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MouseDoctor

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  • Good morning,

    Seeking some advice. Diagnosed 10 years ago, no major relapses for some years, little active evidence under MRI but very conscious of cognitive decline. Body can’t take Tecfidera nor Ocrelizumab so am stuck for effective DMT. Would like HSCT since it seems irrational to not hit pause whilst function is as it is instead of waiting for things to decline and hit pause later. Declined as cognitive decline not a NICE measure so told wait for a proper physical relapse and can then revisit (albeit still no guarantees of getting on it).

    Doing best with IF and 3-5 day fasts every other month. Hate that I’m effectively waiting for something physical to go wrong so I can try again for HSCT, whilst cognition decline is ignored. Are there any other effective DMTs you’d advise, any trials you’d suggest, anything that would help future pwms with cognitive decline get recognition? Thanks!

  • Is there a decent self administered depression scale that actually works in MS? HAM-D etc are much too reliant on physical symptoms…

  • booster shots now are offered in switzerland for OCR people but they dont test your b-cell population.
    now does a booster at least boost the t-cells and would give this more protection? (i doubt if true that t-cells are anyway 300%+ higher than in not cd20 group and still people have to be hospitalised) and do you think does moderna differ in any way from pfizer for antibody creation probability?

    you regard pregnancy under OCR at the moment more risky (double vaccinated with at least t-cells response – but not antibodies) and could the booster reduce the additional risk in theory?
    thank you

    • – As I understand it, both mRNA-vaccines work more on the side of B-cells (and triggering antibodies), whereas the viral vector vaccines have more T-cell memory response.
      – Between Pfizer and Moderna, several studies have demonstrated now that Moderna generates significantly higher antibody levels than Pfizer (although to date the titer needed for protection has yet to be determined).

    • I really hope the get the data out quickly to see if it is making a difference.
      Boosters can boost T cells but is their more protection is unknown.

      Moderna is 3 times more RNA and gives higher antibody levels

      I am not making advice but there are plenty of pregnant people tkaing vaccine

    • Swiss on ocr here: My neuro tests my B-Cells regularly, I’d say reach out to yours if you want to know.

      GP could order the tests too but chances are neuro will know better what to order. I think Roche provides details in the prescribing guidance but it’s been a while since I looked at that one.

      No idea on pregnancy, I know they (FOPH) are recommending vaccines for pregnant women now but no idea how ocr would play into it.

  • Hi!
    My country is offering a 3rd vaccination with Pfizer or Moderna for (among others) MS-patients that take a DMT (all DMTs are included). I had 2 shots of Pfizer, and 2 weeks after the 2nd shot, I tested positive for antibodies.
    I realize that with teriflunomide, I’m not the most urgent case to get a 3rd shot (even though I have chronic lymphopeania due to DMT-use).
    I had my 2nd shot in July, and the 3rd shot woud be in October – which is of course quite soon, even if antibody-titer is expected to drop over time.
    I’m a bit worried about engaging too much of the few lymphocytes I have in fighting one particular virus, especially since I have had various viral infections whilst on DMTs. If I didn’t have antibodies (or a very low titer), or if the 3rd shot would be a few months later, that would be a different story. But, as everyone, I have no choice in the matter, it’s now or … maybe never.
    Thank you for any insights you might want to share on this!

    • ” shoots = antibodies, three shoots = more antibodies” Each lymphocyte has a target if it gets activated it grows if not it dies and you make another one so dont worry that vaccine will high-jack a cell sestined to do something else. If it is going to be never choose now.

  • This is probably a question you get a lot about finding the cause of MS

    But are all of these finding into MS, getting closer to finding the cause or further away and muddying the water?

    • ” shoots = antibodies, three shoots = more antibodies” Each lymphocyte has a target if it gets activated it grows if not it dies and you make another one so dont worry that vaccine will high-jack a cell sestined to do something else. If it is going to be never choose now.

  • Do you think there be a second phase 3 trial into mastitinib? For multiple sclerosis

    As it showed promise in the first phase 3 at slowing progression

  • Can pwms who are spms still improve via neuroplasticy when they do massive cognitive physiotherapy?

    Or is improvement really not possible when your are spms?

    • Aggressive HSCT protocols (check the MIST trial) result in improvement for many people diagnosed with SPMS. I do not think you will improve with physiotherapy alone, only slow decline. Really your only chance is probably HSCT.

