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  • First of all great blog! I started Mavenclad a couple of weeks ago, before that i was 4 years on DMF from diagnosis. The relapse i 4 years ago was numbness on both sides of the body from chest to toes. The symptoms withdrew exept from my hands and fingertips. Redness, numbness and mild stiffness in the fingers has persisted ever since but 2 weeks post mavenclad i have noticed a marked improvement. Its not nearly resolved but the improvment comes as a surprise to me as i had come to terms with that it was never going to get better. In your experience could this really be attributed to Mavenclad? Just 2 weeks after the first dose?

    • I had to google as I hadn’t heard about it. Sounds interesting… especially this part….

      “Also, the therapy was shown to restore myelin, which is the insulating sheath around nerve fibers that is compromised in MS patients.”

      It sounds like that’s a bonus to that treatment rather than a specific repair treatment but hey if it works great…..

      • “thoughts on the new data on temelimab?”

        Maybe the most interesting trial happening now for MS. If positive, we will know the cause of MS, that goes beyond EBV.

  • Are there too many “kind of works” treatment options and more like it coming down the line? What I mean is at what point does someone say “stop, this isn’t the best of the best and just another middle of the line treatment” or do the drug companies just plough more and more money in to it for it to end up as a middle line option? Is there a set time frame ie if they don’t start seeing positive results in 5 years, move on?

    With that in mind, all of the options there are now for slowing/halting progression, is anyone, anywhere, even in there parents basement, working on something to repair the damage?

  • Study reveals how immune cells target different tissues

    For the first time, researchers have revealed the different molecular identities of important immune cells, called T regulatory cells, using single cell genomics, in both mouse and human peripheral non-lymphoid tissues such as skin and colon. The researchers from the Wellcome Sanger Institute and their collaborators revealed that T regulatory cells have tissue-specific receptors and other adaptations, which allow them to move to and remain in the correct location in the body. In future, this could allow us to understand how to target therapeutic cells to specific places in the body, for targeted treatments of autoimmune diseases for example.

    Tomas Gomes, joint first author from the Wellcome Sanger Institute, said: “This is the first time that anyone has described the huge varied spectrum of T regulatory cell populations in peripheral tissues. We can see that although these cells share the core identity of T regulatory cells, they are very different across different tissues, with different functions, and even express different receptors to guide them to a specific tissue. This is helping us understand the regulation of the immune system to keep it in a healthy balance.”


  • Newly Discovered Immune Cells Play Role in Inflammatory Brain Diseases

    A team of researchers under the direction of the Medical Center – University of Freiburg has succeeded in demonstrating in an animal model that previously entirely unknown types of immune cells are present in the inflamed brain in the course of multiple sclerosis (MS). The discovery was made by means of a new, high-resolution method for analyzing single cells. The method allowed the researchers from Freiburg and Munich to create a kind of immune cell atlas for the brain. They also showed how these cells promote the development of the autoimmune disease MS.

    The first author of the study, Marta Joana Costa Jordao, doctoral candidate at the Institute of Neuropathology of the Medical Center – University of Freiburg, also managed to demonstrate that different phagocytes in the brain remain chronically activated in the course of the disease. It was previously assumed that they were quickly renewed by circulating blood cells. “This permanent activation of the immune cells could explain why the brain of an MS patient is chronically attacked over the course of years,” says Costa Jordao.


  • General information for patients and carers considering haematopoietic stem cell transplantation (HSCT) for severe autoimmune diseases (ADs): A position statement from the EBMT Autoimmune Diseases Working Party (ADWP), the EBMT Nurses Group, the EBMT Patient, Family and Donor Committee and the Joint Accreditation Committee of ISCT and EBMT (JACIE)


  • How long on average does it take for cell counts to bounce back from Tecfidera use, and does this mean no DMT until they do? I read a comment in one of the posts about asking the right questions about your medication, and if it would hamper your future choices.

  • Drug Combo Creates New Neurons from Neighboring Cells

    A simple drug cocktail that converts cells neighboring damaged neurons into functional new neurons could potentially be used to treat stroke, Alzheimer’s disease, and brain injuries. A team of researchers at Penn State identified a set of four, or even three, molecules that could convert glial cells–which normally provide support and insulation for neurons–into new neurons…


  • Effect of disease-modifying therapies on subcortical gray matter atrophy in multiple sclerosis.

    RESULTS::A total of 86 DMT epochs (DMT-H: n = 32; DMT-L: n = 54) from 78 participants fulfilled the study inclusion criteria. Mean follow-up was 2.4 years. Annualized rates of thalamic (-0.15% vs -0.81%; p = 0.001) and putaminal (-0.27% vs -0.73%; p = 0.001) atrophy were slower during DMT-H compared to DMT-L epochs. These results remained significant in multivariate analyses including demographics, clinical characteristics, and T2 lesion volume.
    CONCLUSION::DMT-H treatment may be associated with slower rates of subcortical GM atrophy, especially of the thalamus and putamen. Thalamic and putaminal volumes are promising imaging biomarkers in MS.


  • How many OCBs can a person have, theoretically? Also, what is the highest number of OCBs you have actually seen reported?

    (My understanding is that if you have OCBs, the precise number isn’t clinically useful in determining prognosis, but I am still curious how many a person can have.)

    • Well in the first part of the story, one of the hallamrks of MS is a leaky blood brain barrier, so maybe mild excitement might be in order. 😉

  • Treat early and effective

    In a real-life setting, long-term outcomes were more favorable following early intensive therapy vs first-line moderate-efficacy DMT. Contemporary surveillance strategies and escalation protocols may be insufficiently responsive. This finding is particularly relevant as patients in real-world practice are typically selected for an EIT approach to therapy on the basis of clinical and radiological features predictive of a poor outcome. These data support the need for a prospective randomized clinical trial.

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