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New pilot study in the loop from the researchers at Haukeland

Discussion in 'Rituximab: News and Research' started by deleder2k, Dec 8, 2014.

  1. deleder2k

    deleder2k Senior Member

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    Someone whispered me in the ear that Haukeland University Hospital (Fluge and Mella) is publishing (or finishing) a new pilot study with an unknown drug in 6 weeks. They told that the drug works quicker than Rtx. They didn't want to reveal what it was.

    Any suggestions? They have previously experimented with gamma globulins, but I don't think it is that..

    Last time I heard about their Enbrel study was that it was halted due to side effects and low effect on symptoms.. maybe that information was wrong?
     
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  2. Kati

    Kati Patient in training

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    Oh, sweet whispers in the ears like that warms my heart... :angel::angel::angel:
    Looking forward to the news.
     
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  3. Bob

    Bob

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    @deleder2k, thank you for the tantalising info. :)

    Fluge and Mella seem to be really throwing everything they have at ME!

    @deleder2k, So, was the suggestion that the new drug is equally as promising as rituximab? Or was the info you received too limited to be able to answer that?
     
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  4. Bob

    Bob

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    BTW, if the drug reduces symptoms faster than rituximab then it probably works via a different mechanism to rituximab, so it would probably be a completely different drug.
     
  5. alex3619

    alex3619 Senior Member

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    One would almost think it was Christmas!
     
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  6. Adele

    Adele

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    Thank you so much @deleder2k for this information! Extremely excited to hear more! :)
     
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  7. Snow Leopard

    Snow Leopard Hibernating

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    Surely it would be the Enbrel study? Published despite having minimal to not efficacy...
     
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  8. Adele

    Adele

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    if this info is right, then the study may have to do with something that actually works…, which Enbrel didn´t?
     
  9. A.B.

    A.B. Senior Member

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    Hopefully the drug is not as expensive as Rituximab.
     
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  10. Sasha

    Sasha Fine, thank you

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    I'm a bit concerned about us blowing the lid on this before publication, although of course I'm excited to hear the rumour :cool:.

    @Jonathan Edwards - are there limits on what any of us should be saying, so that we don't mess up F&M's chances of publication?
     
  11. deleder2k

    deleder2k Senior Member

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    It could be Enbrel, but I was under the impression that that pilot study was halted? On the other hand, I am not sure if they can do a pilot study without applying to the Regional Committee for Medical Research Ethics in Norway. At the regional ethics site I find both Rtx and Enbrel with project descriptions.

    On a summary from a conferance from the Norwegian ME association it says :
    This was from a note ( http://me-foreningen.com/meforening...-ME-og-klinisk-forskning-26-november-2013.pdf Norwegian) from 26 of November 2013.

    http://forums.phoenixrising.me/inde...-tnf-alpha-inhibitor-etanercept-enbrel®.31770 Thread about it on PR here
     
    Last edited: Dec 9, 2014
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  12. deleder2k

    deleder2k Senior Member

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    Project description:
     
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  13. alex3619

    alex3619 Senior Member

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    Let me see, we know something might be coming, but not for sure, and its something about some drug trial, but we don't know what drug. I doubt it will cause any issues.

    It might or might not be Embrel, but we can't leak results because we don't have any.
     
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  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I could be wrong as im going off my memory here, but was there some sort of small study that used enbrel with some success in those that were non responders to rituximab. So maybe a difference between those that respond to one but not the other, maybe two other subsets found??
     
    Last edited: Dec 9, 2014
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  16. NK17

    NK17 Senior Member

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    Can't wait to hear more!
     
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  17. Sasha

    Sasha Fine, thank you

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    My concern is more about what someone in the know might post, than what has been posted so far...
     
  18. deleder2k

    deleder2k Senior Member

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    They researchers spoke about this at a meeting for the Norwegian ME association in Bergen on Friday. They told that something is coming, but didn't want to reveal what it was... If someone could ruin something they wouldn't have said anything, would they?
     
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  19. Sasha

    Sasha Fine, thank you

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    I don't know if researchers are aware of quite how intensely we discuss these things on the internet and I don't know quite how much of a study's 'story' has to have been made public before it would affect its chances of publication. My concern is that if a patient has picked up from somewhere some extra information about results etc. that go beyond what F&M themselves have said publicly, they might pass that on, not realising that it might damage the chances of publication.

    I don't know the limits of what it's OK to discuss - I'm asking that question, really. :)
     
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  20. Adele

    Adele

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    The world is full of social media and people debating ongoing medical research. If this could ruin the research, I guess special secrecy-restrictions would have been applied long ago. In an earlier thread there was some concern about debating someones experience while participating in a study, and speculations about whether one could find signs about whether the person was receiving the drug or the placebo. I can see how such speculations could theoretically be problematic. But general word wandering (is that an expression in english?) around it can not possibly be a problem the way I see it. Can anyone think of something even close to a concrete way this could be a problem? If so maybe we should stop it. If not, then lets just enjoy babeling about something as immensely interesting and exciting for all of us! I love reading new posts under the "Rituximab-section" :)
     
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