Ask Barts October

Lass from Leeds

Why the Lass for Leeds?….”Knickers round the ankles”..Only Joking 🙂

I don’t know what it’s called but it’s a Henry Moore who did Art in Leeds, Yorkshire

About the author



  • Latent tooth infections.

    I have an infected root canal which is being redone by an endodontist next wee (at vast expense).

    Are there any particular things to make the endodontist aware of regarding MS?

    My MS Nurse feels that the gum/tooth infection just bubbling away does the MS no favours.


    Thank you.


  • Hi,

    I’m due for the 2nd year of Mavenclad. Although backed by scientific proof, I think going without treatment for 3 years seems like a long time. And although the CLARITY trails showed that on average, across the study’s population, re-treatment gave diminishing returns, how do I know when I personally should have started a new round of Mavenclad or some other drug? So questions;
    – Is there any way to monitor when I personally should be re-treated/ treated?
    – Meanwhile, is it possible and useful to go on another drug, e.g. with a different MoA, say Aubagio? (stacking drugs)

    • There is no evidence on safety of doing this induction approach (CLAD + Aubagio). However clad is less depleting than alemtuzumab. You can have a scan to check there are no new lesions. Remember in some people memory B cells go for many years and for alemtuzumab 50% are NEDA on 2 doses and about 85% on 3 doses.
      P.S. I am not a doctor

  • I read from one of Prof G’s posts that there is medication available for dyssynergia symptoms (alpha blockers?) but when I asked my neuro he said that this group of drugs were used to treat prostate cancer and not particularly effective in MS. My issues are not chronic and relatively mild but can flare when I’m travelling, so the idea of an ‘insurance’ prescription for this was appealing. I’ve had bladder scan which shows no sign of retention and (I think) confirms that this is occasional. I’m waiting for the feedback from the uro-consultant but any thoughts? Are these meds ever going to be an option?

    • Temelimab certainly has the potential to become a game changer based on the fact it is a viral targeter…

      “The results of ANGEL-MS confirm the potential of temelimab to act against disease progression, the largest unmet medical need in this indication. It further reinforces our determination to continue the development of temelimab in MS.”

      “Temelimab is a humanised, monoclonal antibody designed to mitigate the effect of a certain human endogenous retrovirus (HERV) called pHERV-W, which is found in the brains of MS patients. Neutralising the virus allows the drug to block the neurodegenerative process and restore myelin integrity in MS patients.”

      “The drug was well-tolerated by the trial participants and there were no dose-limited safety signals.”

      • GeNeuro are now seeking further funding to continue their development program. Sad but true. Great company with possible adjuvant therapy offering potential combination therapy. Classic example of a company looking outside the box for MS treatments. Treatment is too left of field for investors. If you have are a philanthropist with a couple of million to invest then I’d recommend this company. Solid governance and scientific rationale. Definitely not a cure but solid scientific rationale. Flies in the face of Prod G’s EBV hypotheses but scientifically sound nonetheless. We need to think outside the current autoimmune dogma. Props to Herve and co.

  • Are MS lesions looked at in people who have died and donated their body to medical science, and what do these lesions look like in real life to the people looking at them?

    How many nerves have had their myelin sheath attacked if the lesions appears the size of a 5p piece on a scan? Has it been one nerve that has infected nerves around it?

  • The blog has had many (really useful) posts on smouldering MS, slowly expanding lesions, chronic lesion activity, etc
    None of these posts seem to have mentioned Black Holes
    I’ve been wondering how “Black Holes” fit in
    Do black holes contribute to progression?
    Are they truly ‘dead’ or are they smouldering?
    Do the number and volume tell us anything about prognosis?

    • I want the answer to this question to! I have both many chronic confluent lesions and black holes. I know black holes = neuronal death, but I have heard of black holes coming back to life again.

  • Suggestions please for young patients with highly active MS running out of options. Tysabri for 10 years held things at bay with no major relapse. (PML risk then too high) Cladribrine for 1 year but not 2nd(repeated infections and generally unwell. Lymphocytes low 0.7 at end ) Huge relapse in treatment gap and unable to work . Tecfidera (Jury is still out re effectiveness but Lymphocytes dropping 0.6). What could be next? Ocrevus also causes Lymphocytes to drop? General suggestions please .

    • Hello 8:03am,

      May I comment, if you don’t mind?
      I am not a medical professional so what I have to say should not be interpreted as medical advice.

      But I do not understand why most young patients with highly active MS responding spectacularly well to Tysabri would stop taking it due to high PML risk when they could reduce PML risk approximately 90% by going on dose extension.

