Q & A September



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  • I'm wondering why, given that cladribine has better rates of NEDA as alemtuzumab in Phase 3 trials, its atrophy results suggest (to a layman) that it's significantly less effective in that area? (Rates of around -0.5-0.6% in the first two years compared with -0.1-0.3% i.e. normal range). I know you have mentioned in the past the alemtuzumab data not accounting for reswelling brains in non-responders, but isn't this also the case with any DMD trial results, including cladribine's? Could you hypothesise that alemtuzumab is potentially doing something in relation to the degenerative aspect of MS that cladribine is not? For the record, I have no agenda (I'm an MSer). I'd just be very interested to hear your thoughts on this, as, beyond the different safety profiles, it seems to be a crucial aspect when comparing these two drugs.

    • ProfG and others may agree with you, ut we really need a head to head to be sure it was not a consequence ofthe different demographics of the trial populations

    • Also it beats Ocrelizumab in brain atrophy. Again taking the lowest hanging fruit to says it down to trial population. Is like taking the baby and throwing it out with the bath water. Metaphorically speaking!! Maybe cd52 is binding to other cell types? In cancer if your in remission for more than 5 years it's called cured. Why not in MS?

    • Im notthrowing water or mud, whats the atrophy rate change with HSCT. CD52 is binding to other cell types compared to ocrelizumab and is much more depleting than cladribine. 50% of people treated with alemtuzumab do not need another course are they cured…maybe

  • my question is, "if you got diagnosed with MS, with your knowledge and experience, what would you do with regards to the following?"

    1) which medication would you want to take?

    2) what diet what you adopt? would you avoid any types of foods?

    3) what supplements would you take?

    4) what types of exercise would you focus on? (assumption – you are newly diagnosed with little to no, disability, effecting your ability to do exercise of any type)

    5)what type of complimentary treatments, if any, would you have?

    • MouseDoctor

      ProfG, NDG may answer this, but I don't want to give advice.

      But for number 1. It depends on a number of things. Are you JCV positive, what is your work/lifestyle etc. I know what I would not take and what I may take. But I would want my disease under control. I used to say I would go to our fridge and take what I was working on.

  • Am just back from vacation, I got bitten by a few times, but I notice that I am much less reactive to fly bites this year. I assume this to be a side effect of rituxan, which I started in September last year?

  • PwMS having Lemtrada, I have a question please.

    Is the recommended duration to take antivirals after the last infusion of Lemtrada 3 weeks, 28 days, 31 days or a minimum of one month?

    To clarify,I mean after the infusions are finished and not including during treatment (either course 1 or 2).


    • I wouldn't mind an answer to this, as well, given that my yearly MRI is approaching. I'm assuming Gad means gadolinium. Is Prof G saying Gad is harmful? Or that it isn't as useful as T2 weighted MRIs?

  • Oh no! Prof Pender thinks that CD8 T cells are there to control EBV in B cells! Dont tell that to MD!

    "Genetic/environmental defect in CD8 Tcell control of EBV infection…"

  • Hello, my question is about exercise. It's an imperative I really struggle with since while I'm doing it, it makes symptoms worse and is another unwelcome reminder of the damage being done by MS. And plus I've always been lazy. All of which is by the way.

    What I don't understand is why, getting to know MS, you find yourself reading over and over again about athletes, yoga teachers, dance instructors etc being struck down with MS. By my feeble reasoning, that looks like doing exercise does nothing to prevent the disease.

    So is exercise doing something like applying a brake? I can't get a clear idea of what sort of brain activity it is promoting. Can you help my foggy understanding?

    Thank you thank you

  • Can we have an update on Ontario-hand such as when its likely to start recruiting and if PWMS who have had previous DMT's will be eligible for participation? Its all gone quiet after the excitement of the trial announcement.

    • I thought the Candians were up to something, but I guess it is Oratorio hand you are talking about keep a eye out on clinical trials.gov as the trial needs to be registered, before it takes off.

    • "is this saying that lesions disappearing is actually a bad thing!?"

      If our brais are like "paper" and they are burning

      they are disappearing

      Must stop the fire as soon as possible


  • Doomed

    "To objectively assess disease evolution that reflects
    progression, we included patients with a baseline
    moderate level of disability, which, consistent with
    previous reports,18 was attained in a median time of
    12 years. The majority of our patients reached the
    milestone of EDSS 6.0 or more after a follow-up of
    6 years, indicating that, as a group, disability evolution
    is an outcome to be expected in relapsing-onset
    MS patients19 and confirming the time to the attainment
    of severe levels of disability that ranges from 14
    to 28 years after onset.18 Our results also quantify the
    proportion of patients who are stable or undergo confirmed
    increase in disability1 and indicate that disease
    evolution occurs both in the presence and in the
    absence of clinical/MRI activity."

    Predicting the profile of increasing
    disability in multiple sclerosis



  • As someone who has had two courses of alemtuzumab why when only 50% don't need a third course has the momentum disappeared to get a third course approved?

    • Neuros have to answer this. To me it would be logical to offer a third course as this takes it up to 85-90% for those who don't need more treatment. I have just asked and DrK says it is now funded.

      However the issue of neutralizing antibodies looms for the third course as about 75% of people have pre-existing binding antibodies and 30% have pre-existing neutralizing antibodies. Some of those people will have levels of neutralizing antibodies that are high enough to stop alemtuzumab working.

      Why have Genzyme not provided information relating to pre-dose neutralizing antibody levels (at 24months) and post dose (25 month) immune depletion. They have the data in the CARE-MS extension.

