Tuesday, 1 September 2015

Unrelated Blogger Comments-September 2015


     Want to say something unrelated to the posts. This is the place for you

97 comments:

  1. Morning. Is anyone working on any meds for balance problems? I have this urge, in my head, to swerve to a side when walking straight although I can still control it. I feel better when sitting or lying down. Anything that can help with his, which isn't a cane or wheelchair?

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    1. These are generally exercises to rehabilitate the balance via neurophysio. Balance is complicated involving central and peripheral pathways and therefore difficult to treat with medication per se.

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    2. The following isn't meds but there is currently a trial of
      The long-term effects of textured shoe insoles on balance and walking ability in people with MS.
      Wearing textured insoles in shoes is a way of increasing stimulation of the soles of the feet and initial studies have shown that people with MS may benefit from wearing them.

      The aim of this study is to investigate whether textured insoles improve the balance and walking ability of people with MS when they are worn for a period of three months.

      'We are looking to see if different types of insoles stimulate the receptors in the sole of the foot and provide additional sensory information to aid balance and gait.'
      http://www.mssociety.org.uk/ms-research/get-involved-research/be-in-a-study#insoles

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  2. Hey, would taking cbd oil have any effect on lemtrada treatment?
    Thanks :)

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    1. I dont know but suspect not but not sure. The benefit of CBD is unproven.

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    2. I dont know but suspect not but not sure. The benefit of CBD is unproven.

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  3. Would lemtrada be a good choice for newly diagnosed patients now that ocrelizumab is only a breath away?
    Off course we don't know when it will be available so you could say better use lemtrada in stead of waiting x years?

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    1. you. answer your own question. If the efficacy of ocreluzimab is as good as the grapevine suggests.....which it may not be then anti cd20 will be in the same league as alem but without the autoimmune risk.

      However the results are not out and then it iz another year for the regulators to approve and if you are in the UK add another year for the NICE procress so how many relapses will you have whilst waiting. The grass is always greener on the other side but if you have ms today you need to live in the here and now and make the best descision that you can with the available tools.

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  4. Dear MD,

    I have an appointment soon with my MS doctor, I have learnt so much from this blog. Thank you. I also want to sound prepared, but I realize that I have never heard the word ocreluzimab pronounced. Could you phonetically spell it please? Oz-rel-uz-imab is that right, any toe-mate-oh / toe-Matt-oh considerations?

    Thanks

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    Replies
    1. Correct name is ocrelizumab (all these mabs are a pain to remember).
      Ock-Rel-IzU-Mab. No doubt there will be a more memeorable name in the offing (see lemtrada/tysabri etc).

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  5. Does the long term data suggest any differences in the effectiveness of lemtrada vs hsct? Is there really any benefit in blasting the stem cells with chemo? Is there any proof that stem cells have anything to do with m s morphology? Or does the data suggest this is unnecessary? Thanks in advance

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    Replies
    1. HSCT is the ultimate immune reset, but it comes with risks

      Delete
  6. The following autism-related experience may have no applicability to MS, but I thought I would ask. Recently, I overheard a statement that older mothers may have a higher incidence of autism in their children. I have had MS for over 40 years, but I can't recall anything similar said about MS incidence being higher in children of older mothers. Mine had her first child, me, at 37; I have MS. My sister developed Down's Syndrome, and my brother had trouble with addiction. Has any credible research been done on this issue?

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    1. Interesting question. I learned in genetics class that the older your father is, the more mutations he passes on. So, an average person is born with 60 mutations. My father was 37 when I was born, so maybe I've got a few more than most.

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    2. The cause of Downs Syndrome is well known and is an extra chromosome

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    3. Yes but it's also strongly correlated to the age of the mother. Mine was 43 when she had my sister... with Downs.

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  7. Are the below breakdown of Stats correct that someone posted about Alemtuzumab and its success rate? If so why isn't this what is told to the patients? If not can you correct?

