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MouseDoctor

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  • omricon – b – cells vs t – cells
    i asked before but now with omricon i ask the same question again.
    assuming an cd20 depleted triple vaccinated person* (with elispot positiv t-cell test but no b- cell antibodies after 3 pfizer jabs) is now “better” protected individual compared to healthy control as the cd8+ response could be better in cd20 depleted persons and b-cell antibodies struggle with omricon (some weeks after booster).
    or do b-cells still work in some way?
    *no other comorbidities and IGA,IGM,IGG values in normal range

    • You are better protected with three jabs and four jabs but people are still getting infected and hopitalised but with no comodbidities you are likely to be OK if/when you catch it

  • Why does metyhprednisolone give such a huge energy boost if they are just removing inflamation ? Is there another mechanism at play ?

  • As mentioned previously, I really like your attitude towards that which is neuroprotectve. Any thoughts on the off-label use of anti-epileptics? Newer generations only as the side effects of older generations of this class were off-putting for many.

    • PS: for anyone else out there with both MS and EDS in the family, the Ehlers-Danlos Society is a particularly good source- it’s the one with the zebra logo. I’ve noticed it’s used by various denizens of Complex Musculoskeletal at OUH NHS Trust.

  • Hi, a few unrelated questions for this week, hope thats’s ok!

    Can you explain a bit about EBV and MS. Is viral load linked to rate of progression and relapses, and to overall prognosis? Following IRT does EBV remain latent in non-B/T cells and then reactivate?

    Is there a minimum time that it takes for a T2 lesion to become a T1 hypointense lesion/black hole? So you could predict that a person with a black hole(s) at diagnosis must have had the disease for x number of years?

    What do you think about MS screening in family members? An MRI scan for example every 5 years in families with multiple generations affected by MS.

    Many thanks

  • Why do Pharma companies conducting clinical trials have age cut-offs? I am 68 (not told by today’s standards!) and on a mobility scooter but I still have a brain to preserve, I can stand and I still have one hand that works perfectly well and one hand that struggles at times. It is difficult for me to propel my legs and my hands shake. Other than this I have no underlying health problems, slim build and very enthusiastic about preserving what mobility I still have.

  • I’ve had 3 cycles of ocrevus since Jul 20 but have paused next infusion which was due Jan 22. Last infusion was Jul 21.

    My 4th dose of Covid vaccine is due any time now but should I wait til spring when my B cells have chance to come back or go for the 4th vaccine as soon as I can even though it’s just 6 months since my last infusion and likely not to have B cells? Thank you.

  • Having just tested positive for the second time as an anti cd20 patient, is there a consensus on the best antiviral of the 3 available to tackle omicron please?

    • we know that antibody and the pfizer drug work if you get on it quick enough, I want to see more data on molnupiravir to pass judgement based on trial results

  • Thoughts on a fourth round on Lemtrada after a set back of an old spinal lesion flaring up, I JUST finished five days of 1000ml IV steroids which has (mostly) put the old lesion back to sleep. Thanks in advance.

    • No individual advice possible here, however delay since last alemtuzumab and presence/absence of anti-drug antibodies would be two of my considerations in clinic.

      • Thank you. I respect and understand that advice is not possible. I admire your articles and just wanted some terms/information/etc to look into before appointment with neurologist. I progressed on Tysabri and Rituxan before Lemtrada, after which I went from an EDSS score of 7 to a 2.5 within the first year. I enjoyed NEDA for first 3 years, then had old spinal lesions flare and did a 3rd round almost 2 years ago. Now after SAME issues flaring up (severe numbness and spasticity in right hand) thinking of round 4. Respect ALWAYS. Again, thank you!

    • Maybe a mess-up…omicron has loads new mutations and would be odd that a combination of delta and omicron appears like it is mating, buut it should be repeated by ow to know one way f the other

  • Of the three treatments available to MD patients who test positive for covid, is there a consensus on which one to request as an anti, cd20 patient please? 3 jabs, 2nd infection

  • I am in between the first and second week of my cladribine treatment on year one, and I just had the booster, but I am now worried: is there any chance that cladribine won’t work as well for me because I had the booster (which raises the lymphocyte count while cladribine reduces it)? Did I make a mistake by having it right in between the two first weeks?

    It was a bit of a rushed decision as I was worried for the omicron variant but now I am worried I might have compromised my treatment. I don’t mind for the vaccine not working as well but I do mind if cladribine doesn’t work as well because of this.

    Thank you beforehand for your opinion

      • Thank you very much for your response professor K. Even if there is no reported evidence is there any chance it could affect it on a ‘theoretical level’? (Based on the mechanisms of action of the two) Can I be fully reassured? Thanks again

  • No, it is not the place for questions. At least not for average, everyday folks looking for answers and some understanding as living with MS is difficult enough. No, this is only a place for questions from medical science students and professors to geek out on each other’s knowledge.

