Q&A December

Q

This month it is Thailand day so we have the Siamese fighting Fish

This is the count down to a new year and change…..

Sculptures from the East End of London

In the New Year this will appear Weekly such that the threads are manageable

Disclaimer: Please note that the opinions expressed here are those of the author and do not reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust or Queen Mary Univeristy of London.

About the author

MouseDoctor

137 comments

    • I ran out of mouse pictures as they closed the House of Mouse, maybe I should recycle an old one. Call it count.down for change

      • Those mouse puppet things gave me the creeps. A bit Jimmy Savilish.. Please keep them locked away in the shoebox under your bed.

          • Clowns, mime artists and Father Christmases in little grottos should all be prohibited from being near children. Finger bobs was a bit odd, but the presenter died last month so I won’t say anything more. Bagpuss was my favourite – no adult involved.

          • Ah, Rick Jones RIP. Was privileged to see him performing in his band Meal Ticket waaaaay back when. he was quite a character.
            Bagpuss good, though I lean more to the Clangers, all pretty hallucinogenic…………….

  • Still waiting for anti-cd20 treated vaccinated (but seronegative) data?
    If the data looks bad, do you think that will be the end of anti-cd20 as a go-to treatment for multiple sclerosis?

      • I search ‘The MS blog’ or Barts MS blog’, as I’ve always done and nothing shows up

        I have to scroll down until I find an old archived blog post to bring up the blog.

        Maybe it’s just me

        • You could google “Barts MS research blog” or “MS research blog” and this site pops up without scrolling, if you wish. At least it does for me.

          For thousands of years explorers and adventurers searched for a mythical spring which allegedly restored those who partook of it, the Fountain of Youth, of course.

          The good news is that there is a spring not residing in myth which actually can refresh quailities of health and healing. This spring is called knowledge. Is there another MS site in all the world which has revealed and dispersed information critical to the well-being of people with MS like this site? Not even close.

          For me and my dear, dear loved ones dealing with MS, this site has accomplished more practical good through dissemination of information than I can describe here. I say that with no hyperbole whatsoever.

          Pertaining to health, the Fountain of Youth is myth but the fountain of knowledge is reality. This site is like a fountain where people supplying it act as water dispersing the only real healing power I have discovered… knowledge and the practical application of it.

    • It used to come up near the top on my phone if I typed ‘ms research blog’ but now it doesn’t come up at all, something has changed. The bookmark on my laptop still goes to it ok though.

  • Dear Team
    I skipped the infusion of Ocrevus in September and got vaccinated for the third time instead. CD19/20 cells are repopulating (about 4% a month ago).
    I just got my antibody test result. The level is 29.7 BAU/ml. It’s not much but considered as positiv.
    I know it is still unclear what level is sufficient.
    Nevertheless, I wonder if this is enough. What do you think?
    Thanks for your work!

    • The paer by Khoury looks at levels and protection and this depends on the variant you are infected with. However now that you have a response you can boost it with a booster dose

      • I asked in the hospital for a fourth /booster shot. They told me that I should wait because there is a risk of relapses. I was surprised about that statement. I thought there should be no trouble with this kind of vaccination.

        Is there a any vaccination limit in terms of time intervall and frequency?
        I mean I personally would get vaccinated 7 times or more if necessary….

  • This maybe one for the neuros if they would be so kind to answer.

    Patients with PPMS who are on Ocrevus, are there some patients who haven’t seen their MS progress since starting Ocrevus?

  • Regarding ATA188…will you share your top, maybe, 3 reasons for a more restrained enthusiasm than is being currently expressed by some? I will also accept your top 2 reasons if three is really just asking too much at this time. Sharing but one reason will be somewhat unsatisfying. Lack of response altogether may hurt my feelings…

    • I have yet to see the data published so it is very difficult to comment. In terms of enthusiasm if you have removed the root cause the question one asks are the effects being reports of sufficent magnitude. Are people being cured? One may also as has optimal treatment regmine been established

  • Hello,

    I’ve just started a 3rd year of Mavenclad. IThe decision was not based on definitive progression or new lesions on review, but based on some emerging evidence, suggested by neurologist, that a third year could have added potential benefit. I also wanted to to do it and understand the risks. My question is about how string the evidence is for an additional third year and whether (I know we could need a crystal ball) you think there could be a significant benefit based on the research we have? Are there any papers I can read on this that you know of? I’be be really happy if there is any additive effect and it helps me save more of my brain and spinal cord. Thank you.