    Neither of the two major trails fully support this, in fact CARE MS trial, after 2 years only 40% of people reported no relapses or progression, this does change after you re-baseline but it means in simple terms. If you are a 1 on a EDSS Scale, there is a 60% chance that you will have another relapse and accrue further disability whilst the medicine is 'working.' Then if we need to re-treat youwe re-baseline our results and then you get close to 70%. If you tell patients that, and then give the same HONEST stats about Nataluzmab (which I don't have to hand) is it not easier for the patient to make a decision?

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    Replies
    1. I saw it in the Aug unrelated blogger comments. Thoughts Doc G?

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    2. So the CARE-MS Phase III study for treatment naive patients (those who have never been on a DMT before) showed that Alemtuzumab achieved disease free activity in 39% of patients at year 2. What this means is that 61% of people participating in the study did not. When they say disease free activity they mean NEDA which includes both clinical and MRI free disease activity. Trying to predict what happens to the 61% population in year 3 and 4 would be pure guess work, some may have break through disease activity in terms of MRI but may not have any clinical relapses or disease progression in the short-term.
      The comment about natalizumab is again hypothetical, there has not been a head to head study between the two to start off. Also you have to understand why you'd use one treatment over the other; Alemtuzumab is induction treatment, natalizumab's niche is achieving disease control in uncontrolled disease (some may disagree with me on this).

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    3. It looks like Alemtuzumab longer-term data (5 years) will be presented at ECTRIMS, perhaps we will know more in a few weeks

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    4. The programme is now on the web...what is the most interesting report.

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    5. Why beat around the bush - here it is: The proportion of patients free of sustained accumulation of disability (no increase of EDSS sustained for at least six months) was 87% for alemtuzumab and 62% for interferon. Among those receiving no alternative disease-modifying treatments, the figures were 87% and 69%, respectively. The mean change from baseline in EDSS improved by 0.30 points in alemtuzumab-treated patients; there was no improvement in those receiving interferon, in fact there was a decline from baseline of 0.46 points.

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    6. Doc G: are the baseline improvements in the alem patients also sustained over the 5 year period?

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    7. It seems the slowing of brain atrophy rates is maintained at year 5 (there's an abstract by Barkhof on this). We'll most likely have to wait for the publications in order to get the full story.
      Some people are already muttering if there should be a head to head study between Alemtuzumab and Natalizumab...

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    8. That seems like the logical next step, as even with Alemtuzumab's drawbacks it seems safer than Natalizumab over a lifetime. Thank you for the response.

      Delete
  8. Took XTC few years before diagnosis. It left depressed for few weeks, friends however didnt expierence this. Feel like the PPMS was triggered because of that depressive few weeks. Am only 21 years old, and have PPMS. My Dr did not know was possible to get PPMS that young the youngest he knows is 40 and average age 50.

    Is this possible?

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    1. Your doctor is correct as far as the data on PPMS is concerned the peak age of diagnosis is 5th and 6th decade of life, but the range is from 30's on the MAGNIMS MRI cohort (pan-European MRI study). However, a condition never stays static and may change with the diagnosis being made in younger people.

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    2. I have three friends who took XTC, they took it often for years. Two got depression and one still gets depressed. However, the friend that has been recently depressed it seems connected with their current life situation and working very long hours. My cousin has had depression for years since her relationship break up. None of them have MS. Depression is fairly common.
      Though I do think depression can be connected with triggering a relapse. Depression must be wearing on the body.

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    3. My first symptoms of what is labelled PPMS began in my mid-twenties, I was diagnosed 13 years later in my late thirties. And I'm female. So it just goes to show how individual MS can be, and that the generalisations that you hear about this condition (often from badly informed GPs, I have to say) aren''t very helpful.

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    4. XTC comedown usually comes with depression, especially after continuous use. But probably you got your depression because you already got inflammation and accumulated damage in your brain at the time you took your MDMA dose (or what was in your pills, who knows?).

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  9. http://www.nytimes.com/2015/09/03/opinion/nicholas-kristof-payday-for-ice-bucket-challenges-mocked-slacktivists.html?smprod=nytcore-ipad&smid=nytcore-ipad-share
    I was a skeptic of the ice bucket challenge......"self-preening narcissists" only looking to post cute Facebook clips but it seemed to promote real research.