  • I’m fully functioning physically and mentally, not on any meds, no co-morbidities, but what about BVL? How is it measured (MRI? Well down here because I’m so well, I don’t qualify for one more than once a decade or so). I do lots of exercise and eat a very healthy diet with loads of fruit, veg, fish and I limit my diary to cheese and keep fat intake low. What else can I do and how do I know what BVL I already have? I think I’ve had MS for at least 33 years, possibly 54 years. I almost never go to the doctor, but I get the impression neurology has long since written me off as has research. Like Jane Black. She’s younger than me, but it feels as if everyone’s younger than me….

  • Hi MD, you mentioned virus release anti-interferons and by day 7 if virus is not cleared immune will be turned less active. – what happens next? Once in this less active state do we still clear virus? Is it by a combination of innate, antibodies and T-cells or mainly T-cells?

  • https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6563858/

    This article suggests that monthly steroid infusion in spms over a 2 year period, showed 17% improvement in edss and only a 7% progressiom and worsening in patients treated.

    Why has this not been looked into further ? Considering how cheap we are always told steroids are and how readily available they are, when compared to other available spms treatments this suggests steroids would be superior doesnt it ?

    • Thank you for this information. I will bring this up with my upcoming neurologist appointment. I consistently progressed while on Tysabri and Rituxan. I did Lemtrada four-ish years ago and actually improved (initial EDSS score of a 7 to a 2.5 in the first six months) BUT, I have had old spinal lesions “act up” and just did five days of 1000ml a day for 5 days of IV steroids. I did a third round of Lemtrada almost 2 years ago because of the spinal lesion (more or less) flaring up. I am thinking a round 4, but after reading the article you shared, thinking perhaps doing a monthly infusion might be the solution. Again, thank you for sharing. Rock on.

  • Hello MD, in the ocrelizumab phase 2 data is CD4/CD8 ratio reported? I observed that when B cells repopulated the ratio decreased. Before treatment my ratio was about 3, during treatment was steadily at 5.something and finally when I began to repopulate it decreased to 4.. it looks like the increase of B cells decreases the ratio. Do you have an explanation for this? Is this happening to all people or is it just me?
    Thanks a lot

    • yes the CD4/CD8 data is reported there is very little effect on thenso if there is a depletion it is rather transient. I personally think the CD20 T cell idea for why ocrelizumab works is desparatation from T cell imunologists, but they have to be mentioned because T cell immunologists control the literature

      • I agree with your view on the cd20+ T cells. Actually, I was not thinking of that kind of cells: the depletion of CD8 CD20+ T cells cannot result in a change of the CD4/CD8 ratio from 3 to 5, because this would mean that CD8 CD20 t cells are something like 30-40% of the CD8 cells and this is not in agreement with reported data where this subset is below 1%, if I remember well. So, there should be a mechanism for which the reappearance of B cells leads to a change in the T cell population. I was wondering if you have an idea about what is behind that. Additionally, if this is transient with time the ratio should come back to baseline and I am quite sure it will not get back to 3 with next ocz doses because it didn’t revert for more than one year.

        • in most cases the change is becuase the detection is based on percentages, as one goes up the ither goes down

          • The ratio is calculated as cells/ul / cells/ul, not as a range of percentages in my case. Data are provided as count and as percentage. In fact, if one looks as percentages every number is marked as out of range while most data reported as count are not.. except the cd19

    • Or more prosaically but not as “fundable” perhaps, is that pwMS can have leaky blood:brain barriers which can allow potential toxins in the blood to penetrate the CNS which would normally be excluded and may have little to to with the ultrasexy microbiome.

    • You know I am biased on this one, every disease is a problem of the MICROBIOME it seems asthma ms etc and so on both sides of the immune problem equation. So you want it both ways….Em

  • Hello,
    Just realised I posted this against the wrong date so adding here.
    There was a really interesting article about diet published on the blog in 2020.
    I wish I had cut and paste the content as it seems to have disappeared!
    This was the link:
    https://multiple-sclerosis-research.org/2020/10/dietspeak-is-there-an-ideal-ms-diet/
    It now takes you to a different article about pets!!!

    I would really like to get hold of the original article. Could you help please?
    Thanks
    Marianne

  • in the last couple of years since disease onset, my threshold for pins and needles is a lot lower. This is not the pins and needles sensation that goes with a relapse. I’m talking about legs raised, something resting on your arm etc. The kind of pins and needles that everyone feels but PWMS (or certainly me) feels more often. Why is this please? nerve loss? missfire?

  • Have you heard of many cases where the heart rate increases in the days after Pfizer booster? I’m noticing spikes in my heart rate (to 120 / min) when waking up at night and a also a higher than normal resting heart rate (82, with the usual being 61). Had my Pfizer last Friday… Would you be concerned in this situation?

  • I delayed my Rituximab infusion in hopes of getting a 4th shot, and thought I might take this opportunity to get the Shingrix vaccine since I’m approaching a certain age. Do you need B cells to get a good Shingrix response, or does it even matter in the long run?