      • MIST trial is only for, and only recommended for, people diagnosed with RRMS, and MS history of ten years or less. AHSCT is not recommended for anyone Dx with secondary progressive multiple sclerosis, and so far there’s no proof AHSCT will help people Dx with SPMS. Actually it could be dangerous as the chemo ablation leaves the patient without a fully functional immune response. Every doctor and researcher I’ve spoken with (I’m personally familiar with SC researchers at University of California, Irvine) has told me that unfortunately HSCT and AHSCT won’t do anything for MS in the progressive phase. I know no one likes bad news, but I don’t want to ‘blow smoke’ and foster false hope. When I had the chance to seriously talk with the stem cell researchers and ask when the science would be able to actually fix damage one professor told me, “realistically, probably not for another thirty or forty years yet… maybe.” And that was in 2006.

        • My reference to the MIST trial was only about giving an idea of what HSCT protocols should be used. Dr. Burt treated many people with SPMS and saw improvements. Many people today still go abroad for HSCT despite being diagnosed as SPMS and see improvements.
          > AHSCT is not recommended for anyone Dx with secondary progressive multiple sclerosis, and so far there’s no proof AHSCT will help people Dx with SPMS.
          Sorry, this is dinosaur neurology dogma. There is proof natalizumab and siponimod help SPMS. Why on Earth wouldn’t a more powerful anti-inflammatory help even more? RRMS and SPMS are the same disease. There is no “progressive phase” in which something changes biologically. I mean, even one SPMS patient getting HSCT and improving proves your dinosaur friends at the University of California wrong, and there are many such patients. Who cares about “risks” when we are talking about devastating and progressive loss of neurological function that destroys quality of life and robs you of everything? Only the ridiculous dinosaur neurologists.

  • I am using Fingolimod and I am currently not vaccinated because I am afraid that it will not offer a sufficient protection.
    In this post you referred to a vaccine vith 100% vaccine response on Fingolimod.
    could you please clearify what vaccine was used – maybe Novavax, the chinese CoronVac or Sputnik V?

    https://multiple-sclerosis-research.org/2021/08/the-fingolimod-conumdrum-is-it-bad-for-vaccine-response-or-is-it-rna-virus-vaccine/

    QUOTE
    “I think this is an interesting one and to add to this debate I have seen cases where 100% of people taking fingolimod made a vaccine response. But it was not to the RNA vaccine nor the viral vector vaccine. We need repeat information on this. In the UK and the USA this vaccine is not approved but if it works then surely a study should be done to see if this is true”

    Thanks.

  • Good afternoon, after the various murine experiments showing TBI breaching the blood brain barrier and leading to damage caused by the immune system ( https://www.frontiersin.org/articles/10.3389/fimmu.2021.688254/full ) and the possibility that Epstein Barr infected antibodies lead to human MS, what are your thoughts on this article which unlike most MS diagnosis was very rapid and we’ll documented – https://www.cureus.com/articles/40839-a-diagnosis-of-multiple-sclerosis-following-whiplash-injury-is-there-a-true-association ?

  • Any data or thoughts on Covid reinfections among Ocrelizumabers? And in particular on those who had covid, recovered, developed no detectable antibodies, then got vaccinated, tested negative for antibodies again, and got covid again? Is anybody collecting data on this? Thanks

      • This is a never-ending nightmare… It is extremely important to collect data to understand how to behave in the coming weeks and months: I truly hope someone is doing that. Indeed, it does not make much sense to keep speculating about theoretical scenarios, if real cases are already there and just need to be reported and analyzed. There should be a global register for MS people under anti-CD20 DMTs!

  • I know ocrelizumab reduces the ability to make an anti-body response to the covid vaccines. Does it therefore also reduce natural immunity developed from previous infection with covid?

  • Out of 10.

    1 being a failure and 10 stopping MS progression

    Where do you you think BTKi will fair as an MS treatment, based on your knowledge of the immune system both in and outside the CNS, I know we have to with for the trials etc, however what’s your gut feeling?

    • Only being looked at as a disease modifier thus far. For me, as I would be dubious about the safety of using these long-term, the interest will be on what they do to plasma cells in the CNS and the subsequent effect on progression. Obviously, this is a long-term study and not the current focus of the trials so not going to assign a score as yet.

      • Well I did ask for ‘knowledge’ based on……. knowledge of the immune system.

        So gut feeling was my next best shot 😆 and anticipation of the standard ‘let’s see what happens in the trail’ bread and butter answer

      • Ahhh hope not, if the BTKi can cross the blood brain barrier then surly it will have an effect on resident B cells in the CNS. If it does have an effect on these B cells but doesn’t stop progression, then where the hell do we go from there.

