Q&A August 2020

Q

For those reading on 1 August. Happy Yorkshire Day

Gods Own Country

You know the the drill if you have a question unrelated to the threads. This is the place for you

About the author

MouseDoctor

67 comments

  • Well a’ll gu to foot er ah stairs… I didn’t know you were a Yorkshire man, MD.. Happy Yorkshire Day back at thi, me owd cocker! 🤣

  • JOIN ACTRIMS/ECTRIMS round the corner. Anything exciting to look forward too in pandemic causing misery at biblical proportions across the world. Like we have cure ms it was staring as in face all the time. Or should we rename the acronyms ACTRIMS/ECTRIMS to Consortium for Trade related investment measures.

  • Vaccines trials with pwms
    Is there a strategy to test any future covid vaccine on people with ms and specifically people on particular dmts?
    Or will they just be wrapped up with all the ‘routine’ studies/trials etc
    is there a plan?

  • Hi,

    I have no idea if this is a relevant question for this thread.
    Sorry if it is not and or if it is already answered elsewhere.

    Does unconjugated bilirubin, in case of hyperbilirubinemia, get into the adult brain/CNS or not?
    And if it does is it considered neuroprotective or neurotoxic?

    Thank you,

    With kind regards,

  • Hi
    Do you think there is any potential future benefit of cord blood banking? I’m currently pregnant and have just started researching whether it’s worth paying a couple of grand to do this in case things might develop this way in the future. Would appreciate your thoughts
    Thanks 😊

    • A load have people did this as it could a future source of stem cells for their children…..the companies doing.this have probably long since folded and the cells have thawed and been thrown in the bin, but you can make stem cells from any cells now.

  • Hi Mouse Doctor.

    I read your last post about memory B cells. I am pretty new on the blog. Can you explain to me your theory on memory B cells ? If I understand well to your mind B cells are the key target to keep MS at bay because they are driving the immune attacks ? So for you T cells only obey to the messages send by memory B cells that are infected by EBV ?

    If I understand well how your theory fits with the Prof G ´s idea of smouldering ms ? And if your therory is true why ocrelizumab are not better at reducing BVL in comparision with Alem ? Do you think BVL data would be different if OPERA would have been made 2 years after diag like for Alem ?

    Thanks in advance.

  • Is there a general “feeling” (if such a thing be allowed in science), that MS is a retrovirus, and therefore -as perceived by this patient -a malign for ce , changing its shape like the T 1000 robot in Terminator 2 ?

  • 1. Why are so many MS research teams across the world focusing all their time on Covid 19 to the detriment of research into MS (the real MS)? I’ll take my chances with Covid 19, I have no chance with MS given it’s progressive from the outset (unless a therapy to tackle smouldering MS comes to market).

    2. Where is Prof G?

    • 1) There is a judgement in your question I don’t necessarily share, i.e. that research into Covid-19 must be to the detriment of “the real” MS research. However, there has been (and still is) an urgent need to establish whether pwMS are exposed to greater risk, particularly with DMT. The evidence so far suggests that most DMTs are relatively safe, so teams can refocus on their core activity, which is how to understand and best treat MS (in a Covid-19 era).
      2) On holiday.

      • Thanks Prof K. As a non-scientist / researcher, it just appears that thousands of MS / Covid 19 papers are being published (often relating to tiny numbers eg 2 Alemtuzumab patients with Covid 19) and many seem to be published to (i) increase the publication list of an academic or (ii) allow an academic to show their knowledge of the immune response to viruses. Maybe I’ll be proved wrong and they’ll be some interesting MS work presented At ECTRIMS / ACTRIMS. Good luck with your research and trials.

        • You are wrong here the fact that someone developed covid 19 one week after alemtuzumab is highly informative as this person has no t or B cells yet they recovered in a week. Therefore these case studies can be highly.informative as it shows that peripheral blood T and B cells are not needed for recovery

          • Thousands of papers…..(1) about (
            100 papers and a (ii) fraction are from scientists… Are you having a dig again….it’s endless.

          • So, what’s the hypothesis? Cells migrate from the thymus Asia bone to fight the disease? Or innate immunity is somehow able to provide protection?

  • Hello, could you tell me if lesions caused by migraines enhance with contrast or is it only ms lesions that enhance. Is there also a connection between migraine and ms. Thanks

  • Hi,
    Is there there a link between recurrent lung infections and multiple slerosis other than aspiration pneumonia? I mean is there any immunological link?
    Thank you,

  • A Tysabri and Covid question, please. How should an individual weigh up the risks and benefits of switching to 6-weekly dosing (for Covid risk-management purposes) or sticking with the tried-and-tested 4-weekly? What factors should he/she take into account? And how good is the evidence basis for these decisions at an individual level?

  • If energetic stress can induce degeneration is it possible that overheating increasing energy needs of neurons has the same effect in the long term?

    Why many clinical trials start/end late with respect to plans or are not updated after planned completion date?

    Thanks

  • Happy Yorkshire Day MD, from a Yorkshire lass!

    Is there any other data released yet re anti CD20 and COVID-19 (related to death, as I think we have established risk is higher)

    Thanks!

    • In the cohort we found there were 5 deaths in over 400 cases and most of those had covid risk factors such as age etc.

      • Thanks.

        If someone was to consider delaying their next infusion of ocrelizumab (due in sept, would like to get winter over with before second full dose) – would you say having a blood test to measure B cell levels would be helpful or not?

          • Because I am a healthcare worker and as I understood it, I am (slightly) at less risk of covid currently 5 months since my last infusion. If I went ahead with my next I would be at higher risk at work and potentially have to ‘shield’ after the steroids etc. So basically I would delay as currently ocrevus isn’t particularly compatible with my work and covid risk.

