .05 for all comparisons). CONCLUSION: Our results contribute to the increasing knowledge of PBVCs in natalizumab-treated MS patients. Our data suggests that after a significant PBVC decrease in the first year, brain atrophy rates show a slowdown during long-term follow-up. So as we said potent anti-inflammatories cause a pseudoatrophy, but shows what the clinical and biomarker studies show that natalizumab is of some use in secondary progressive MS. In the trial it failed to affect EDSS in the two year trial. However if you took this out to 3 years you started to see an effect. So the trial design was not good enough, it needed to be longer. Then there was the hand function and there was significant effect but because it was not a primary outcome the trial failed . So if hand function had been the primary outcome it won't have been a failure and you would of had another treatment option. So neuros kill MS drugs, by designing trials that don't work. I am I wrong to voice this concern? As a recipient of a failed trial when all the science said the trial should have worked, only to find out the trial was loaded with people who did not respond This is the therapeutic lag effect. it takes about 3 months to see an effect on MRI imaging in relapsing MS and looks like it takes 2-3 years for an effect in secondary progressive MS. we learn by our mistakes but it takes years. I am sorry for our failings View the full article on Barts MS Blog
  19. ptlike

    Time for a holiday

    I do feel sorry for Terresa May, some may say she has brought this on herself. Who would want her her job though, obviously nobody or she wouldn't be PM. What ever your politics, as we are people with a long term condition the countries finances and ability to help with care and medical support is so important, probably more so than any other sector. I just hope mp's make the correct decision for the country, unfortunately I think the toss of a coin might be how the decision is made. looking at the world as a whole though we have the Yemen crisis, Syria, the trade war, France is in turmoil and I am sure I have missed something. Who would chose politics as a good career? I'm sticking to wondering who will win I'm a celebrity, my monies on Harry lol and no consequences if i'm wrong. Best wishes Peter
  20. Select item 3051562839. Treatment escalation leads to fewer relapses compared with switching to another moderately effective therapy. Chalmer TA, Kalincik T, Laursen B, Sorensen PS, Magyari M; Members of Danish Multiple Sclerosis Group.J Neurol. 2018 Dec 4. doi: 10.1007/s00415-018-9126-y. BACKGROUND Patients with multiple sclerosis who experience disease breakthrough often switch disease-modifying therapy (DMT). OBJECTIVE: To compare treatment effectiveness of switch to highly effective DMT (heDMT) with switch to moderately effective DMT (meDMT) for patients who switch due to disease breakthrough defined as at least one relapse within 12 months of their treatment switch. METHODS:We retrieved data from The Danish Multiple Sclerosis Registry on all relapsing-remitting MS patients with expanded disability status scale (EDSS) less than 6 who experienced disease breakthrough. We used propensity score matching to compare annualized relapse rates (ARRs), time to first confirmed relapse, time to first confirmed EDSS worsening and time to first confirmed EDSS improvement. RESULTS: Each matched group comprised 404 patients. Median follow-up time was 3.2 years [interquartile range (IQR) 1.7-5.8]. ARRs were 0.22 (0.19-0.27) with heDMT and 0.32 (IQR 0.28-0.37) with meDMT; relapse rate ratio was 0.70 (95% CI 0.56-0.86; p = 0.001). Escalation to heDMT reduced the hazard of reaching a first relapse (HR 0.65; 95% CI 0.53-0.80; p < 0.001). We found no evidence of delayed disability worsening (HR 0.83; 95% CI 0.62-1.10; p = 0.20) and weak evidence of disability improvement (HR 1.33; 95% CI 1.00-1.76; p = 0.05) with heDMT. CONCLUSION: Switching to heDMT is associated with reduced ARR and delay of first relapse compared with switching to meDMT. Patients on DMT who experience relapses should escalate therapy to heDMT.Patients with multiple sclerosis who experience disease breakthrough often switch disease-modifying therapy (DMT). This study says if you are switching make sure you switch a a higher efficacy alternative, Simple View the full article on Barts MS Blog
  21. RSS News

    The Right Hand of Lightness