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    1. Now all they have to do is use gene therapy to replace the gene defect......:-(

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  10. Replies
    1. I say again no, you will find out when it is presented or published, no sneak previews from me anymore

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    2. What do you mean anymore? You've never given anything away. If the Raltegravir trial fails, I'll be writing to my MP. You've filled us with hope, then burst our bubble. No wonder you have problems finding triallists when everything is so hush-hush, can't say anything...

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    3. I seem to remember MD2 getting abuse before the AAN in relation optic neuritis trial. If you had a secret think you were going to tell your partner and then I told them the scret..would you be miffed...it is not my data to blab about.

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    4. Mouse, you sound guilty. Have you been a user of the Ashley Maddison affair website? I viewed the leaked user email addresses and there was one user with the address "bigmousedoctor@barts". May be a coincidence. MD2 is a hero for blabbing. You're just a belt and braces, by the book bore. If you were a TV character, you'd be Blakey from On the Buses. I suppose you're too busy thinking how you will spend your spasticity drug windfall than worry about poor MSer. I don't need to see the data for the Charcot, just post a smilly face if good or a sad face if bad. Prof Gold is in Aus so can't harm you, the worst that can happen is.p a rollicking from Prof G - he doesn't look that scary.

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    5. OK Doc. You don't want to tell us the secret because others will be dissapointed. Fair play. You are the good guy.

      HOWEVER surely you could give us at least a rough estimate of when we can expect to hear some good news? So many people asking, is it so hard to give us SOME HOPE? Why is this so hard?

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    6. What if the news is bad, cranky anon? Let science work and stop acting like the secret results of Charcot are some personal vendetta instead of a medical science experiment.

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  11. Team G I am interested to know what percentage of money collected by different MS charities actually goes to MS research. Also how much goes on salaries, fundraising and other expenses. Is this all in the public domain? thanks

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    1. They will publish their accounts I suspect, but am pretty sure that the percentage will be lower than I would like:-(

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    2. The 2013 for the UK MS Society are available on the internet - of £31.2 million, £5.0 million directly on research, of note £8.2 million was used for support I assume for MSers.

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    3. MS Society UK 2014 accounts should be approved at their AGM on Saturday 19 Sesptember and then be available on their website and on the Charity Commission website. As a member led organisation, spending priorities are determined by members, communicated via the trustee board and then delegated to the CEO.

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  12. Are there any statistics on the precentage of MSers that experience pain? I feel pain every day of some kind and wondered if it's underestimated.

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    1. Two-thirds: http://multiple-sclerosis-research.blogspot.com/2015/07/a-case-of-mind-over-matter-pain-in.html

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  13. I have never mananged to give up a minimal amount of nicotine replacement therapy since giving up smoking over 10 years ago. Interesting to hear that it may be benificial ! In my own case I am informed that by MS had been 'benign' but I have been slowly developing a cognative impirment over the years and my mobility has decreased and then a relapse more recently so who knows ?

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  14. For new drugs/treatments coming on to the market, why is there a need to do comparison trails vs current drugs/treatments when the effectiveness of those drugs is already known, and on a disease like MS where every individual is different?

    Example, you talked about a ZEUS trial (Alemtuzumab vs HSCT) why when there is so much published data on Alemtuzumab and its effectiveness, why can't you just do an HSCT trial and compare results to already known Alemtuzumab trial results?

    E.g. Alemtuzumab- after 2 cycles (standard treatment) x% are disease free in year 1, year 2 etc
    After non-mylo HSCT - x% are disease free after year 1, year 2 etc. you can monitor relapses and disability progression/improvement. All that Alemtuzumab data is there. Would this not reduce the cost of a trial? Seeing as they are starting to do HSCT in London as well, you have your trial subjects.
    You can even pick patients using the same criteria as the Alemtuzumab trials?

    Just curious as it seems to offer a lot cheaper trials...

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  15. Will be the return of Cladribine?: "Germany's Merck KGaA said it would submit its cladribine tablets to treat multiple sclerosis for registration in Europe, taking aim at a comeback for a drug it had given up on four years ago". http://kfgo.com/news/articles/2015/sep/11/merck-kgaa-tries-to-revive-multiple-sclerosis-pill-cladribine/

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    1. Thanks for this Cinara. This could be very good news!