        It’s just the micro glial inhibition I worry about, surely they clear dead cells and pathogens etc so if they can’t be cleared as efficiently, would that lead to another disease.

  • HSCT is obviously used for other cancers, using the same (similar?) treatment protocol. So, do the agents enter into the brain in the same way as they do in MS? This is obviously serving a purpose in MS related treatment but in cancer is the fact that agents pass the BBB just considered collateral damage?

  • Bladder stones and MS. A 2017 paper discussed pwMS have increased risk of getting bladder stones, due to raised calcium phosphate levels, compared to those without MS.
    I have bladder stones and I’ve not used a catheter before.

  • I’m trying to get prescribed Ocrevus as a first treatment after diagnosis in 2018. My neurologist has not agreed because of the cost and Covid risk, preferring Plegridy.

    I was double vaccinated in April but given the spread of Delta and the situation in Israel, Ocrevus is starting to seem like a riskier option. Would Cladribine be a possible treatment with an Individual Funding Request? Or is it possible to get it privately? If so does anyone know the rough cost?

    Thanks

  • Is Vitamin D supplementation beneficial to PWMS?

    Are there any benefits? Seams to be conflicting info online from separate studies

    • Put in a search for Vitamin D here on the Blog and looks of information about VitD will be available for you to view.

  • https://t.co/47a7PmzvuL?amp=1

    More evidence supporting Prof G’s view that MS is one disease and that the progressive phase reflects the fact that brain reserve has been used up.

    Exercise is suggested as a way of building some reserve.

    I wonder if current trials to address “progressive disease” will have much impact? Looks like we need therapies to rebuild the reserve or replace the loss of neurons!

    • Surely neuro regeneration on axons and neuroma in the CNS would be the holy grail of treatments.

      It would be great if all or most brain disease charity’s could work together on something rather than fragmented

      There looks to be promising research online about CNS regeneration but it is only research.

      Brain gel and stem cells looks a possibly interesting treatment

    • The problem with exercise trials is the doses always seem to be far too low (I assume to try to maximiz patient adherence to the trial protocols). Truly ridiculous stuff like 30 minutes of moderate aerobic activity thrice a week, or 60 minutes twice a week, including stretching and rests. These trials don’t even get people meeting the bare minimum recommended for general health in the normal population, and realistically to address serious neurodegeneration you are going to have to go way above the minimum amount for healthy people. People with MS should be doing closer to 150 minutes a day than 150 minutes a week.

  • I love these beautiful Goldfish with swishy flowing tails. At £550 for my favourite I’m almost tempted 😊

    Shame to leave unseen in deep dark waters of blog posts-last whilst August’s moody-looking Discus Fish pair claim all the attention!?

  • Mr Mouse, what do you think about fasting and Multiple Sclerosis regarding the immune system, severity and frequency of attacks, inflammation etc?

  • Dear MD,
    Ive seen a recent article featuring LifNano. I know that you and your colleagues were involved with this, so can’t say much, but does this mean it hasn’t gone away or are these just republished documents?

  • Team G, the take home message from my narrative is some symptoms might not be caused by the MS.

    I’m gutted, I kept having UTI like symptoms , blood in urine and pain. But rarely infection. The symptoms got much worse after 12 to 18 months. The GPs, ANPs and MS team just kept thinking it was MS or early menopause and suggested Continence Team only.

    Saw Urologist finally 18 months later after being persistent and I have badder stones.
    One is very big and I need a procedure under general anesthesia to remove the stones.

    I’ve never used catheters before.

    • I’m going to write a formal complaint to the GP surgery, as they kept fobbing me off. My healthcare has been very unsatisfactory.

  • What’s the role of heavy metals in MS. Particularly aluminium in the brain.

    High levels in the brains of people with MS. Is there any explanation for this? And would a heavy metal chelation therapy be worthy of investigation?

  • B cells in the cns

    result of cerebrospinal fluid flow cytometry revealed that 91.13% karyocytes were malignant B naive lymphocytes

    Bring the super nova

    Successful Treatment of Refractory and Relapsed CNS Acute Lymphoblastic Leukemia With CD-19 CAR-T Immunotherapy: A Case Report

    https://www.frontiersin.org/articles/10.3389/fonc.2021.699946/full?utm_source=F-AAE&utm_medium=EMLF&utm_campaign=MRK_1714167_a0P58000000G0YrEAK_Oncolo_20210831_arts_A

  • Is boosting mitochondria and it’s function key to fighting the progressive side of MS?