    There’s a joy in going on a long journey in which I get the luxury of sleeping through the whole thing. It’s practically magical. Or scientifically, like teleportation. I was there and now I’m here without any effort! I’ll never be able to afford a first-class bed on a long-haul flight to somewhere like Australia, but I did once experience this joy on one of my many pilgrimages from London to the Edinburgh Fringe Festival. In the 1980s, I went to so many festivals that I even got to write a book about the thang (“Comics: a Decade of Comedy at the Assembly Rooms,” 1990)! I took the sleeper train from London’s Euston station to Edinburgh Waverley station. It trundles slowly and gently rocks you through the night. Blissful. I have no idea if this service still exists, but to do it, you had to travel first class, and for that, the guard wakes you just before you arrive at 6 a.m. with a steaming cup of British Rail tea. It doesn’t happen often, but sometimes this country can do something that is just about perfect. I don’t want to rub it in (oh, yes I do!), but the whole thing was then polished off by staying at a posh hotel that one can enter by lift from the station itself. Rather a change from my first trip when I slept on a friend of a friend’s house floor, which was admittedly rather spectacularly sighted at the foot of the famed Forth Railway Bridge. The downside was it was a 9-mile drive in each day to get to Edinburgh and the festival! This reverie is apt because this is exactly how I felt on Monday afternoon. I woke up to a finished six-hour infusion. Nurses removed the cannula from my arm while two ambulance people from hospital transport stood invitingly to take to take me home, replete with a soft-looking sheet-covered gurney. Sometimes I’ve waited four or five hours for them to turn up! I’d only managed to wake up long enough to devour a lunch of fish and chips with the absolutely appropriate mushy pea side. Lou Reed wrote a song about a “Perfect Day“; never did I think it could be applicable to a hospital experience. In this case, though, it absolutely could. Two years ago, I started on my long, dark journey of taking Lemtrada (alemtuzumab). My multiple sclerosis was inexorably wilting me, and this was a chance to fight it. After my very first infusion, my right-hand connection to my brain was damaged and my right arm suddenly ached. These symptoms only got worse with each infusion. Immediately, walking got even more impaired. Wheelchair tennis became a distant dream. I could go on, but I’ve done enough of that in previous columns. Now is a time for rejoicing. Even if it only lasts a few days, post-Ocrevus infusion has felt like having a holiday from part of my MS. My hand, though not completely repaired, has improved substantially. I opened a packet of crisps a few hours later; without resorting to using a penknife and shock-horror-bloodbath, I found myself eating them casually with my right hand. It’s gone now, but for a few hours, I could even slightly lift my right thigh. The only time this now happens is after exertion, when clonus literally kicks in — something the uninitiated find disconcerting. I’m among the first to have infusions of Ocrevus (ocrelizumab) at my hospital since the therapy finally received the go-ahead in the United Kingdom. It’s something I’ve fought for and has been somewhat of a struggle. It’s also the only time in my decade-long struggle with sclerosis that a drug has improved things. Even if it turns out to be fleeting, it’s worth it. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. The post The Right Hand of Lightness appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  22. Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even to return our phone calls. The problems extend from the top down to the receptionist and other nonmedical office staff. A group that represents 154,000 doctors has recently announced that it’s taking steps to try to improve that situation. The American College of Physicians has drafted a set of “principles” aimed at creating “partnerships” between doctors, patients, and families. They say these can result in cost savings, better use of healthcare resources, fewer tests, and better patient satisfaction. Most importantly, the ACP believes that following these principles can improve safety, reduce harm, and improve treatment results for patients. The four principles are: Patients and families should be treated with dignity and respect. Patients and families should be active partners in all aspects of their care. Patients and families should contribute to the development and improvement of healthcare systems. Patients and families should be partners in the education of healthcare professionals. The principles suggest some specific actions, such as using language that a patient can understand and working with patients to develop “a shared agenda” for visits. That all looks good, but in the real world … A neighbor just told me that his daughter was diagnosed in November with functional