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MouseDoctor

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  • MD kindly attempted to respond to the following question a few weeks ago – is there any more advice regarding this matter at this stage?

    TONY FONDA
    April 23, 2020 at 7:42 am
    I am still trying to understand the following regarding natalizumab: if a patient is on a 28-day SID regimen, with the last does administered on the first of March (by way of example).
    Patient transitioned to EID and next does is in mid-April.
    Is the patient considered derisked from the 1st of April?
    Or will it take [3] months to wash out SID and fully convert to EID, sort of speak?

    The above question is crucial for many if the government ends up relaxing the lockdown on the 11th of May.

    Reply
    MOUSEDOCTOR
    April 23, 2020 at 8:14 am
    In terms of viral encephalitis yes the de-risking would come from 1 april as far as I would understand, however ProfG or Biogen can correct me. The antibody falls away and allows your CD4 cells to enter brain and this provides the stimulous for the anti-viral response….however it makes the assumption of what targets JC virus and Coronavirus is the same.

  • This is not a DMT question, so hope you can help .
    I don’t get on with Baclofen for spasticity and pain and currently taking Diazepam. Not ideal. So I’ve been waiting on Sativax, which seems like a hollow promise, not in my County. So what is the cost privately, and why the hollow promise ?

    I’ve resisted THC for years, weed, but feel I’m being pushed at the age of 58 to go down this route. Is there any hope on the horizon do you think ? Frustrated with pain. I use, meditation and yoga, can’t do much more myself I feel

    • It depends where you live. In the UK despite the endorsement by NHS, the trusts dont want to pay for it, it is still not seen as being cost effective. Maybe the neuros will comment. As for weed it works for some and not all

      • I’m clearly in a Trust dragging its heels I would have paid a private prescription to trial it, thinking up to£150. I understand it’s double that. No point as I can’t sustain it in the long run. So back to weed.

    • In addition, in the ugent government review of medicinal cannabis a while back, one of the clearly identified uses was for MS-related spasticity. Yet since that report was rushed out, absolutlely no progress since.
      Not good.

      • I think there is no benefit for the government to reduce the pain of possibly what is mostly those with SPMS / PPMS I’m not saying all, but many of us won’t be working. Unlike those newly diagnosed, or maybe last decade, there is more chance of them staying in work, so paying for the DMDs is a pay off. Not for those of us who missed the boat with late diagnosis and opportunities for good DMDs. We want quality of life, and to try good pain management. I’m 58, and beginning to think I’ll never see this in my lifetime. Sounds depressing, constant pain seems to have that affect after a while.

        • I suffered in silence for years until one day I mentioned to my Neurologist that I had involuntary jumping in my legs. We can give you something for that he replied. Tizanidine, a lot of GPS and pharmacists have never heard of it. That says it all, it worked for me, it doesn’t get rid of a lot of the pain, but certainly better than nothing.

  • When will ABN be reviewing DMDs again?
    Although some patients seem to have been treated in UK with Ocrevus for first time in last few months my HCP will not approve my first treatment with Ocrevus until it is ABN approved.

  • I think I had covid back on 5th March, lasted 10 days mainly persistent dry cough and some wheeze. I’m on ocrelizumab. I wasn’t tested back then and I was fine overall, plus nobody was suspecting it unless you had travelled or had contact. Now it seems it could well have been covid as it was probably around earlier than first thought.
    Anyway my question is, will an antibody test ever be likely to show I had it? Am I too long after symptoms plus ocrelizumab may mean I don’t mount as much of a response..?

    I didn’t add it to the MS register because it wasn’t confirmed and I’m still not sure, but I wonder how many more people out there like me there will be, which could make the numbers seem even better.