    Especially secondary progressive MS,

    May looking after mitochondria combat ageing?

    Do you think their will be a treatment that goes down this route or is it more holistic and lifestyle approaches that will combat this?

  • Is there sexism in medical care in the UK? Do men get treated quicker or referred to a specialist quicker? Is there unconscious bias?

    From my experience as a patient the answer is Yes. Relating it to MS care I do wonder…..

  • If the theory is that molecular mimicry of EBV antibodies could be the cause of MS, why wouldn’t we see MS-like effects when giving IVIG to patients?

  • Has there been any research on EBV regarding if someone comes into contact with a person to give them EBV virus again, upping there viral load for example.

    Would this cause a relapse? Or flare up

  • Good news everyone Moderna has decided to not only create a vaccine to prevent the epstein-barr virus ( a prophylactic vaccine called mrna-1189 ) but also more importantly for us they are making a vaccine to train the body to eliminate the epstein-barr virus ( a therapeutic vaccine called mrna-1195 ) for which they mention could be used to treat Multiple Sclerosis. If you want more information just tell me in the comments below and I will post the link to Moderna regarding the therapeutic vaccine called mrna-1195.

  • pwMS on CD20 – if one have made antibodies does it mean higher possibilities of “red mustang” crossing the bridge?

  • Dr. Marcia Angell

    First woman to serve as editor-in-chief of the New England Journal of Medicine.

    “The drugs companies they dont do their one inovation anymore they do zero or close to zero

    Inovation still come from Nih funded research what we are seeing now its a big change

    And i thing its terrible

    Instead of being focus exclusively on the size of the market ,on volume, its now focus on price
    They adquire a drug thats efective against a serious disease multiple sclerosis ,cancer ,serious diseases that people will pay almost anything to get and jack up the price so that it can cost hundreds of thousands of $ for years treatment

    Its a very cruel bussinness model because if you cant pay for it you dont get it”

    min 37:47

    https://www.youtube.com/watch?v=-z_W3yRA9I8

    Big Pharma — How much power do drug companies have? | DW Documentary

  • Do we have any idea on how fast antibody titers are dropping after vaccination when on DMT?
    I had 2 vaccinations with Pfizer, and after the second dose, I had high antibody titers.
    Now I am offered a 3rd vaccination, because I’m on a DMT.
    In my country, a lot of pwms are declining their 3rd shot, because they have antibodies.
    But is it not possible or reasonable to think that antibody levels may decline quicker when on DMTs?
    Would that not be a good reason to take the 3rd shot, just in case?

    • The DMTs shouldnt have an impact on antibodies, half-life for jab induced antibodies are around 3-4 month. I guess every 6-12 month time rejab would be necessary but this varies between person to person.

      • thanks for replying – why should DMT have no impact on antibodies?
        Most (if not all) DMTs reduce B-cells significantly (even if they’re not all B cell depleting). How is that you’re so sure that this does not impact antibody titers? Is there any research on that?
        From what I read about MS and vaccination (pre-covid evidently), studies in general point to a somewhat lessened degree of immunity after vaccination for people on ‘moderate’ DTMs.

  • Im on Ocrelizumab.

    Is a private Elispot test a good way to check if I made some kind of immune respons on my Pfizer vaccine ? (T-cell)

    Or is it throwing my €$£ down the drain?

  • INmune Bio’s XPro treatment showing evidence of remyination In Alzheimer’s patients

    Could this lead to a positive out come in MS or is there something blocking the remyelination, of people with MS

    Or would you say it’s another good sign that remyelination is possible

  • Are there any studies into relapse rate during ramamdan or fasting type events?

    It would be interesting to see if fasting on a mass scale has any effect on relapse rates for people with MS that partake in fasting

      • I know, just for the people who take part.

        Fasting is supposedly good for MS, just lacking in evidence, maybe acts to calm the immune system

  • T time

    Well antibodies are important
    But they are not the be all end all

    Another maven another story 🙂

    Researchers found that patients who had undergone aCD20 treatments had subpopulations of T cells that responded similarly to vaccination as healthy control subjects. Patients who underwent aCD20 therapy generated robust CD4 and CD8 T cell responses to the COVID-19 vaccination. Further, the CD8 T cell response was especially robust among the subgroup of patients with MS who didn’t generate RBD antibodies. This observation reveals that even without circulating B cells, the COVID-19 vaccine effectively primed patients’ immune response to the virus.