neurological disorder (FND), a serious and perplexing combination of several neurological problems. This man’s wife died about two years ago after suffering with primary progressive MS for 20 years. As you might imagine, he and his family are upset, concerned, and nervous — but those feelings were eased somewhat when they were able to obtain an appointment with an FND specialist at the Mayo Clinic in early December. A day or two ago, however, my neighbor learned that the clinic postponed the appointment until January, leaving this family with their worries in limbo through the holiday season. On social media, I recently read about a woman who had just moved to a new state and ran out of her oral MS medication. Her new neurologist wouldn’t renew the prescription without seeing her and wouldn’t be able to see her for three months. Another woman with MS complained about her neurologist “dodging” her after offering some advice the patient questioned. Every time she calls the doctor’s office, she’s put into voicemail and the calls aren’t returned. Walk the walk, don’t just talk the talk “ACP’s principles position patients and their families in their rightful place at the center of care in partnership with their health care team with the goal of improving outcomes and satisfaction,” ACP President Ana María López said in a news release announcing this project. The ACP’s efforts should be commended. We patients want and need better communications with our healthcare professionals. But those professionals need to actually walk the walk. “Principles” and “partnerships” and “improving outcomes and satisfaction” sound great when you’re viewing something from 10,000 feet. But they’re just lofty goals unless there’s actually buy-in down here on the ground — by practicing physicians and their staffs. I’ll get excited when I stop hearing complaints about calls shunted to voicemail and I start to hear stories about doctors putting their patients first. You’re invited to follow my personal blog at www.themswire.com. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. The post These Doctors Have the Right Idea, but … appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  23. Tysabri (natalizumab) was found to be superior to interferon beta (IFN-β) in a small, 12-month study with relapsing-remitting multiple sclerosis (RRMS) patients, significantly decreasing their disability levels, its researchers report. A vast majority — 90 percent — of Tysabri-treated patients experienced no relapses during the study period, while none of those taking IFN-β were relapse-free. The study, “The Effect of Natalizumab on Disability Score and Relapse Rate of Multiple Sclerosis Patients: a Prospective Cohort Study,” conducted at a single site in Iran, was published in the journal Clinical and Translational Medicine. Tysabri is a humanized monoclonal antibody the binds to the α4β1-integrin molecule, preventing harmful immune T-cells from crossing the blood-brain barrier (which protects the brain) and damaging nerve cells. IFN-β is an immunomodulator that reduces the inflammation in the central nervous system that also damages nerve cells in MS patients. Both have been approved to treat relapsing forms of MS. Researchers compared the clinical effectiveness of Tysabri (marketed by Biogen; monthly intravenous infusion of 300 mg) with that of IFN-β (intramuscular injections of 20 μg, three times a week) in RRMS patients being treated at a hospital in Hamadan. CinnoVex (marketed by CinnaGen, based in Tehran) was the IFN-β-1a therapy used in this study. In the United States, IFN-β-1a is marketed as Avonex, Plegridy, and Rebif. In total, 20 RRMS patients (mean age, 33 ) received Tysabri, and 30 patients (mean age, 36.83) were given IFN-β. Patients were followed for 12 months during 2015–16, and their disability scores (assessed through the expanded disability status scale, EDSS) and clinical signs were evaluated monthly. All patients had been treated with IFN-β, but experienced relapses during the prior year despite treatment. Patients in the Tysabri group stopped using IFN-β and switched to Tysabri; those in the IFN-β group continued treatment with this therapy. Researchers found that although Tysabri-treated patients had higher EDSS scores than their IFN-β-treated counterparts at the study’s start (months 1–4), these scores had lowered significantly as it concluded (months 10–12) compared to IFN-β-treated patients. From study start to month 12, the mean EDSS score decreased to 3.98 from 5.45 in Tysabri-treated patients, and increased to 5.10 from 4.52 in the IFN-β group. The higher a patient’s EDSS score, the worse is his or her disability level. No MS relapses were reported in 90 percent of Tysabri-treated