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Thread: Nuedexta and emotional responses?

  1. #1
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    Nuedexta and emotional responses?

    Hi Robyn,

    The new drug, Nueudexta, for controlling emotional labiety, does it control other emotional responses such as shaking, panic attack and aversion to cold?

    Best wishes

    Graham

  2. #2
    Robyn Copley-Hirst
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    Hi Graham,

    The snow has meant that no one is at National Office today...including myself! As soon as I have access to someone from Research or a chance to log onto our systems I will get that information double checked and posted here for you. I'll make this into a new thread as I think a lot of people might find this information/question useful.

    Best Regards,

    Robyn

  3. #3
    Robyn Copley-Hirst
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    Right! I have a response for you, Graham,

    The trial only examined the effect of extreme laughing and crying (also known as PBA) and so its effects on other symptoms are unknown. More information on the drug - including the trial results can be found on this website: www.nuedexta.com (it's the official drug website).

    I'm sorry the answer is 'unknown' but it appears that the trial simply has not looked into the questions you raised,

    I hope this helps some way towards your question,

    Robyn

  4. #4
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    Hi Robyn,

    Thanks for your response. Personally, I would not take the drug if it only controlled my outbursts of uncontrolled crying. However panic attack is more serious and has led to falling on more than one occasion with serious consequences. I would take the drug for this purpose. Can we organise our own trial to assess the wider benefits?

    Best wishes

    Graham

  5. #5
    Robyn Copley-Hirst
    Guest
    I passed the details of your post over to Research, Graham. If I hear anything in the future looking into the wider benefits of the drug you'll be the first person I tell!

    I thought you raised some good points, do you have panic attacks often? I'm sure there are others on the forum here who can empathise with you here on the forum.

    Our Connect team here suggets going to see your GP (if you haven't already) as he may be able to prescribe something for you or to refer you for cognitive behavioural therapy. In some cases this can help. You can ring our Connect team if you want to talk about this further (08457 626262), or email them (mndconnect@mndassociation.org).

    I'll get in touch if I hear anything else about this from our end,

    Best Regards,

    Robyn

  6. #6
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    Hi Robyn,

    Any emotional stress including fear through to excitement causes an emotional spasm in either direction. A spastic attack is one emotional response that causes me to fall. The brain's hippocampus response is predictable and I may avoid certain attacks.

    I have tried anti-anxiety drugs before with a bad outcome. I see that Neudextra is contra-indicated for Myasthenia Gravis.

    Best wishes

    Graham

  7. #7
    MattJ
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    Does anyone know if Nuedexta can be prescribed in the UK? With my mum any option to help improve (even if slight) secretions would be most welcome. I'm thinking of approaching the Oxford MND Clinic but need to arm myself with as much information beforehand.

    http://www.alsa.org/news/archive/201...ch-awards.html

    The Experimental Treatment of Bulbar Dysfunction in ALS
    Richard Smith, M.D., Center for Neurologic Study, San Diego, CA

    Muscle weakness, the cardinal feature of ALS, leads to progressive loss of motor function affecting the limbs, tongue, respiratory and pharyngeal muscles. Symptomatic treatments such as the placement of a feeding tube can compensate for the inability to swallow. Riluzole, the only approved treatment for ALS, may slow disease progression, but no treatment is curative, and none have improved function. Unexpectedly, a drug (Nuedexta) that is approved for the treatment of labile emotionality that occurs in association with ALS and other neurological disorders has been observed to improve bulbar function, primarily speech and swallowing, in a number of neurological disorders, including ALS. The basis for this is conjectural but likely due to a direct effect of the drug on motor neurons in the part of the brain that controls speech and swallowing. The same part of the brain appears to modulate the expression of emotions, and, interestingly, the site of action of the drug is the same as a site that has been implicated in a juvenile form of ALS. Since the effect of Nuedexta on speech and swallowing has not been rigorously evaluated, a clinical trial has been designed to scientifically determine the effect of Nuedexta on bulbar functions. If successful, the study should provide new insight into ALS and its treatment. The study is being funded in partnership with The North East ALS Consortium and will make use of the TREAT ALS/ NEALS Clinical Trials Network.
    Also mentioned on the following ALSTDI thread:

    http://www.als.net/forum/yaf_postst5...nd-speech.aspx

  8. #8
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    Hi Matt. As far as I know, we can't currently get it prescribed in the UK. My understanding is that in early 2013 it might be available. I have been banging on about how we might speed up the process of getting it approved. I am due my next clinic visit in Oxford in a couple of weeks and hope to get an update then.

  9. #9
    MattJ
    Guest
    Hi Miranda,

    I thought it was the case that you couldn't get the drug prescribed. Seems crazy especially with it being FDA approved in the US!

    Lets go for a two pronged attack with the Clinic and we'll see what happens!!!

  10. #10
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    Hi Matt, All,

    I recall the MNDA saying the target for UK introduction was 2011 Q4. Unless we attach a rocket to the rear end of the medical establishment, nothing will happen.

    Nuedextra is a combination of two drugs that maybe available in the UK.

    Interesting that bulbar function is improved. My observation about spasticity was correct.

    Best wishes

    Graham

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