    • This is the key…With no antigen the antibody response with wane and your IgM response may be long gone, but there is a good chance the IgG response is still there antibodies have a half life of 30 days so every 30 days they could drop an so far of the data I have seen people have still maintained antibody levels for 2 months. They take about 2-3 weeks to appear so that puts you into April.No the question is are asymptomatic people antibody postitive in some papers it is only 20% so senstivity is all. Now you ask the critical point if you have had ocrelizumab do you make an anti-covid response. ProfG tells me Roche have an anti-COVID test as this is one that may be a diagnostic test, Roche makes ocrelizumab and I am sure Roche will be aware of how many people have been infected with COVID. I am guessing all companies have been alerted. So rather than dicking around with registries maybe the companies can leak the data to us and we can stick it on the blog. Sadly if we had allowed to be in the lab we may have got a solution that could answer your question. We are working on it

  • If you relapse after a full course of Alemtuzumab

    What do you do?

    Yep call the ZEALOT

    🙂

    AAN 2020

    The use of Autologous Haemopoetic Stem Cell Transplantation (AHSCT) in Multiple Sclerosis after Alemtuzumab treatment failure: a case series

    All patients experienced clinical and radiological evidence of disease activity and progression whilst on Alemtuzumab. The mean treatment period with Alemtuzumab was 27 months (SD 23.2 months). Mean treatment courses was 2.5. Mean follow up after AHSCT was 48.5 months (SD 32.7). No patient experienced further relapses or MRI disease activity following AHSCT. EDSS scores improved in all patients following AHSCT (mean 1.12 points, SD 0.62). Patients experienced routine grade 1-3 complications during transplantation period. No autoimmune complications were recorded.

    Ps: Wonder who´s the neuro thats gonna forward the patient to that harsh dangerous treatment?

    https://index.mirasmart.com/AAN2020/PDFfiles/AAN2020-002073.html

  • Hey, 2 questions here. I’m on Rituximab and definitely have IgG deficiency due to it (non response from haemophilus and pneumonia vaccines), so much so that I have to get monthly IVIG. So I had the same covid antibody question as the poster above that you answered and would also be interested in the response from Roche. 1) I’ve had a sinus infection for almost 2 years, had plenty of antibiotics, sinus surgery – couldn’t shake it, so have been on IVIG 8 months now which has very much helped the symptoms but not eliminated it completely. I don’t want to be on it forever, but also don’t want to stop a treatment that works. My doc and I talk about this a lot but would love to hear your opinion on what you would do with a patient in this situation. 35 yo 165lb male with RRMS. 2) Also, I had been delaying my Rituximab infusion and testing for B cells. As recently as last Saturday (7.5 months after last infusion which was just one dose of 1000mg), my B cells were at 0. Sunday, a day later, I started feeling some strangeness (sort of light numbness and weakness) in my hands and I haven’t felt that in years since I had been on Rituximab, so I was fairly certain I was starting a relapse.. with 0 B cells. Hard to be 100% without an MRI but it was strange. Maybe there is something to the CD20+ T cell theory? What do you think was going on?

    • This is the problem with continuous B cell treatment poor vaccine responses and risk of bacterial infections.

      Something in the CD20T cells theory….as a cynic probably the something in the theory is claptrap…but hapy to be proved wrong.

      Maybe get an MRI but (a) it shows that dosing every 6 months to keep B cells down is over kill however thanks fo your comment, it is well known that you can relapse with 0% detected B cells in the blood, it has been reported previously. However only 2% of your B cells are in the blood so the site of action of rituximab isprobably elsewhere

  • My upcoming Ocrelizumab treatment has been postponed because my B lymphocytes are 0.0.
    Am I able to fight a Covid-19 infection with these lymphocytes?

    • Fight the infection yes I think so..As we have been making the point it is you macrophages that are probably the key element follwoed by your CD8T cells and they should be fine. To fight it maximally, I suspect your B cell antibody making capacity is inhibited but the longer your treatment is delayed the longer there is time for the right B cells to recover and make a beter response. People who genetically have no B cells recovery from COVID-19.

  • Is there any point in considering treatment(for PPMS) with ocrelizumab or (off-label) cladribine, considering without current inflammation, even although the current eligibility states that there needs to be current inflammation?

  • Hi,

    I have a question regarding the diagnosis of, and the MRI findings in, PPMS.