patients during the 12-month study period; the remaining two people in this group (10%) experienced one relapse. Relapses were reported in all IFN-β-treated patients, with 36.6% experiencing one relapse and 63.3% two relapses. “EDSS scores showed a significant decrease in 80% of natalizumab-treated patients,” and the “number of relapses was significantly lower in natalizumab-treated patients compared with the control group,” the researchers wrote. Tysabri, they concluded, is effective at lowering relapse rates and disability scores in MS patients. The researchers added that the results provide further evidence of Tysabri’s effectiveness as a single second-line treatment for RRMS patients. The post Tysabri Seen as Superior to IFN-β in Preventing Relapses, Easing Disability in Small Study appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  24. When I first met Stephanie in March, she was like any healthy 28-year-old coming in to see me for a nutrition consult. Her positive attitude and bright smile filled the room as she told me about her job as a grade school teacher and the new apartment she just moved into with her boyfriend of seven years. “We are a great team,” she said. “Little did he know that his law school wouldn’t be the biggest challenge we’d face as a couple.” Stephanie was diagnosed about a year ago with multiple sclerosis (MS), and behind her beautiful eyes and strong spirit, I could sense her pain at the discovery of the most recent spinal cord lesions after she complained to her doctors of new nerve pain in her feet. She will be starting steroid infusions in a few weeks, and together we hope to design a nutrition and lifestyle plan that will support her health and healing, and preserve her quality of life. Nerve pain is hard to grasp and relentless in its unpredictability. The nerve damage associated with MS has been linked to causative factors including dysbiosis of the gut microbe, autoimmune responses, and increased inflammation, all leading to an attack on the nervous system by the body’s own immune cells. In “The Gut Microbiome in Multiple Sclerosis,” an opinion piece published in Current Treatment Options in Neurology in April 2015, two Dartmouth researchers state: “The gut microbiome has been shown to have profound effects on the development and maintenance of immune system in both animal models and in humans. A growing body of evidence has implicated the human gut microbiome in a range of disorders, including obesity, inflammatory bowel diseases, and cardiovascular disease. Animal studies present compelling evidence that the gut microbiome plays a significant role in the progression of demyelinating disease, and that modulation of the microbiome can lead to either exacerbation or amelioration of symptoms. “Differences in diet, vitamin D insufficiency, smoking, and alcohol use have all been implicated as risk factors in MS, and all have the ability to affect the composition of the gut microbiota.” A holistic relationship links the nervous system with the brain and the gut microbiome. The microbiome is a delicate ecosystem of microbes that live in and on the human body, and each person has a unique one. Understanding its subtlety is key in adopting and adapting techniques for health and healing. This philosophy has strong roots in the Eastern wellness and longevity sciences of Ayurveda (the traditional Hindu system of medicine) and Chinese medicine. Within these systems, nutrition takes on a different meaning when discussing how digestion and assimilation refer to nutrients. They imply and reinforce the importance of discerning what environmental influences we allow into our bodies through the senses, and the capacity with which they program the cells. It is important to recognize and respect the connectivity and influence nature has on the mind, body, and spirit. The food we put into the body is a powerful antecedent for physical and emotional well-being, and diets high in sugar, alcohol, and gluten are triggers that disturb the delicate balance of the microbiome, compromising immunity, cognitive functioning, and cellular integrity. Among studies into the relationship between diet and MS is the “Australian Multi-centre Study of Environment and Immune Function,” or the Ausimmune Study. This multicenter case-control study investigates the role of environmental factors in the development of first demyelinating events — a precursor to MS. Questionnaires detailing the quality and quantity of foods were analyzed, and the findings concluded people eat in two main patterns. The first is a “Mediterranean Style diet,” which is healthy and high in fish, eggs, chicken, turkey, legumes, and vegetables. The second is a “Standard American