    Patients with multiple sclerosis show robust T-cell responses to mRNA COVID-19 vaccines

    https://medicalxpress.com/news/2021-09-patients-multiple-sclerosis-robust-t-cell.html

    Good new for anti Cd-20 patients

    🙂

  • It seems the hospital MS team I am a patient of, the neurologists are only having telephone or face to face appointments with new or deteriorating patients.

    I’ve not spoken to or seen my neurologist for about three years. I just get a six or eight monthly call from a nurse. I have RRMS.

    Is this happening elsewhere in the UK?

    • I suspect that PwMS have lots of different experiences of their local nhs centres.
      Following on from my treatment with Alem (Lemtrada) I’ve had annual mri + face-to-face and more recently phone consultations as well as annual contact from my ms nurse via a call.
      I don’t know if my understanding is correct, but I thought we are all supposed to have annual mri to make sure there’s no sign of disease activity or progression.
      Might be worth having a read of the NICE guidelines on the management of MS and the Association of British Neurologists guidelines to help with deciding whether you’d like to challenge your centre or not.

  • How percentage people with MS have varicella-zoster virus (VZV) antibodies in there system. Or have had chickenpox in there life time? Is it 100% like EBV or can the antibodies wane over time?

    It’s just with VZV taking residence in nerve cells, could the body be reacting to this virus in some way.

    • I believe strongly that vision therapy is a legitimate rehab tool if you have been left with deficits like double vision, convergence insufficiency, etc., although there are some conservative optometrists and ophthalmologists that will reject it and tell you “no phase III trials,” “evidence-based medicine,” blah blah blah. It doesn’t work for nystagmus though. Also probably not covered by the NHS.

  • Dear Prof G.

    How often do Ocrelizumab patients suffer from ms schubs at the end of their cycle in your clinic?
    Or in general?

  • Is it possible to train the immune system like training brains and muscles? Getting a set of right infections at the right times? Is there anything an adult in their 30’s can do? Trying to get regular infections of a certain type of virus? It is interesting to see people on CD20’s developing stronger T cell responses for covid than control…Maybe a vaccine using proteins specific to a spectrum of viruses and found in human?

  • As far as I know Ocrevus is approved in the EU for early primary progressive MS when people have had symptoms of MS for 15 years or less, have an EDSS of 3.0 to 6.5 and evidence of MS activity on MRI scans. Do you think Ocrevus is worth a try (administered in a country where it is approved) when there is no evidence of gadolinium enhancing lesions on MRI scans but other criteria are met? Any experience with Ocrevus in such cases? Also, would be very much interested in finding out if there are any treatments for non-active PPMS that might be worth a try? HSCT or alemtuzumab or any promising clinical trial, etc.? Thank you.

    • HSCT seems to halt PPMS progression in about 50% of cases. Way better than the <1% chance with ocrevus and the 0% chance without treatment. Any highly effective DMT would also slow PPMS progression. No doubt alemtuzumab would help. There is no current clinical trial which has any chance of being better than HSCT or alemtuzumab, to say nothing of the risk of getting put on placebo/comparator.

      • I’d love to read more about this data. Could you please share your source for both HSCT and Ocrevus efficacy for PPMS? Thank you in advance!

  • Sars.cov-2

    Well if you dont have b cells (or antibodies )

    Dont worry those nasty t cell still protect you 🙂

    Findings In this cohort study of 112 participants, those treated with ocrelizumab developed lower serology response compared with untreated patients and healthy controls but showed preserved T-cell response to the SARS-CoV-2 vaccine compared with healthy controls.

    Meaning In this study, preserved vaccine-specific T-cell responses in patients with multiple sclerosis treated with ocrelizumab are reassuring and will help to develop therapeutic strategies in patients with multiple sclerosis during the COVID-19 pandemic.

    Humoral and T-Cell Response to SARS-CoV-2 Vaccination in Patients With Multiple Sclerosis Treated With Ocrelizumab

    https://jamanetwork.com/journals/jamaneurology/fullarticle/2784449?guestAccessKey=1abd6255-6e1c-4b3b-ab3d-4c812168ea09&utm_source=silverchair&utm_medium=email&utm_campaign=article_alert-jamaneurology&utm_content=olf&utm_term=092321

  • Back in 2018 professor Gavin mentioned ” I hope in 10 years time it will be self evident ” in regards to epstein-barr virus being the cause of multiple sclerosis.

    How are we doing on that in 2021/2022 ?

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