    • Evert time you take he drug it will clear out lymphocytes hopefully not to an extent that you get very very low levels. I am not sure what evidence this is based on

  • If 100 percent of people with MS have EBV anti bodies.

    Are there any other viruses that are 100 percent present in people with MS?

  • Is there any data on Covid re-infection in people on Ocrelizumab who already went through natural infection without developing detectable antibodies? And infection in people on Ocrelizumab who are vaccinated? I guess this is the most important and useful info Ocrelizumabers should all look at in this moment. Thanks

  • antiCD20 as IRT – I have seen suggestions that after 2 years of treatment, the next 18 months up to 24 months would be relatively low risk with disease progression.

    And I have also seen suggestions the 4 years after two courses Cladribine would be relatively low risk as well.

    From what I gathered, the 4 years of Cladribine is from actual follow-up whereas the 18-24months is a conservative assumption based on B-cell repopulation. Would it be possible to translate Cladribine’s 4 years to antiCD20’s based on B-cell subsets repopulation with follow-up findings?

    • Good point I think a study needs to be done but there is resistance. The company won’t do it although they should and in that way they can control the data. Some neurologists won’t accept the risk of a delay but they would use cladribine Go figure. The NHS should fund it as it will save millions doing it.

  • Any thoughts on this paper with respect to Rituximab’s outcomes? Seems to contradict what we see in MS, at least according to what we read here and my MS doc. Associations of baseline use of biologic or targeted synthetic DMARDs with COVID-19 severity in rheumatoid arthritis: Results from the COVID-19 Global Rheumatology Alliance physician registry / https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8172266/

  • What’s the most impressive piece of research you’ve seen this year that looks like it may make a difference to the world of MS?

    • My last paper:-)
      Impressive work….is such a personal view. ProfG used to give his round up of the year but that is not going to happen this year. As you realise I am glass half-empty

  • I am really trying to find an answer, and it seems nearly impossible as everywhere I look it’s avoided or skimmed over. Is there any way to tell the difference between myelin damage and nerve fiber damage?

    • Yes if there is meylin damage in the optic nerve you can use eletrophysiology to show this. You stimulate via the eye and record from the brain. With demyelination the signal is delayed, with nerve loss the intensity of the signal is reduce

  • Any thoughts or insights on Myelocortical MS? In particular, patients with Myelocortical MS who are refractory to the current immunosuppressant DMT approach.

    https://consultqd.clevelandclinic.org/myelocortical-multiple-sclerosis-neurodegeneration-without-white-matter-demyelination/amp/

    I understand the above referenced study was done on donated brains; however, I believe additional analysis was performed and certain “trends” emerged.

    Scary stuff considering there is nothing they can do to treat or slow down this type of MS. If it even is MS 🧐

    • I suspect the lesions are elsewhere and they are looking at a die back phenomenon so the lesion may be in the spinal cord and the nerve terminals are in the brain where it all looks normal. So it is like cluedo the body is in the hallway but the murder occurred in the kitchen where the chicken bone was stuck in the throat. How do we say it is refractory to current treatment, maybe they have to apply something else and earlier.

      • Thanks for the response MD1. Seems like you are pulling double and triple blog duty these days. Much appreciated.

        I agree the lesions might be elsewhere but without getting access to a 7T research MRI, not sure the current technology can find these elusive lesions.

        I remember the game of Clue, this situation is more like the game where you put on a blindfold, spin around in circles, then try to run a straight line….a complete sh1 show!

        Refractory…..three highly effective DMTs in the same amount of years after the first and only relapse. Can’t get any earlier than that. No new lesions or relapses, just a quick decline. Maybe using Clad at first sign of CIS would have been earlier.

        So an individual can have just one really bad lesion in the right (wrong) place and be considered primary progressive. Just seems like there is more at play than a few smoldering cervical lesions.

        I was given the age old….“no more we can do for you at this time” 😕 classic

        • I have been pulling double triple blog duties for years and with prof G and others gone, something has to change because trouble happens when we are struggling for content. I have agreed to keep it going at this level until Christmas.