Diet (SAD),” high in full-fat dairy foods and red meat. These findings were supported by the North American Research Committee on MS (NARCOMS), where a survey suggests healthier diet and lifestyle choices lessen the burden and severity of MS symptoms and potential progression, lending support to the impact food has on our overall functioning. Exploring specific macronutrient and micronutrient breakdown further, fats and antioxidants, specifically, are essential nutrients to consider. Fats protect and are the building blocks of myelin sheaths, and antioxidants help diffuse oxidative damage, the unstable chemical metabolites of oxygen metabolism caused by poor diet and environmental factors. Prebiotics (fiber) and probiotics (live bacteria and certain yeasts) support gut integrity — the balance of good and bad bacteria in the intestines that is necessary for microbial harmony. Certain microbes like Candida (a yeast species linked to fungal infections), which are harmless in normal amounts, have been shown to trigger an inflammatory immune response that may contribute to the breakdown of the myelin sheath during periods of Candida fungal overgrowth in the body. Anti-microbial nutrition interventions, such as garlic, aloe vera, fermented foods like kombucha, coconut oil, and curcumin (turmeric), have been shown to keep overgrowth at bay. So, how can we utilize food and lifestyle as medicine when it comes to managing MS? Working with Stephanie, I designed a basic outline of important nutrients and guidelines, and the space for her to get creative with her choices: Consume unprocessed foods as often as possible. Include medium-chain fatty acids in cooking or in smoothies for the brain and nervous system as they support energy, metabolism, and cognitive health. Examples are coconut oil and palm oil. Eat the rainbow. Fruits and vegetables that range in color contain phytonutrients, such as organic sulfur compounds, polyphenols, and carotenoids. Together these foods help rid the body of toxic chemicals and infuse essential nutrition to reduce inflammation and preserve cell integrity. The best sources of organic sulfur compounds are cruciferous vegetables like Brussels sprouts, bok choy, broccoli, dark leafy greens, kohlrabi, horseradish, cabbage, kale, radishes, mustard greens, cauliflower, and watercress. Polyphenols are naturally occurring chemicals found in plant foods that function as powerful antioxidants. Examples are flavonoids, phenolic acid, stilbenes, and lignans, and are found in tea, legumes, berries, dark chocolate, soy, and red wine. Note to reader: Food-based sources are less risky than supplements, but consideration should always be given to medications being used. Iron status should be looked into as well, as absorption may be compromised when including these micronutrients into the diet.
 Red and orange foods contain carotenoids and the powerful, but often under-appreciated, nutrient lycopene. Lycopene is found in cell membranes and is an important line of defense when the cell is under assault from exogenous or endogenous toxins. The best sources are found in tomatoes, red carrots, watermelon, sweet potatoes, grapefruit, and winter squash. It is best to eat these foods cooked, and with a fat like olive oil, because the bioavailability of lycopene is increased through cooking and the nutrient is fat-soluble, meaning it requires fat to be absorbed. Omega-3 fatty acids come from DHA/EPA marine sources, such as wild salmon, tuna, mackerel, herring, marine algae, and fish oil supplements. Plant-based ALA sources such as chia, hemp, and krill oil are essential but have a low conversion rate to EPA and DHA. About 650 mg/day fulfills the nutritional requirement. Probiotics and prebiotics. Probiotics are “good” bacteria strands found in fermented foods such as kefir, yogurt, kombucha, miso, and kimchi. Prebiotics are fiber-rich raw foods, such as dandelion greens, raw garlic, leeks, legumes, banana, asparagus, jicama, artichokes, and sunchokes. These prebiotic foods serve as an energy source for probiotics and are required to ensure they are able to exert their influence. High-fiber foods from ancient and whole grains include millet, teff, sorghum, buckwheat, and amaranth. They are packed with protein, vitamins, and minerals that impact immunity and enzyme function, and help control blood sugar levels. These grains can be used for breads, crusts, granola, and even added to smoothies for texture. Think choline. Sources found in egg yolks, sunflower seeds, and soybeans are essential precursors to acetylcholine, a neurotransmitter found throughout the nervous system and required for brain and muscle function. Vitamin D and magnesium. 