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  • A couple of weeks post-Lemtrada now, doing much better! I went to work last week. Looking forward to seeing my numbers on Friday.

    I'm wondering, aside from the thyroid issues, is anyone doing work on recovery issues with alemtuzumab? Neuros seem to just be winging it on the washouts and relapse issues, but it would be nice if there were guidelines based on research. Also nice if someone was working on correlating the blood work with who responds and who doesn't if possible. Like, if your B cells rise too fast post-alemtuzumab, does that put you in the risk category for a third or fourth round? (Or non-responsive?) If they're collecting all this data…

    • Not much work being done on this front. The B cells coming back early may be the determinant in the systemic autoimmunity. The question you should be asking the Genzyme bods is whether neutralising antibodies to Alemtuzumab impacts on efficacy and redosing?!

    • Thank you, Doc. G! Is there a test available for the antibodies or is this another thing no one cares to really provide?

    • It's available but not for routine clinical use that I'm aware of. I'm sure like anti-natalizumab antibodies this will make its way into the system.

    • "The question you should be asking the Genzyme bods is whether neutralising antibodies to Alemtuzumab impacts on efficacy and redosing?!"
      How would it be in Genzyme's interest to answer that question? Should that not be something that neuros should be discussing with their patients in addition to putting pressure on Genzymes and others to answer? Is that not something that could be answered by post use studies?

    • Neutralising antibodies do what is on the tin and neutralise…it will impact on efficacy and may cause infusion reactions, it is amazing that you get them with alemtuzumab seeing as they wipe out the immune system.

      As to blood work and who responds and who doesn't they haven't found anything in immune subset analysis, but you need to look at antigen-specific responses. NIHR weren't interested in funding this when we proposed this study.

    • N Robertsons team used Campath and Alemtuzumab at their place. They had both RRMS and highly active RRMS in their cohort, ergo the redosing rate in at least 40% of patients. The baseline EDSS is higher than the drug trials with on average including those with an EDSS of 2. This then explains the mild disability progression observed at the end of 6 years. They did however have better reduction in relapse rate than the drug trial amounting to 90% vs 55 and 50% in care Ms I and II trials – wouldn't read too much into this as individual centres vary in what they get. They also noted that requirement for redosing also increases the longer the monitoring period is – which again is no surprise! I have been trying to get through the idea of being on a lesser DMT in the interim which can prevent this immune reconstitution, an idea which has not taken off in the MS community, to avoid this dance with redosing!

    • Same anon: well, I'm not really keen on going back.on DMT unless there's compelling evidence, even though I'm concerned about what I can do as a patient to get the optimal response from Lemtrada. For me, that was one of the selling points of the therapy.

    • Maybe I should have been more specific about the dance, not just the redosing but the systemic autoimmunity which also resets. Of course, I agree this defeats the point of the one off treatment and its convenience.

    • This is why I wondered whether it was especially important post alemtuzumab to make sure that you were full of vitamin D so that the immune system re constituted itself in a vitamin D rich environment. I know that Prof G feels that viatmin D is not going to affect your MS much once it is established, rather is god for bone health and general immune system support, but I wonder about a newly reconstituting immune system

  • Profs,

    There seems to be so much going on in the world of MS research at the moment – I can't keep track of everything which is underway. What should I be looking out for over the next 6-12 months e.g. will i hear about any neuro-protective trials or myelin repair trials? Thanks.

    • Cinara, these GWAS studies simply point out an association and do not demonstrate a causative link. In this case that would be a causative role between the viruses and how efficient the antigen presentation which leads to the autoimmune disorder. It is possible that more than one antibody response may be contributing.

  • If possible, I would like to know more about advances with remyelinating treatments. Also, is there any data regarding the side effects seen in the OPERA I and II trials? From what I understand, the safety profile is decent (good?) but some details would be great. Thank you.

    • Type in remyelination in the search and you will find the posts.

      The side effects of ocrelizumab were posted for a few nano seconds at ECTRIMS and we need to wait for the publication. ProfG knows the data but is gagged

  • I wonder if pwMS have a smell?
    I find it iteresting the wife of a man with parkinsons was able to tell his smell had changed. Research put her nose to the test and she tested 100% correct for some other people with parkinsons. It could be another avenue for assisting diagnosis.


    Also dogs that can smell some diseases.

    • Now you are getting into the Realms of ProfHawkeye who has a scratch and sniff card in his pocket as it does indeed pick up Parkinsons

    • Yes an MS sniffer dog.
      It would be interesting to see if the lady who could smell parkinsons can smell a distict odour of MS. Replicate the parkinsons research but with MS. Get MSers to wear T-shirts for a day.