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    2. Great news!
      Many thanks to Cinara.
      Profs. can you pls. verify this news? Seems very important and positive....

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    3. Verified....that this is a plan, we have known about this via the grapevine (not via ProfG) for some time, so have you if you can read the white knight posts.

      It shows that Merck made a huge mistake withdrawing the drug and this was for commercial reasons and not because of the safety reasons, otherwise they would not think of bringing it back, however I think it is not going to be plain sailing.

      However let's hope...it is better and safer than many current MS drugs.

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    4. It was added to the MS Trust webpage early Friday 11th Sept.
      Cladribine comeback
      http://www.mstrust.org.uk/news/msinthemedia.jsp
      Reuters article and also Merck press release.

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    5. Still doesn't solve the mystery of the White Knight posts. Whom were they aimed at?
      Or were they just an amusement for yourself?

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  16. I hope that you'll talk about the following article: http://www.ncbi.nlm.nih.gov/pubmed/26359279

    Prof G has repeatedly claimed that patients with NMO don't transition to a progressive phase, but the evidence for the claim seems quite weak. First, there is previous evidence in the literature of neurodegeneration in the absence of relapse in NMO. Second, an obvious explanation of why NMO patients don't exhibit a progressive course is that (until recently) their life expectancy following diagnosis was quite low, meaning that it would have been impossible to observe any transition which occurred after, e.g., 10 years. The two cases reported above provide clinical evidence that a progressive course can be associated with NMO.

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  17. I've been reading about the low prevalence of MS among European gypsies. The few articles about it are from the 1990's and one from 2008. I thought it interesting and prevalence of MS among gypsies has not been discussed on this blog.

    http://www.ncbi.nlm.nih.gov/pubmed/10364723
    http://www.ncbi.nlm.nih.gov/pubmed/18312478

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    1. Could this low prevalence be due to factors such as genetics, diet and some traditional gypsies having a nomadic lifestyle, perhaps with aspects of a hunter gather lifestyle, working the resources of the land. Some traditional gypsy foods include hedgehog and rabbit and herbs and spices in cooking.

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    2. Hey, hedgehogs are endangered, let's not put 'em at more risk!
      More likely to be genetic? http://www.livescience.com/25294-origin-romani-people.html

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    3. If you ate nothing but rabbit, you would starve to death, as it takes more energy to digest it than you get from eating it - it's such a poor meat.

      Please let's stick to sensible science on this blog, not go down the route of faddy diets.

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    4. "If you ate nothing but rabbit, you would starve to death, as it takes more energy to digest it than you get from eating it - it's such a poor meat."
      That is a myth.

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    5. "That is a myth."

      For fat, farmed rabbits yes. But if you have ever held a wild rabbit from the uplands in your hands (I have), you will know that it is the skinniest, scraggiest thing imaginable.

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    6. Hope it's ok to join this rabbit debate but this is a link from wikipedia (yes I know it's wikipedia).
      https://en.wikipedia.org/wiki/Rabbit_starvation

      Rabbit starvation, also referred to as protein poisoning or mal de caribou or fat starvation, is a rare form of acute malnutrition thought to be caused by a complete absence of fat intake coupled with ad lib protein consumption. Excess protein is sometimes cited as the cause but when meat and fat are consumed in the correct ratio, it is nutritionally complete and can support humans for months or more.

      Rabbit meat is very lean. Commercial rabbit meat has 50-100 g dissectable fat per 2 kg (live weight). Based on a carcass yield of 60%, rabbit meat is around 8.3% fat. [1] For comparison, in terms of carcass composition, beef is 32% fat, pork is 32%, and lamb is 28%. [2] Pemmican is 50% fat by weight.

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  18. MS on the ITV news website today.
    http://www.itv.com/news/2015-09-14/ms-relapses-can-be-triggered-by-benefits-tests-study-suggests/

    "Multiple Scleroris sufferers who claim disability benefits are finding that controversial assessments are causing their condition to deteriorate or relapse, according to a charity survey.

    The MS Society reports that nearly half (48%) of those questioned who had undergone an assessment for Employment Support Allowance (ESA) felt it had harmed their health, with more than a third reporting similar outcomes with the new Personal Independence Payment (PIP) system".