1,000 IU daily of vitamin D is essential for immunity, and magnesium from leafy greens, fatty fish, nuts, seeds, legumes, and bananas enhances its absorption. A study published in the Iranian Journal of Neurology in 2014 indicated that women who take 400 IU daily of vitamin D, the dose typically found in daily multivitamin supplements, are 40 percent less likely to develop MS compared with those who are not. Research has also shown immune disorders are more common in areas with fewer hours of sunlight. For example, MS is more common in Canada and the northern U.S. than in its southern states. It is important to remember to look at the human as a whole being; it is hard to deconstruct and treat symptoms only. The holistic philosophy places equal emphasis on creating and cultivating a foundation of health utilizing mental, physical, spiritual, and emotional therapeutic supports. We are what we eat, but also what we breathe, see, touch, hear, smell, and spend our energy doing. Investing in self-care methods, such as meditation, acupuncture, cupping, breathwork, psychotherapy, massage, and other stress-reduction approaches are essential nutrition for healing and remain priceless allies on the journey. *** Alana Kessler, MS, RD, CDN, E-RYT, is a registered dietitian, nutritionist, weight management expert, and an accredited member of the CDR (Commission on Dietetic Registration) and the American Dietetic Association. She is also a yoga and meditation teacher, Ayurveda specialist, and the founder of the New York City-based fully integrated mind, body, and spirit urban sanctuary, BE WELL. Alana’s BE WELL ARC System and Method Mapping technique is a holistic multi-disciplinary approach to health and wellness that blends Eastern and clinical Western diet and lifestyle support to effect long-lasting behavior change. A graduate of NYU with a BA and MS in clinical nutrition, Alana is dedicated to helping others learn how to nourish themselves, create balance, and understand their true nature through nutrition, yoga, and inner wellness. She leads Yin Yoga workshops and trainings as well as wellness retreats at international locations. Her health, fitness, and lifestyle expertise has been featured in Aaptiv.com, Droz.com, EatThis.com, RD.com, Redbook, WomensHealthmag.com, and Vogue. For more information, visit her website at bewellbyak.com. The post Treating MS with Holistic Behaviors and Strategies: A Nutritionist’s View appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
  25. Aubagio (teriflunomide) has become the first once-a-day, oral disease-modifying therapy (DMT) for multiple sclerosis (MS) to be approved for use in India. Sanofi Genzyme’s therapy is indicated for first-line treatment of relapsing MS. It should be taken each day with or without food, and patients in India will have access to Aubagio tablets at a 14 mg dose each. “This product has the potential to offer an efficacious and convenient treatment regimen … vis-à-vis common treatment options that are injectables,” N. Rajaram, MD, Sanofi India’s managing director, said in a press release.” With Aubagio (teriflunomide, 14 mg), we reiterate Sanofi Genzyme’s commitment to improve and empower the lives of people with debilitating diseases in India.” According to the Multiple Sclerosis Society of India, more than 200,000 people are living with MS in the country. Rajaram mentioned that greater awareness of the disease and access to better diagnostic facilities have led to an increase in MS diagnoses in India. According to Sanofi Genzyme, Aubagio has nearly 13 years of proven clinical efficacy, safety, and tolerability data. The medication works by blocking an enzyme called dihydroorotate dehydrogenase, which is key for the proliferation and maturation of immune T- and B-cells. Both these cells are involved in inflammatory reactions believed to induce loss of the protective myelin layer (the hallmark of MS), with subsequent damage in nerve fibers. “When taken daily, Aubagio (teriflunomide, 14 mg) reduces the number of overactive immune cells that cause the disease flare-ups, while still allowing normal immune cell activity to occur,” said Shalini Menon, MD, Sanofi’s head of medical affairs for India & South Asia. Menon also highlighted results from studies showing Aubagio’s consistent efficacy in “reducing relapse frequency, delaying the accumulation of physical disability and arresting further decrease in brain volume.” Also, “given its convenience as an oral medicine,” Menon added, Aubagio “encourages people with multiple sclerosis to continue with long-term treatment.” Aubagio was approved by the U.S. Food and Drug Administration in 2012, and by the European Comission in 2013. The therapy is now available in more than 81 countries. The post Aubagio Becomes 1st Once-daily Oral DMT for Relapsing MS Patients in India appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