  • anti-CD20’s and rabies vaccine – how much rabies vaccine is dependent on antibody response? Would people on anti-CD20’s in higher risk of not mounting an immune response before rabies take over the CNS?

  • Any thoughts in the best DMT option for 41 year old female, previously stable on DMF, currently on copaxone for family planning but had a relapse (2 brain lesions and 1 cervical spine) in October. Smear test shows no abnormal cells but positive for high risk hpv. First time hpv has been tested so no idea if a short term re-activation or persistent infection. High jc+. Neuro team were keen on ocrevus but now the options are unclear.

      • Here’s a different angle, there’s potentially an association between DMF and a reduction in CD8+ lymphocytes. From what I can gather, these CD8+ are needed to clear a HPV infection? By that logic, could long-term DMF cause reactivation of HPV and prevent its clearance?

        • The lymphopenia with CD8 is occurs with DMF however you will get an antibody response against HPV to help its clearance I suspect

    • Hpv

      Its a sticky virus keep doing those smears ,

      Sometimes the immune system clar the virus

      Have you had the hpv vaccine?

  • immune privilege?

    Forget it

    Immune cells could be doing much more than we think in protecting our eyes

    nterestingly, they also found that even after uveitis begins to resolve at day 26 and the majority of immune cells were gone, there were still some that remained integrated on the surface of the lens capsule (second and third panels, below) and infiltrated into the lens tissue itself (first panel, below).

    “Why are these cells sticking around? Are they providing some continued surveillance, or could they predispose the eye to future inflammation?” asks Dr. Menko. “And what is the ultimate fate of these cells?” These questions form the foundation of future studies for the Menko lab, and the answers to them could reveal important new roles of immune cells in the eye. Importantly, their work thus far underscores that the presence of immune cells in the eye is much more complex than previously thought.

    Sounds familiar?

    https://medicalxpress.com/news/2021-12-immune-cells-eyes.html

  • Hello MD- (This comes after your Andromeda Post): I love being inadvertently, and an unapproved, long distance, recipient of your postings with technical knowledge usually far beyond me, but often with a subdued but evident sense of humor. The emails have unofficially become part of my psychosocial therapy that I look forward to. Merry Holidays and thanks for allowing me to read all the hard work. I really appreciate it.

  • Myelin basic proteins – I never really understood, if adaptive immune wasn’t mounting a response to the myelin proteins, how did myelin become the victim?

    And if it is not myelin basic protein, our immune is still targeting at something but different from person to person? Would it be possible then to find a basket of proteins, which covers say 80% of pwMS, and turn the response off for this basket as a treatment?

    Also is it possible to replace CSF?

    • Myelin basic protein is easy to purify and water soluble so good for doing T cell assays.
      There are loads of proteins responded to it is possible to turn them all off but you need to use whole brain protein with mad cow disease this is proably not going to happen. You have to find the chief regulator, I could make the case this has been done but it didnt work, sadly in my view the approach used was not going to work and so the idea has now been tainted and unlikely to be done again:-(
      Replace CSF…you constantly replace CSF

  • Question (another covid one) 🙁

    So everybody talk about :seroconversion ,antibodies in the blood etc

    I reckon most of this test are looking into Igg antibodies

    But wait, this is a respiratory virus that enters your system thru the nasopharynx upper respiratory tract

    So does anyone ever looks at Iga antibodies ?

    Why are people only looking into the blood for Igg?

    It seems to me that if you want to block infection you need to block it at the gates…And thats where you kfind Iga

    The amount of IgA produced in association with mucosal membranes is greater than all other types of antibody combined.[3] In absolute terms, between three and five grams are secreted into the intestinal lumen each day

    https://en.wikipedia.org/wiki/Immunoglobulin_A

    Role of IgA versus IgG in the Control of Influenza Viral Infection in the Murine Respiratory Tract

    Only pIgA was found to prevent virally induced pathology in the upper RT, suggesting that IgG did not prevent viral infection of the nose

    but neutralized newly replicated virus after infection had been initiated. In contrast, IgG, but not pIgA, was found to prevent viral pathology in the murine lung. Our results help to resolve the controversy of IgA- vs IgG-mediated protection of the RT; both Abs are important, with plasma IgG Ab serving as the back-up for secretory IgA-mediated protection in the nasal compartment, and IgG being the dominant Ab in protection of the lung.

    https://www.jimmunol.org/content/173/3/1978

    • IgA levels, neutralization, and complement are key in the upper respiratory tract

      Upper respiratory control was associated with virus-specific IgA levels, neutralization, and complement activity, whereas lower respiratory control was associated with Fc-mediated effector mechanisms. These findings provide critical compartment-specific insights toward the rational development of future vaccines.