    Out of curiosity I just did another antibody test along with my regular labs yesterday… I had tested negative for antibodies after 2 shots, and was still totally B cell depleted for my 3rd, but to my surprise my latest antibody test came up positive!

    • there you go….people are getting 4th jab if they were classed as immunosuppressed so hopefully it will be boosted

  • I’m sorry for the repeat question, but I’m wondering if you know if you need B cells to get a good response to the Shingrix vaccine? Mostly I am finding information about Shingrix’s effects on T cells so maybe the B cells aren’t even all that important in this case?

    • I kind of question why more MS patients aren’t just going ahead and self-medicating? It’s very easy to obtain drugs like combivir and acyclovir over the Internet without a prescription.

  • As an anti cd20 patient who has just tested positive for the 2nd time, can I ask – what is to prevent me from being affected in say 2 weeks time, once the current infection has cleared? I haven’t heard of this but without antibodies, I am just continually exposed to infection? Also, after my IV treatment today I was sent to a waiting room with 6 other positive patient, some who were coughing, sneezing etc. Chairs were side by side. I elected to stand in the cold for an hour outside the door instead. My logic was that I didn’t want to increase my viral load beyond what it is now, as I have had a fairly mild course so far. Is this flawed logic? Once infected. Does it really matter. Everyone else seemed happy to sit amongst the village of the damned

    • what is there to protect me….the T cells….from infection again….possibly nothing if you have no antibdy response.
      Keeping your viral load down is good so I dont blame you for your actions I was sat in a train carriage with some A holes and spent my time avodiing their breathe

  • Im wondering about If a pwms on anticd20 dmt has a co-worker or household member with covid, is it safe for the co-worker/ household member to rejoin office space/ main area of house after the passage of 5 days of onset of symptoms? What if before returning, the covid infected individual self directs an antigen test or chooses to wear 1 ply cloth mask, does that make it safer for pwms in proximity ? https://www.houstonchronicle.com/news/houston-texas/education/article/Houston-area-schools-revise-plans-as-they-resume-16752657.php

    • In the UK
      The self-isolation period for people who test positive for Covid-19 is being cut to five full days in England, Health Secretary
      People will be able to leave isolation after negative lateral flow tests on days five and six.
      So self testing explicit

      In the US wearing masks also seem to be explicit

      https://www.cdc.gov/media/releases/2021/s1227-isolation-quarantine-guidance.html
      Given what we currently know about COVID-19 and the Omicron variant, CDC is shortening the recommended time for isolation for the public. People with COVID-19 should isolate for 5 days and if they are asymptomatic or their symptoms are resolving (without fever for 24 hours), follow that by 5 days of wearing a mask when around others to minimize the risk of infecting people they encounter. The change is motivated by science demonstrating that the majority of SARS-CoV-2 transmission occurs early in the course of illness, generally in the 1-2 days prior to onset of symptoms and the 2-3 days after.

      Alternatively, if a 5-day quarantine is not feasible, it is imperative that an exposed person wear a well-fitting mask at all times when around others for 10 days after exposure. Individuals who have received their booster shot do not need to quarantine following an exposure, but should wear a mask for 10 days after the exposure. For all those exposed, best practice would also include a test for SARS-CoV-2 at day 5 after exposure. If symptoms occur, individuals should immediately quarantine until a negative test confirms symptoms are not attributable to COVID-19.

      • Grateful for your insight. Thank you. I hope it keeps schools open and omicron is peaking. Data and conditions from my area on reduced 5 day isolation effect may be instructive in retrospective review.

  • How often does dysfunctional breathing happen in MS? Is there a way to differentiate between MS induced DB and other causes? For e.g. if it’s persistent when sleeping or lying then more likely to be MS, but if stops during exercise then unlikely to be MS?

  • Dear Mousedoctor,
    Think it probably best if I retreat to my cage- obviously no good at this blogging lark. Will continue to lurk, and mine data to fuel the parallel processor in own brains, just as I do with other potentially relevant sites.
    My best guesses for management of myself and afflicted descendants seem to maintain a pretty high accuracy rate. I have picked up some useful information re axonal neuroprotection, which is highly relevant to my current situation.
    In addition, I have to keep pain meds down in order to ensure a suitable level of alertness for being sole carer to an elderly by anyone’s standards husband with AML and multiple comorbidities on palliative care chemo, which is pretty exhausting.
    All I know for certain is that I have a firm and enduring diagnosis of collagen disease/disorder. For info, all research funding for EDS is going on autosomal recessive forms as they’re easier to find. That leaves we autosomal dominant types pretty much back where we started.
    The anonymous physicist who couldn’t resist did make me laugh aloud this morning, so thank the god of small things for small favours, even if I am an agnostic.
    Thanks for your tolerance, and apologies for the entomological infestation!
    Best regards,
    P

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