    I understood from reading this blog that MS is one disease and not three (RRMS, SPMS, PPMS), and that one of the differences between PPMS and SPMS lies in people with PPMS not experiencing relapses before the disease becomes progressive. The disease remains subclinical until the brain can no longer compensate.
    I have read in some research papers that most people who are diagnosed with PPMS have lesions (visible on MRI) either on the brain and/or spinal cord. Lesions that are comparable to those of people with SPMS. This seems logical if MS is indeed one disease.

    But does this mean that if you start experiencing symptoms of PPMS (like progressive walking difficulty, bladder problems, vision problems, …) but the MRI of brain and spinal cord is clean; PPMS (the progressive part of MS) is excluded as a diagnosis?

    Kind regards,

        • Hi, the question is, is it possible/unlikely/excluded to enter the progressif part of MS (in a ppms scenario) without having lesions or atrophy on brain and spinal MRI? If all MS types are one disease with different clinical presentation, one would assume lesions to be present at the start of the progressif phase in ppms. With kind regards

  • Who said that summer will make SARS-CoV-2 less infectious?

    Not me 🙂

    Local climate unlikely to drive the early COVID-19 pandemic

    “We project that warmer or more humid climates will not slow the virus at the early stage of the pandemic,” said first author Rachel Baker, a postdoctoral research associate in the Princeton Environmental Institute (PEI). “We do see some influence of climate on the size and timing of the pandemic, but, in general, because there’s so much susceptibility in the population, the virus will spread quickly no matter the climate conditions.”

    The rapid spread of the virus in Brazil, Ecuador, Australia, and other nations in the tropics and the Southern Hemisphere—where the virus began during the summer season—provides some indication that warmer conditions will indeed do little to halt the pandemic, Baker said

    https://medicalxpress.com/news/2020-05-local-climate-early-covid-pandemic.html

    • Thanks I will need to do a post on tissue resident memory cells, on a quick scan it seems to contractive some other pathology work…this makes it difficult to understand whats going on

  • There are many pwMS who eat a gluten free diet. Do they feel better for cutting out gluten?

    I ask this as anxiety and depression have been reported in those that have a gluten sensitivity, when they eat gluten.

    I have been gluten free for many years but this week indulged some wheat food ( irresistible cakes and snack gifts! ). I have felt anxious today. I’ve not felt anxious previously for a long time.

    • Maybe we should let the Crick Institute sort it all out:-). Following this BBC-feed the self publicity is clear..Makes me jealous.. clearly they have shown that T cells are reduced by COVID-19…No need to read papers when you make any SH1 up that the media shallows. We knew about T cells being reduced before I knew anything about covid-19. Just as well I haven’t been watching the news. I kicked the tele to death after watching the Microsoft Teams TV advert a few times…You know the one about how it has made us innovate (University of Bologna). I think this a natural reaction rather than to puke at the Schmoltz, don’t you (Why do Computer companies do such Sh1 TV adverts?) or have I been locked down too long?

      Seems I’m not the only one
      https://www.entertainmentdaily.co.uk/tv/brits-slam-insufferable-microsoft-teams-advert/

      …..I was watching a presentation today of someone who had died with COVID 19 and the vascular pathology seems to be key.

      • Lol! So yeah, there’s a lot of us hating that advert! Could add a few more to the list from radio as well as tv.

        Will be most interested to hear what you find you meaningfully learn about Covid and as I swallow my daily probiotic I won’t assume this will be anything to do with the our guts 😆

    • As it is a monoclonal antibody and therefore essentially excluded by the blood;brain barrier (assuming of course that it is functional and not locally leaky) its usefulness in getting rid of B cells in the CNS is likely to be extremely limited. Its BTK inhibitors or similar you want for this as they get into the CNS.

  • Anti Ebv drug

    Four years ago, the U of U Health research team found that spironolactone, a medicine routinely used to treat heart failure, has an unexpected antiviral activity against EBV. They discovered the drug targets an EBV protein, called SM, that the Swaminathan lab and others previously showed is essential for EBV replication.

    https://medicalxpress.com/news/2020-05-epstein-barr-virus.html

    Ps; Men be carefull taking it ,you could turn into women (a bit more)

    🙂

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