      In my unprofessional opinion, generally speaking, a treating physician would be irresponsible advising halting Tysabri in patients who are young, with highly active MS, and are responding well on Tysabri if they have not tried dose extension which drastically reduces PML risk.

      Let’s be brutally honest. Generally speaking, other DMTs will not be as effective against MS as Tysabri for this group of patients and likely, other DMTs attempted could very well come with significant, unwanted side effects not previously experienced by most having good success with Tysabri.

      It makes me wonder if, when PML risk with Tysabri was discussed, was decreasing that risk via dose extension discussed? AND, was the increased risk of MS worsening on a less effective DMT discussed? AND, was the increased risk of undesirable side effects on other DMTs discussed? Were those properly factored into the switching DMTs equation?

      A properly caring neurologist would not neglect discussing such important points when considering a switch in treatment. JMHO.

      • Thanks for replying. A lot of patients are being taken off Tysabri when they become JCV positive and dose extension does not seem to be widespread in the UK. PML is a real risk. But Tysabri is effective and often had no apparent side effects. Lymphocytes don’t seem to be affected . MS is relentless. Dilemma for the patient snd Neuro .

        • You are so right, always tough choices in MS.
          PML is a real risk, that is why many patients choose to reduce that risk by 88% to 94% on dose extension.

          Standard practice which removes treatment from well-responding Tysabri patients converting to JCV+ without being offered the safety of continuing on dose extension, is not acting in the best interests of the patient.
          First and foremost is the patient one who must deal with MS daily, not the physician who sees a patient a few times a year for a few minutes each visit.

          MSers and caregivers must gain knowledge to become clear about treatment objectives and methods to achieve them. Bottom line, do what is best for yourself in spite of your doctor, if you must. Very likely, if your doctor becomes convinced you are clear-minded about your treatment goal and how to achieve it, he/she will assist.

          But a physician lacking time, caring, or ability is like a mediocre medicine… neither have the desired effect and both present a risk to health, especially facing a major disease like MS.

          Patients should understand that only knowledge provides the strength and confidence required to accomplish treatment goals. Realize it is your life, no one is as interested in it as you are, you can learn what you choose to learn, and need to learn.

          PS. As you know, presently there are no MS DMTs w/o risk, and major risks at that. The mildly effective ones may appear as having less risk than more effective ones but that is not the case if the risk of MS worsening on mildly effective meds is factored into the safety equation. For that reason, IMO, all the MS DMTs carry major risks, not just Tysabri.

          My profound empathy for each MSer navigating the minefield of MS DMTs; with all my heart, I wish it were not so onerous.

          • Very wise words. No easy answers for patients or Neurologists but the more patients know the better.

      • That’s what I thought. Patients still regard it as experimental and dangerous. Of course it has risks but so do the DMTs and the MS itself is the biggest risk and ruins lives. Time to make HSCT more acceptable and spread the word that it’s as an effective option in the UK. MS Society still very cautious in describing it. More good publicity needed.

  • It’s October again and the press is all over us reminding us of the fly vaccine.
    Can you please post a short one reminding everyone on the importance of vaccination for MSers and how MSers could get a non-live (dead?) vaccine in the UK?

    • Sorry – I have just learned that all adult flu vaccine is inactivated. Any safety measures we should undertake if surrounded by children who are receiving the activated nasal edition?

  • Next year in march this women Sandi Abram Selvi

    Will be celebrating her 20 years aniversary of hsct still no weekchair 🙂

  • I have been wondering with Cladribine, what happens after the 4 year window that I believe the medication is suppose to be effective for?

    do you then get retreated, or wait for a relapse to prove its not working anymore?

    sorry if I am overlooking the obvious but just seems a little unclear.

  • what happens after the 4th year of Cladribine? I have read that you take 2 courses 1st year and then a year later, however, the drug is only generally effective for 4 years

    do you then get retreated or wait until you relapse again ? I might be overlooking something, but its not clear

    • This is the fall out of the cladribine programme. We don’t know. I think perhaps profG &K will enlighten us If it is like alemtuzumab 50 percent of people will need retreatment. If you have disease activity one would think retreatment is an option

  • What is an MS Specialist Practitioner also known as? I have heard this HCP title used and its not clear what qualifications they have.

  • MS Specialist Practitioner means nurse or therapist that has had extra training in MS. Its a confusing title as GP means general practitioner.

    So one might assume an MS Specialist Practitioner is a doctor with specialist MS knowledge. I think this needs to be a lot made clearer, especially for people who are not MS patients.

  • I can’t find much research on MS and spironolactone. Only some on its possible immune modulating effects. Do you have anything more specific as a reference? Is it recommended for use in MS patients?