    • Giant rats in Africa used to sniff out land mines and also to detect TB disease in mucus samples. They are able to work very fast detecting TB.
      Mousedoctors could it be possible to train these rats to detect MS?

  • Anon 5:30 and Aidan
    Paper by Sadiq and intrathecal Methorexate. The paper you cite is based on 121 people, please tell us where the 500 figure comes. I have treated this as an advert and have removed it. Prove me wrong to do this

    The question is whether there is efficacy? The paper was published in 2010 based on a 1 year follow up which is too short to really assess efficacy in progressive MS. Most people were stable over the year but as many people declined as didn't. So there must have been 4 years follow-up what is the data.

    Yes it is interesting but there has been enough time for the study to tested properly and proper trials should be done if it is indeed efficacious

  • I am Anon 5:30. Not trying to advertise. The 500 figure comes from their website and a phone call to their offices. They continue to treat patients with IT methotrexate. Since there is no followup publication and 5 years have passed, I would like to know if anyone knows any more about them or their treatment, possibly through professional interactions that those of you may have.

    I recently finished a 3-year trial for SPMS & want to try something else and possibly avoid what is coming. Just looking for whatever info is available, to decide whether I should visit them.

    • Thanks for responding, why not ask them for follow-up data and whether there are plans to do a proper trial. A quick search of their site with methotrexate did not reveal 500

  • Have you heard any updates regarding the clemastine fumarate trial (which, from my understanding, concluded several months ago)?

    • i would not tell you even if i knew anything. It is not correct etiquette that I spill someone elses beans You have to wait until they talk about it or until the paper is published i'm afraid

  • MD – is it common in cases like this for a paper to never be published? I'm just wondering if there's a real chance that the results may never be known.

  • Team G, could a relapse happen after a fracture or injury such as a fall? I read that bone and the immune system interact closely during fracture healing.

  • Any research into secondary autoimmunity after alemtuzumab and outcome/effectiveness of drug? Ie someone who gets thyroid problems 6 months after first dose are they more or less likely to be a responder than those that don't get autoimmune problems? Many thanks

  • I noted a couple of blogs about the rebranding of off patemt drugs. Did a Conservative minister of Health Alistair Birt really fillibuster the private members bill? Has the man no shame? On the one hand the Governments says the NHS is broke then on the other hand we have this.

    Read the article in The Independent. Yes it is a contentious issue ibut is this approach the right answer?

  • Team G I have been reading the vitamin D increases serotonin is this correct?

    Interestingly I read that SAD can be successfully treated with serotonin reuptake inhibitors, which increase the availability of serotonin in the synapses of the brain.

  • It is often suggested on this blog that the general neurologists of the UK are very conservative and seem to be behind wit the times in terms of MS research. What can be done to address this issue? Do the MS specialists provide enough education to the generalists? Is there a system in place for you to update your colleagues on a regular basis?

    • There are many avenues for this through conferences, courses, journals etc. This may not be the issue…

    • What do you think the issues/barriers are? Why are the generalists so conservative? How can we overcome this? I would like to think that eventually people in the uk can get timely and appropriate access to treatment.

  • Dear All,

    Any data on Natalizumab and blood clots? Just been DXed with one last night. Had a clot after a bad rugby tackle six years ago, but nothing since then. Not sure if tysabri has played a role.

    • There's no evidence that natalizumab interferes with the coagulation cascade. Having said this evidence of a previous DVT itself is a risk factor for DVT.

  • I saw that you removed your post on Debbie. Maybe it is for the best, things
    were getting too emotional. Still It made me want to shout about how I feel
    being a MSers.

    Before my RRMS diagnosis, I used to think that in one year I might not be able
    to do the things I am able to do today; I know now that I won't. I degenerate fast,
    faster than control people. You might think it is a weakness. Some days -yes-
    I feel so tired and depressed that I do not want to leave my bed. Most days
    -no- when I manage to get out of my bed drinking coffee feels like delicious, walking feels
    like an extreme sport and pissing feels like an achievement. I am enjoying
    every seconds of my day more than before. And this is making me stronger than
    I ever was, there is no reason why it could not be the case for you.

    • Thanks I've had a read and I think I will wait until it is done before making a post. Obviously targeting agents into the CNS are a precise location has immense potential and maybe it is the way to get antibodies such as anti-lingo into the brain. But it is only being trialed and the results are more important that the "we are going to do". In the past mannitol has been used to transiently open the blood brain barrier.

  • I have been takeing 20,000 of the biotin since I heard about I all most wont to say am not getting worse, have you heard any more on ths?