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    1. It is reported in The Guardian today too

      http://www.theguardian.com/society/2015/sep/14/ms-sufferers-health-damaged-by-benefits-tests-survey-finds

      MS sufferers' health damaged by benefits tests, survey finds

      Nearly half of those with multiple sclerosis surveyed by MS Society said they felt the process caused their condition to relapse or deteriorate.

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  19. not sure if this breaks the posting rules: just dropped my eldest off at school for her first day. This blog has played a role in giving me hope. I now believe that I will be able to drop her off at university.

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    1. I hope good news doesn't break the posting rules :-) also hope you will be able to drop her off at university when the day comes and if she wants to go!

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    2. Good news never breaks the posting rules ;-)

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  20. Prof G what has happened to your crowd funding initiative?

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  21. Team G do you have any comments on this article? thanks

    BMC Res Notes. 2015 Aug 30;8(1):391. doi: 10.1186/s13104-015-1378-3.
    Vitamin D supplementation to patients with frequent respiratory tract infections: a post hoc analysis of a randomized and placebo-controlled trial.

    http://www.ncbi.nlm.nih.gov/pubmed/26319134

    BACKGROUND:
    Vitamin D is considered to be important for a healthy immune system. The aim of this study was to test the hypothesis that vitamin D supplementation reduces number of respiratory tract infections (RTIs) and prolong the time to the first RTI in adult patients with frequent RTIs.

    METHODS:
    We performed a post hoc analysis of a randomized, placebo-controlled and double-blinded study, where adult patients with a high burden of RTIs were randomized to placebo or vitamin D (4000 IE/day for 1 year, n = 124 in the per protocol cohort presented here).

    RESULTS:
    Vitamin D supplementation increased the probability to stay free of RTI during the study year (RR 0.64, 95 % CI 0.43-0.94). Further, the total number of RTIs was also reduced in the vitamin D-group (86 RTIs) versus placebo (120 RTIs; p = 0.05). Finally, the time to the first RTI was significantly extended in the vitamin D-group (HR 1.68, 95 % CI 1.03-2.68, p = 0.0376).

    CONCLUSION:
    Vitamin D supplementation was found to significantly increase the probability of staying infection free during the study period. This finding further supports the notion that vitamin D-status should be monitored in adult patients with frequent RTIs and suggests that selected patients with vitamin D deficiency are supplemented. This could be a safe and cheap way to reduce RTIs and improve health in this vulnerable patient population. The original trial was registered at http://www.clinicaltrials.gov (NCT01131858).

    It links to MD's post on RTI's although that acticle suggested RTI's were not related to MRI MS activity (which i'm not I agree with).
    http://multiple-sclerosis-research.blogspot.com/2015/09/upper-respiratory-tract-infections-not.html

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    Replies
    1. Maybe ProfG can comment as VD is his baby...not mine

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    2. Thanks Mouse,
      I thought the conclusions were interesting "Vitamin D supplementation was found to significantly increase the probability of staying infection free during the study period". The study was those taking 4000iu a day. I've been taking 2000iu a day, my vit D levels are over 120 nmol but after reading this article it's made me think I might increase my vit D intake a little more if it could help me stay infection free.

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  22. BBC news.
    http://www.bbc.co.uk/news/health-34295481
    Hope for faster treatment of urinary tract infections
    Urinary tract infections can be treated more quickly using a new DNA sequencing device, according to research.

    If this can lead to much faster treatment for UTI's with the right antibiotics that would be good for MS.

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  23. Getting confused with all these chemical names. Is CDP-choline something new and exciting?

    http://www.dmsg.de/multiple-sklerose-news/index.php?w3pid=news&kategorie=forschung&anr=5711

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    Replies
    1. A nutriceutical...with lack of evidence that neutriceutical brings to the table

      Delete
  24. Addenbrooke's and Rosie Hospitals placed in special measures. I am surprised and wondered how this will impact on pwMS.
    http://www.bbc.co.uk/news/uk-england-cambridgeshire-34317265

    One of the biggest NHS trusts has been placed in special measures after inspectors found it was "inadequate".