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    Side affects and MS drugs

    Another report on the drug that just keeps giving....A shame it is giving us extra autoimmunities to be aware of. Pisa M, Della Valle P, Coluccia A, Martinelli V, Comi G, D'Angelo A, Moiola L. Acquired haemophilia A as a secondary autoimmune disease after alemtuzumab treatment in multiple sclerosis: A case report. Mult Scler Relat Disord. 2018;27:403-405. Alemtuzumab is a highly effective monoclonal antibody for the treatment of multiple sclerosis (MS). During the immune reconstitution following the use of this treatment severe secondary autoimmune diseases (SADs) can develop. We present the case of a patient affected by active MS who failed to achieve disease control with several disease-modifying drugs and was thereafter successfully treated with alemtuzumab, obtaining no evidence of disease activity and a high quality of life. Twenty months after the first infusion of alemtuzumab the patient developed acquired haemophilia A (AHA), a treatable but potentially life-threatening condition that should be considered a possible SADs associated to this drug. In order to allow an early diagnosis and to prevent possible complications of AHA, routine coagulation tests (prothrombin time and activated partial thromboplastin time) should be included in the laboratory serological monitoring of patients treated with alemtuzumab. Hemophilia A, also called factor VIII (FVIII) deficiency or classic hemophilia, is a genetic disorder caused by missing or defective factor VIII, a clotting protein. Although it is passed down from parents to children, about 1/3 of cases are caused by a spontaneous mutation, a change in a gene. Whilst on the issue of side-effects, it is not just alemtuzumab this is a case about teriflunomide. Palmar pustular psoriasis associated with teriflunomide treatment. Negrotto L, Correale J. Mult Scler Relat Disord. 2018 Nov 19;27:400-402 BACKGROUND:Cutaneous adverse effects of Teriflunomide have been rarely reported. OBJECTIVE AND METHODS:We report a relapsing remitting multiple sclerosis patient that developed palmar pustular psoriasis within one month of teriflunomide initiation. RESULTS:Our patient required discontinuation of teriflunomide due to frequent recurrence of pustules with continuous need of local steroid treatment and resolved completely after teriflunomide discontinuation. CONCLUSION:Pustular psoriasis can be triggered by medications but has not been previously reported in association with teriflunomide treatment, to the best of our knowledge Remember one swallow does not make a summer, but we know psoriasis is related to risk of autoimmmunity. View the full article on Barts MS Blog
  27. In this season of thanks and giving, I have realized the beauty of receiving. I have recognized when to ask for help and how to accept assistance graciously. This has not been my strong suit in the past. I am most at ease with myself when I am of service to others. I am happiest doing things for friends and family. Perhaps this is why I have always enjoyed hosting our family’s Thanksgiving. I recall when this tradition began. Our small dining room table seated four: my husband, my parents, and me. I then think about our recent Thanksgiving. Three leaves in our table comfortably sat 10 family members. By the grace of God, my parents joined my sister and nephew in addition to our daughter, son-in-law, and two grandsons. So much to be thankful for. I joke that I host Thanksgiving so that others can witness the few dishes I cook well. Suffice to say that Julia Child’s place in history is safe — although my daughter could give her a run with her homemade pies. What does any of this have to do with the ability to receive? When I used to race boats, I thrived in a one-person vessel, where I could be both captain and crew. When I was a crew member among many, I lost that feeling. I have difficulty relinquishing control. This is not an enviable trait, and it’s one I continue to modify. In kind, I like to be where things need doing. As mealtime approached and ovens began beeping, I was directed to the couch. This was fortunate for me as my knee was double its normal size. After years of injury, surgery, and other issues, I am due to have a replacement next year. My body was in agony, but my desire to help was genuine. So, too, was everyone’s concern. As I crept into the kitchen to see what I could do, my daughter lovingly admonished me and sent me back to the couch. When I began to get up again my father gently yet firmly told me to sit. So, I