    • The work used 300mg/day of biotin, and I haven't seen the ECTRIMS data published yet. This would be phase II data. Reproduction in a larger Phase III study would be useful.

    • thanks can you tell me the difference meaning a lot or little the 300 mg viruses. 20,000 mcg. I read we in usa will be able to buy the higher strength next year. I bet if theres any thing to it it wont happen in usa. can you image what it would do to are pill company's

  • I visited my GP today for something non MS related and we also discussed MS. I raised the importance of GP's recognising MS symptoms in people who have not yet been diagnosed with MS.

    I said I would be happy to talk to GP's and junior doctors at the surgery about my experiences and the GP said they may take me up on my offer. If I do get the chance to discuss my MS further I will include 'Brain health and time matters'.

  • There was something on the news today about the benefits of hydrotherapy for MS. The MSers in the programme were saying it has helped their MS a lot.

    I found this article from 2011, Hydrotherapy for the Treatment of Pain in People with Multiple Sclerosis: A Randomized Controlled Trial.

    5. Conclusions

    According to these results, a 20-week Ai-Chi aquatic exercise program produces a significant pain reduction in MS patients that lasts for 10 weeks after the end of the program. It also improves other MS-related symptoms, including disability, depression, and fatigue. These effects of the Ai-Chi aquatic program were superior to those of an equivalent exercise program in a therapy room.


    • It would seem by these conclusions of 'a significant pain reduction in MS patients' aquatic exercise would be worth a try. Also that it improves 'disability, depression and fatigue'.

      I have pain from my MS. I didn't want to try swimming as I was concerned about swimmers ear infections. It is not a requirement to be able to swim in hydrotherapy and I would make sure I keep my head above water.

    • I've always swum and yes it helps not only pain, but gait. However, immediately after it's a struggle to walk. I use ear plugs, they have improved over the time I've been swimming.

  • A fifth year med student sat in on my GP consultation last week. I sat there thinking how much debt he was in before he starts the hard slog as a junior doctor. Shame on the government, we'll be searching abroad for qualified doctors to prop up our health service in a few years. Not to worry the MPs all have private health care.

  • The EBV work of Professor Michael Pender in Queensland was of great interest to me. Can anyone shed any light on its progress, or that of Gary the patient he was working with? I believe a phase I trial has been completed?

  • Hey guys.

    Just thought I'd give you a heads up that BBC Panorama are about to run a documentary on HSCT, called "Can you stop my multiple sclerosis". It airs on 14th December on BBC1 @ 8:30pm (in the UK).

    I understand they've followed (at least one) patient with aggressive MS through the HSCT process at Hallamshire hospital in the UK, which is one of the international satellite centres for Dr Burt's MIST trial.

    I think you guys said you'd met with Profs Snowden and Sharrack recently – maybe you should line them up for a guest blog post or Q&A around the time this airs, as I'd expect it will generate a lot of interest and questions.

    Anyway, here's the write up from the BBC website:
    Can you stop my multiple sclerosis?
    One hundred thousand people in the UK have multiple sclerosis, an incurable condition that can result in permanent disability. Panorama has exclusive access to patients pioneering a crossover cancer treatment that has enabled some MS sufferers with paralysis to regain their movement.

    Sounds interesting. Hope they give it a fair rap. No doubt, as its the BBC, we'll have the obligatory pharma-funded numpty from the MS Society or the ABN on there providing a counter view (for balance) that it has a fifteen billion percent fatality rate and that everyone would be better off taking interferon beta instead, or some other such scare-mongering bullshit. But from what I gather, it's a positive take overall.

    Only speculating though – I haven't seen it.

    Anyway – good or bad – thought it may be interesting for you/your readers and maybe worthy of a blog post to bring it to everyone's awareness.

    Here's the link: http://www.bbc.co.uk/programmes/b06ss17g

  • I had read about investigations into the JCV, the Herpes Simplex virus, EBV and Champlobacter bacteria as possible triggers of the immune attack against the Oligodendrocytes. MSers I know personally who are positive for EBV and JCV as those know for certain tests were negative for virus 2 and those known to one or the other viruses … Now I know a one- girl who has Herpes Simplex and MS and each time the herpes virus replicates and causes visible symptoms of Herpes she has an outbreak of MS … A friend of mine read this publication and mine sent the link, I found very intriguing, EBV Promoting "immortalization" of B cells by oxidative stress? http://www.nature.com/onc/journal/vaop/ncurrent/full/onc2015450a.html

    • Re: "Any nearer to publication on the inspire trial? Rough guide to when we might hear something?"

      The primary outcome was negative. We are in the process of writing-up and submitting two papers. Interesting biomarker data will be presented at a conference next year.

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