      Upper and lower respiratory tract correlates of protection against respiratory syncytial virus following vaccination of nonhuman primates

      https://www.sciencedirect.com/science/article/abs/pii/S1931312821005126?via%3Dihub

    • “The temporal relationship between vaccine administrations may suggest the inflammatory reaction to the vaccine might have triggered a first clinical event in individuals with pre-clinical MS. Alternatively, the occurrence of these cases may represent a spurious association given a combination of a common event, namely vaccination with mRNA COVID-19 vaccines” other cases show MRI presence of old lesions indicateing MS before vaccination. Whilst I accept this may occur it is likely to occur at a low frequency. I seem to remeber there were about only a hanful of relapses out of 10,000 vaccinated in Israel

  • “The earlier the treatment is started for MS, the less disease burden a patient will have and the better their quality of life will be,” Davis said. “Prevention is key. If we can find out how many genetic variants a person has for potential onset, we can get them quicker treatment

    Higher genetic risk for multiple sclerosis means earlier onset of the disease

    https://medicalxpress.com/news/2021-12-higher-genetic-multiple-sclerosis-earlier.html

    • I think the comment regarding prevention is over egging the reality….There is no MS gene and all the variants are potentially part of a normal repertoire, they come together in a way that gives you risk but none of the gene variants is asbolutely necessary and the fact that 70% of people with identical genes in a twin don’t get MS means you would be treating 70% of people that wont get MS. However, I agree that there are predisposing genes which will give you risk and therefore you should keep an eye out, but until there is an easy way to induce prevention

  • Literally, no entity on earth has provided more practical information toward improving QOL for PwMS than this site. Whether hundreds or thousands visit here I do not know but what I am certain of is that information posted here by contributors gets multiplied in ways and numbers contributors cannot imagine and effects more good than they could dream, literally.

  • Just recovered from Covid. MS nurse said should have some antibodies now.
    What is the situation with catching it again, on Ocrevus? Vaccines didn’t work.
    I read on gov website they think there is at least 90day immunity once catching covid, but there is stuff in there about immunocompromised patients, not sure if it’s the same for us? How careful should I be to NOT catch it again? Is it unlikely for at least 90 days?!

    • Having a natural infection means you have a broader immunity which willl help you when and if you get infected again. Just as anti-CD20 stops the vaccine B ell response it will stop the infection related B cell response too…..so you may not have antibodies and if you dont you can get omicron infection. But the T cell response will get rid of this variant if it got rid of delta. You could always do a Barts Blood spot. I know of people beig boosted first days of december and infected with omicron by week three of december. The T cell response will be reved up for a while. Glad you recovered well

    • If you recover thats mean a lot about your immunity status

      If its the t the b or the antibodies what maters is that your immunity response gets you out of covid

      Stay strong

  • A question for everybody I guess.

    Since I am on anti cd20, Ocrelizumab in my case, I’m facing a lot of difficulties.

    I have tinea pedis.
    Several warts.
    Sinusitis

    Do you think that this can be caused by the anti cd20?

    Are there more of you out there who have similar or different of these difficulties like the ones I described, since beiing on anti cd20?

    Is there anything written about this in the medical papers?

    • it is possible
      there are case reports of treatment resistant athletes foot so hope it responds to anti-fungals
      https://2021abstracts.cmscscholar.org/2021/10/25/treatment-resistant-tinea-corporis-in-multiple-sclerosis-patients-treated-with-ocrelizumab/

      This came from a report on rituximab in arthritis
      “Single cases of the following fungal infections were reported (as described in the safety report): fungal infection, sinusitis due to fungal infestation, tinea corporis, tinea pedis, dermal fungal infection, gastointestinal candidosis, oral candidosis, vaginal candidosis and vulvovaginal fungal infection”

        • Yes, if dr oks, try simple nedipot for flushing out sinus. A little strange but works. Be sure to use distilled water, not tap. For towels, socks, and undergarments I wash on “sanitary” cycle, essentially high heat. Good luck.