  • Researchers have discovered that the immune system helps out the brain, in the absence of any disease, by making a chemical messenger that boosts memory.

    They believed a type of lymphocyte known as a gamma delta T cell, which is resident in the meninges, could be crucial for memory. So they devised some clever experiments in mice that were specifically engineered to lack gamma delta cells.

    “What was very surprising was that … the molecule they secrete to endow cognition is actually IL-17,” he says.

    Surprising, explains Silva-Santos, because IL-17 (interleukin-17) is what’s known as a “pro-inflammatory cytokine”. It’s something of a bad boy, known to cause inflammation and contribute to disease, notably multiple sclerosis.

    But IL-17, the researchers found, is also a trigger for brain derived neurotrophic factor, (BDNF) a prolific neuron fertiliser that enhances signalling between brain cells in the hippocampus, a major memory centre.

    The team now thinks IL-17 has to be kept in the Goldilocks zone – too much and you get inflammation and disease, too little and memory suffers.

  • Topical antibiotic triggers unexpected antiviral response.

    April 2018, Yale.
    Neomycin antibiotic and herpes virus in mice. Also had an antiviral effect in mice with flu and zika virus.

    Could this antibiotic help pwMS if MS is caused by EBV.

      • Yep easy….mice dont get EBV so it won’t work. EBV is a human trophic virus so mice dont help, unless they are humanised mice.

  • New alert

    N.Y. Tisch MS convention

    Said that ppms its an antibody caused disease

    ppms its likely a diferent disesase from rrms/ppms

  • A query about ocrelizumab. Given that the drug has proved of some use with RRMS and PPMS, to use the old-fashioned typology, I always wonder why there don’t seem to be efforts to see whether it might be of some use in “secondary progressive”. As an ignoramus, I can’t imagine why it wouldn’t make an impact, but before I start picketing NICE could you explain why there aren’t trials under way?

    • Recently siponimod and cladribine have been approve across the board by FDA, it shows how daft the who process has become

    • Yes bewarned about privatisation of the NHs by the backdoor.

      Humira is trade name for Adalimumab a human Ig anti-Tumour necrosis factor. Adalimumab was discovered as a result of a collaboration between BASF Bioresearch Corporation (German) and Cambridge Antibody Technology (UK) and maufactured by Abbott (USA) which split into Abbott and AbbVie (USA) who developed Humira. AbbVie reports that Humira achieved $18.427 billion of sales in 2017.

      • Coincidentally I see that same drug is back in the news. Data fracking IMHO.
        Data-fracking is the fracturing of a dataset by the application of a pressurized search through as many data points as is necessary to find one that has the appearance of being positive. Typically, data is combined with cortisol and caffeine, and the mixture is injected at high pressure into statistical analyses to illuminate illusory correlations along which the appearance of success may migrate to a press release. The products of data-fracking tend to be more gaseous than substantive.

        • ProfG posted “Could this be the biggest day in the history of Alzheimer’s Disease? Biogen Plans Regulatory Filing for Aducanumab in Alzheimer’s Disease Based on New Analysis of Larger Dataset from Phase 3 Studies”

          And you see the shady way it got to FDA and you roll your eyes…

    • Join the Queue. There are now so many agents that do this, it is now time to see what they do in humans. The models will repair anyway they do not reflect what we think is happening in MS

  • I am at the Ebmt Auto immune diseases working party meeting in Berlin

    And all of the Maven from the hsct world are here apparently they all came. From Russia and everywhere else

    Gonna try to figured out if they are Quacks

      • Great Luis!
        I read the Burt trial for Lupus and CIPD did not work as well as it did for MS and he would try a different protocol but then he left.
        I am curious about the results and the problems of this trial, and wonder if it would give some answers to the failures of PPMS in correlation to the Tisch theory that PPMS is an antibody disease unlike RRMS/SPMS.

      • I take vitamin C supplements also but I saw a conversation online where some people seemed to think it was a bad idea for us pwms so I wanted to see what others thought.

  • I’m on Rituximab (5 years) which has been a total game changer for me in terms of general well being and energy (feeling normal) however I still feel MS is attacking when my B cells are sometimes at 0 (usually after 6 months and I feel
    I need another dose) I’ve noticed my other lymphocytes are high CD3 92.9% and CD3 absolute 2.437 cd4 74 and absolute 1894 do I need a second med when I feel unwell to target these? Or just get another Rituximab? I’m not sure what they are or what they mean but I know I have to take steroids as I feel the MS is active.

  • I’m needing to know if there are others who have had HSCT which wasn’t successful and then tried Mavenclad. Thankyou

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