            Oh and also I thought I had read on here that delaying does not adversely affect my MS as the effects last longer than 6/12?
            Perhaps I have got that wrong.

  • Another Ocrevus related question here from a fellow Yorkshireman. There’s been a lot of posts lately about the real MS, smouldering MS etc and the effectiveness of alem and HSCT in relation to Ocrevus. In some cases, they are being considered a potential ‘cure’. Is it the case that Ocrevus as a ‘maintenance therapy’ does not have the same potential in addressing the real MS? Happen us Ocrevus folks were to shift on to that there alem in’t future, are we at a disadvantage from playing the B side first?

    • Smouldering MS as I understand it would not be touched by alemtuzumab or HSCT so ocrelizumab may not be different. The study needs to be done

      • If smouldering MS was not addessed by alemtuzumab or HSCT, how could they end up with no disease progression over 10 years for a substantial share of patients (I assume we believe most if not all have smouldering MS in some degree)?

        • Because they are highly active at stopping the peripheral immune response causing damage in the CNS and stopping smoldering MS

  • Exercising is mentioned on this blog as benifitial for people with progressive form of MS. Is there any information about the intensity of this exercises? Does your heartbeat need to be elevated for 30 minutes daily to be succesfilm? What’s best? Are there any advices or guidelines?

    • I was diagnosed ppMS 8 years ago at age 55 and have since endeavoured to maintain an exercise regime of 200 km/ week on a traditional road bike. This involves an average of 2 hours/day on uneven terrain 5 days/week. I try to ensure that I develop substantial perspiration and get out-of-breath several times on each ride. I no longer use a heart monitor unfortunately so am unable to give any definitive data.
      The medics who monitor and know my condition hold me up as an example of a pwMS who is slowing his progression.

      • Some ppms happen to have a very slow progression..am sure some like you exercise and some do not. So to attribute your slow progression to exercise is maybe a “feel good” story..just because your exercise feels good does not mean it affects your ppms.

  • When discussing the increased longterm cancer risk among MS patients treated with immunosuppressant drugs, ProfG recently made an interesting comparison with a treatment for rheumatoid arthritis that has been around since the 80´s with similar depletion effects however an insignificant increased rate of malignancies.
    Unfortunately, I can‘t find this post any longer. Could you please jog my memory as to which drug he was referring to? Thanks!

  • Do you have any sort of roadmap for how to transition away from rituximab?
    After several years and over 10 rounds of treatment

    We try to increase the gaps between cycles
    Between cycles, the MS seems to disappear
    But the re-dosing eventually becomes necessary

    The IgG levels fall lower with each cycle

    How to transition, and to what?
    Is cladribine an option?
    Or alemtuzumab or HSCT?

    The question has become more pressing because of the pandemic

    • Don’t worry it will be there next year….but it’s been Yorkshire Day for the past two weeks, Leeds promoted last week and Harrogate Town today….what next? Chelsea to get a thumping in the champions League… 🙂

  • The possibility/desirability of my coming off fingolimod (to cladribine) has been discussed but I forgot to ask about the ‘exit strategy’. I am very, very worried about the prospect of the washout effects on my MS (had a mild version when transitioning from copaxone so am guessing at massive impact with fingo). Is there anything that can mitigate the effects?

  • I’m m not an native English speaker so, not sure what you meant. But what I know for sure is that mostly of my relapses ocured after gastro intestinal disturbances or antibiotics use, so I could not wondering if is any known connection. Thank you .

  • Hello,
    My wife has ppms with typical leasons in brain and spinal cord plus typicial liquor bands.
    Additionally she has positive MOG-antibodies.

    Sadly the neurologist does not know, what that means.
    1)Although I dont expect an advice on a personal case. But maybe you can explain in general, what you know about mog-antibodies and ms.
    2) Secondly would you expect, that with ocrevus, the MOG-antibodies should also disappear, because of the b-cell-depletion?
    Thanks a lot.

    • Dont hold your breathe…in the news item they say they want an inhibitor of the enzyme, inhihibt the enzyme and you have all sorts of neural defects add to this the protein is expressed outside of the nerves such as the immune system you will have unwanted side effects and for the drug to work it has to get into the brain and then the right cell….This is not an easy thing to do, so it is another “cure of the week” that is probably a million miles away from human treatment

  • Hello Mouse Dr.

    I have been following relevant postings concerning various DMT’s (specifically Ocrevus) and “vaccine readiness” for covid 19. There is a lot going on with facts running about, all over the place. But in all honesty, these facts usually leave me confused and without certainty as to a “final answer”.
    Simply- can you tell me, if one is 170 lbs and 62 years old, and had their first two half infusions (300 mg) of ocrelizumab, followed 6 months later (mid-September 2019) with a last standard 600 mg infusion, how long would it take their immune system to “rebound” to “normal” (all other things being standard, normal, “middle of the road” average), so they were “vaccine ready”?
    On a related ethical note, I was watching (here in “Trump-land”), a network special on the unfolding of the Covid pandemic. One of the commercials was for Ocrevus! I couldn’t believe they paired it with this special, and failed to mention anything about vaccine concerns. Given the covid programming, one with MS would almost have to assume that the advertiser would have said something if there were a concern. I found it very unnerving and crass. Or maybe I’m making too much of it.
    In any event, I look forward to your estimate on vaccine readiness for the situation mentioned above.
    Thanks, Tom

  • I am late for the August Q&A but I was just too curious. I came across some papers on complement inhibitors… what is your position about complement inhibitors in MS? Small and large molecules… could they affective an effect on smouldering MS in your opinion?
    Thank you!!!

By MouseDoctor

Translate

Categories

Recent Posts

Recent Comments

Archives