sat. And I admit that it felt good. With a cold wrap around my knee, I leaned back and closed my eyes. Even the controlled chaos of my bustling kitchen did not distract me. I was deep in grateful prayer. I thanked God for each sound and the people making them. I smiled at the absence of anxiety. The presence of my loving family overwhelmed my senses. Despite the physical pain, my gratitude was immeasurable. And I received with grace and thanks. I have long since maintained the importance of finding the “silver lining” in any cloud. Living with progressive multiple sclerosis is dark at times. Nevertheless, the bright blessings and life lessons borne of living with the disease continue to inspire me. Learning to receive is in harmony with giving as each one has a season. I continue to thrive by giving, but I am no longer fearful of receiving. With true reciprocity there is no quid pro quo, no accountant, and no memory; just a need to do what is best at any given time. A perfect Thanksgiving. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. The post Receiving with Grace: Lessons Learned with Secondary Progressive MS appeared first on Multiple Sclerosis News Today. View the article on Multiple Sclerosis News Today
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    Alemtuzumab as a cause of stroke

    How does alemtuzumab cause stroke? It is unlikely to be due to secondary autoimmune disease as it occurs too soon after administration. Could it be due to a mechanism that triggers thrombotic mechanisms, for example via platelet activation? Alemtuzumab causes an early and transient low platelet count (thrombocytopenia), which may be related to thrombosis. Adapted excerpt from the FDA website: The U.S. Food and Drug Administration (FDA) is warning that rare but serious cases of stroke and tears in the lining of arteries in the head and neck have occurred in patients with multiple sclerosis (MS) shortly after they received alemtuzumab. These problems can lead to permanent disability and even death. As a result, the FDA has added a new warning about these risks to the prescribing information in the drug label and to the patient Medication Guide. They have also added the risk of stroke to the existing Boxed Warning, FDA’s most prominent warning. The FDA is recommending that patients or their caregivers should seek emergency treatment as soon as possible if the patient experiences signs or symptoms of a stroke or tears in the lining of the head and neck arteries, called arterial dissection, which can include: Sudden numbness or weakness in the face, arms, or legs, especially if it occurs on only one side of the body Sudden confusion, trouble speaking, or difficulty understanding speech Sudden trouble seeing in one or both eyes Sudden trouble with walking, dizziness, or loss of balance or coordination Sudden severe headache or neck pain Most patients taking alemtuzumab who developed stroke or tears in the artery linings developed symptoms within 1 day of receiving alemtuzumab. One patient reported symptoms that occurred 3 days after treatment. Health care professionals should advise patients at every alemtuzumab infusion to seek immediate emergency medical attention if they experience symptoms of ischemic or hemorrhagic stroke or cervicocephalic arterial dissection. The diagnosis is often complicated because early symptoms such as a headache and neck pain are not specific. Promptly evaluate patients who complain of symptoms consistent with these conditions. In the nearly 5 years since FDA approved alemtuzumab in 2014 to treat relapsing forms of MS, the FDA have identified 13 worldwide cases of ischemic and hemorrhagic stroke or arterial dissection that occurred shortly after the patient received alemtuzumab (see Data Summary). This number includes only reports submitted to FDA,* so additional cases that they are unaware of may have occurred. Twelve of these cases reported symptoms within 1 day of receiving alemtuzumab. As a result, the FDA has added a new warning about this risk in the Warnings and Precautions section of the prescribing information in the drug label. They have also added the risk of stroke to the existing Boxed Warning, FDA’s most prominent warning. To help FDA track safety issues with medicines, they are urging health care professionals to report side effects from Alemtuzumab or other medicines to the FDA MedWatch program. CoI: multiple View the full article on Barts MS Blog
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Founded in 2004, MS People UK is a non-profit website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.

If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.

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