          • Thanks for your reply. I know how to manage all of the above, it’s just that I tried to get some info if more of us have similar things.

            And MD is always superfast in passing on links to papers.

        • I developed Psoriasis, Delayed Pressure Urticaria and Eczema since Ocrelizumab, it was very bothering me at first getting over the MS diagnosis and having more stuff poping up everyday. My skin anomalies are somewhat under control with Narrowband UVB I take everyother day.

          Ocrelizumab might not be the only contributing factor but feels like my skin picks up new problems every OCR cycle. CD20 T-cells?..

          • Sorry to hear this but it fundementally indicates that the mechanisms of these are different or you ocrelizumab is not working because there are papers of anti-CD20 inhibiting utricaria, eczema and for psoriasis there are mixed info

            “The association between B-cell depletion and the evolvement or exacerbation of psoriatic rash has been described but is not common. Such autoimmune phenomena are hypothesized to be due to the development of human antibodies and the induction of immune-mediated skin lesions such as a psoriasiform rash [3–11]. So is the drug working and you are still B cell depleting but also
            Arthritis Rheum . 2007 Aug;56(8):2715-8. doi: 10.1002/art.22811. Development of psoriasis after B cell depletion with rituximab importantly

            Darwin E, Romanelli P, Lev-Tov H. Ocrelizumab-induced psoriasiform dermatitis in a patient with multiple sclerosis. Dermatol Online J. 2018 Jul 15;24(7):13030/qt220859qb. PMID: 30261571.
            https://escholarship.org/content/qt220859qb/qt220859qb_noSplash_ba29d11959bc004faaaf1c90478cddd0.pdf?t=pgn2a2

            Geills et al. 2019 CSR11 – Psoriasis Flare during Ocrelizumab Therapy for Relapsing Multiple Sclerosis: Report of 2 Cases

  • Hi, i have a question that isn’t related to MS, it is more of a curiosity: What would happen, if anything, if you received the vaccine while COVID positive? I’m mainly thinking of someone who’s asymptomatic and doesn’t know he infected at the time of vaccination. Thanks, have a nice day

      • I wonder, we know many cases of people who died of Covid and had just gotten vaccinated. We blame Covid and say that the vaccine didnt have time to take action, but is there any study to actually look if the vaccine could cause a immune system “overload” or drive some other process that could lead to worse outcomes of the Covid infection? I dont think there is.

        • In the first week of the pfizer vaccine the old aged were dropping like flies in Norway..I think there were thirty deaths in the first week. It didnt make the news here as that would have been dirt on both vaccine

  • If one seroconverted a Covid vax a few months ago, is the following true: a booster should boost existing covid immune response regardless of the timing of infusions of Ocrevus because it is the plasma cells that are boosted and these plasma cells are essentially unaffected by Ocrevus? In other words, if OCR is dripping in my vein now and I get a booster, say, next week…good maybe?

    • Yes if you made a response last time a booster should boost but i would not say regardless of the timing of the infusion. but plasma cells should not be affeccted

  • There’s speculative talk here of possibly trying convalescent plasma again to treat Covid infection. If a pwms gets high titter convalescent plasma for Covid antibodies, what are possible negative effects with re to MS or how it impacts an anticd20 DMT? I couldn’t find this searching early posts, I apologize if you’ve addressed this before.

  • Just wanted to say thanks MD, it has been another tough year for all of us, in many different ways. However, your excellent critical analysis of topics from Covid to BTK inhibitors and other MS things is greatly appreciated. Merry Christmas and Happy New Year. Stay safe!

  • MD you’ve been a superstar this year – Blog posts on 💪🏼
    Wishing you and the rest of the Blog team as relaxing and enjoyable a festive break as possible.
    Here’s to a better 2022 around the world!

  • Antibodies against self

    COVID-19 can trigger self-attacking antibodies, even in mild or asymptomatic cases

    All those with confirmed SARS-CoV-2 infection had elevated levels of autoantibodies. Some of the autoantibodies also have been found in people with diseases in which the immune system attacks its own healthy cells, such as lupus and rheumatoid arthritis.

    unvaccinated people

    https://medicalxpress.com/news/2021-12-covid-trigger-self-attacking-antibodies-mild.html

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