    NHS regulator Monitor is taking action to improve Cambridge University Hospitals Trust, which runs the city's Addenbrooke's and Rosie Birth Centre.

    Inspectors found concerns about staffing levels, delays in outpatient treatment and governance failings.

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    1. Barts Hospitals in special measures, didn't the government try to get rid of it in the '80s?
      Now they're doing it again, using a different stick.

      Delete
  25. Does menopause perhaps bring hidden/latent MS to the surface?

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    Replies
    1. Just had this conversation this afternoon too. Would like to know the answer, is there a connection with cognitive impairment?

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  26. Does the neurological examination matter at all important in the diagnosis of MS?
    What if the MRI shows lesions but the neuro exam is normal?

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  27. Is this realy true? Did they find a cure for PML? Please let it be true,,,
    http://www.neuroscientistnews.com/research-news/vaccination-horizon-severe-viral-infection-brain

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  28. I had my first lot of blood tests six months after my CIS diagnosis. I requested these tests.

    I was very run down at the time and had a very bad infection before/ at the time of my first relapse. Reading these first blood tests results my lymphocyte level was low at 1.3, so bottom end of normal range. I get the feeling my lymphocyte levels may have been even lower during my first relapse when I visited the hospital.

    It would of been interesting if the hospital did blood tests on me during this first relapse when I visited them to know the lymphocyte level. We will never know now, I understand it's not normal procedure to do blood tests during first relapse which to me seems strange.

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  29. What would happen if a RRMSer was given 5 days oral steroids when they were suffering from an infection?
    I know a urine test is normally done to rule out infection before steroids are started.

    In this case though say for instance the infection was missed/not easy to read during the dipstick test. Could it make the relapse worse? thanks

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  30. Is there any reason for someone with PPMS to be wary of the flu vaccine? Particularly in light of the apparent B cell involvement (as indicated by the Ocrelizumab results)? Although the vaccine would be better than the flu...

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  31. MS in the BBC news.
    'Multiple sclerosis drugs should be offered earlier'
    http://www.bbc.co.uk/news/health-34392429

    People with the most common form of multiple sclerosis should be offered drug treatment earlier, a charity says.

    The Multiple Sclerosis Society's report suggests there is a "wait-and-see" approach by doctors which needs to end.
    But drug watchdog NICE says while this "disease-modifying therapy" can help in some cases, the benefits need to weighed carefully against side-effects.

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    1. So looks like the MS Society support the idea of protecting brain health why wouldn't you?

      However there are too many people saying "lets wait and see....oops there there I'll get you a NICE wheelchair".

      It is very interesting that the Brain Expert in the BBC report is someone I believe with a specialty in sleep and Epilepsy not MS....Wake up people, this pussy footing is cost protection. Your MS drugs cost too much and are rationed.

      Until a generic chemical arrives, MS drugs are going to be priced out of reach for NICE and the UK. The system doesn't want generics and don't want to upset the apple cart...it is frankly depressing.

      Mr Angry

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    2. There are cheaper off-label options. Although we can't use these in the EU for legal reasons they can be used in resource-poor countries.

      Methotrexate
      Azathioprine
      Mitoxantrone
      Cladribine
      Cyclophosphamide
      Rituximab
      Leflunomide

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    3. Well said MD. NICE's "brain expert" (though obviously not an MS expert, should we name and shame?) is a shill for the do as little as possible, spend as little as possible lobby at NICE.
      Grrrrrrrrrrrrrrrrrr!!!!!

      Delete
  32. I don't want to be rude, but some of the English on this blog from, well, MouseDoctor notably, needs improvement. As does the punctuation. Some comments on this blog are barely understandable.

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    1. I'm afraid MD has well-known dyslexia issues. Hope it doesn't spoil your enjoyment.

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    2. Well-known but not known by me until now. That is a good reason. No enjoyment spoiled either. I sure don't read this blog for enjoyment.

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    3. That's a shame, hopefully we'll have something to float your boat in the near future.

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    4. I have dyslexia, that was my first disability. I'm the MSer who wrote 'stress effects MS'. I think I got the message across though.

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