      To data this information has been masked. Maybe because they have tried to ignore the neutralizing antibody issue.
      They should offer this test,

    • Dizzie Rascal,s most famous song comes to mind.

      I will need to read the story but Why would you want to remove a drainage pathway from the brain?

      It has only just been discovered and now you want to get rid of it.

      It is there for a purpose (e.g. when you sleep you need to clear the crap (old synapses) away so you can remeber the next day), block that…. and what happens?

      My mum had lymph glands removed from armpit (not on purpose) and now spends her life dealing with the problems of fluid retention in her arm, are we going to create the "Popeye" brain.

      Next if there is something draining from the brain then it is going to be before MS starts…so is the group suggesting "brain Operation" at birth:-)

    • OK now I have shot from the hip in response to the medline story I will read the actual paper

      "Here we demonstrate that meningeal lymphatics fulfill two critical criteria: they assist in the drainage of cerebrospinal fluid components (No problem with this lymphatic drainage allows the interstitial fluid [fluid between cells] to drain from tissues via a lymph gland where it exits and then returns to the blood in the thorasic duct) and enable immune cells to enter draining lymph nodes in a CCR7-dependent manner (No problem with this either as lymphocytes use CCR7 to exit the lymph nodes. We know immune cells disappear from EAE lesions pretty quickly, maybe this is how).

    • Reminds me of the sheep experiments from the 1980s early 1990s. They had big enough lymphatics so they could be tapped and one could see where the immune cells go

  • Quick question about Alemtuzumab. Once depleted do the lymphocyte ever come back to levels pre alemtuzumab? If not does that mean alem causes premature aging of the immune system if so does this increase likely hood of higher risk of cancers etc?

    • Not sure current recruiting trial requires wash out period
      of 4 weeks for Betaseron/Copaxone..one year for Tysabri..but
      any Alemtuzumab treatment disqualifies you from trial.

    • Thanks Adam. Was more questioning the long term effect of alemtuzumab. I've had my 1st course 1 year ago. My lymph count was 3.? Before course. Now after 1 year it's still 1.3. Hope they recover. But i believe alemtuzumab ages the immune. A risk that is not widely shared with patients.

    • Before receiving Alemtuzumab I made a note of ProfG saying that two years post second round of treatment, anything above a grade one lymphopaenia 0.8 is OK.
      Also read on another site that Tecfidera, Fingolimod and a couple of other DMTs also cause lymphopaenia. It added but then so can other things including use of steroids and having arthritis.
      Haven't any info on aging the immune system.

    • Oh, and also read on this site in Feb 2017:
      'It is evident that once you have Alemtuzumab your white cell profile changes forever. What happens in the long-term after Alemtuzumab? The simple answer is we do not know.'

    • Thanks F1. I find it rather disheartening alot of valid questions go unanswered. Not that I'm blaming barts team and understand their busy schedule. So to set the correct expectations should this section be renamed Q and A by MS patients?

    • Long term lymphocyte reconstitution after alemtuzumab treatment of multiple sclerosis.
      Hill-Cawthorne GA1, Button T, Tuohy O, Jones JL, May K, Somerfield J, Green A, Giovannoni G, Compston DA, Fahey MT, Coles AJ.
      Author information

      Alemtuzumab is a lymphocyte depleting monoclonal antibody that has demonstrated superior efficacy over interferon β-1a for relapsing-remitting multiple sclerosis (MS), and is currently under investigation in phase 3 trials. One unresolved issue is the duration and significance of the lymphopenia induced. The long term effects on lymphocyte reconstitution of a single course, and the consequences that this has on disability, morbidity, mortality and autoimmunity, were examined.

      The lymphocyte reconstitution (n=36; 384 person years) and crude safety data (n=37; 447 person years) are reported for the first patients with progressive MS to receive alemtuzumab (1991-1997). Reconstitution time was expressed as a geometric mean or, when a non-negligible number of individuals failed to recover, as a median using survival analysis.

      Geometric mean recovery time (GMRT) of total lymphocyte counts to the lower limit of the normal range (LLN; ≥1.0×10(9) cells/l) was 12.7 months (95% CI 8.8 to 18.2 months). For B cells, GMRT to LLN (≥0.1×10(9)/l) was 7.1 months (95% CI 5.3 to 9.5); median recovery times for CD8 (LLN ≥0.2×10(9) cells/l) and CD4 lymphocytes (LLN ≥0.4×10(9) cells/l) were 20 months and 35 months, respectively. However, CD8 and CD4 counts recovered to baseline levels in only 30% and 21% of patients, respectively. No infective safety concerns arose during 447 person years of follow-up.

      Lymphocyte counts recovered to LLN after a single course of alemtuzumab in approximately 8 months (B cells) and 3 years (T cell subsets), but usually did not recover to baseline values. However, this long lasting lymphopenia in patients with a previously normal immune system was not associated with an increased risk of serious opportunistic infection.

    • "So to set the correct expectations should this section be renamed Q and A by MS patients?"

      It's the fault of this software..all comments should go to a
      discussion forum..instead they get cut off and stranded here.

  • please, please, please stop changing the format.. if you want to add twitter feeds. why not just keep them consistent and in the same place. my MS players trickery with my memory and having things remain static really helps.. so it would be much appreciated 🙂

    also, you've now also changed the comments section at the bottom of the homepage to only show "recent comments" – please revert it back. it was an easier way to follow what's been posted over the last few days… the change to show "recent" — what time frame is recent define to?


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