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Thread: Excessive sticky tenacious phlegm.

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    Forum Member pete's Avatar
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    Excessive sticky tenacious phlegm.

    Evening all,

    I left this post to well after teatime because it is about our constant battle with phlegm, Mucus, whatever name you give it, sticky and difficult to cough up , I recently took my fit to fly test, and as I am very fortunate to have a really good respiritry doctor who actually will talk to you about anything and listens to your views ,

    it's long been my belief that in my case the coughing and spluttering is not caused by my food being inhaled ,but down to the sticky clear phlegm that coats the throat, as you swallow particles of food get stuck in the phlegm and it's that action that triggers my cough response, that's backed up by if I clear my throat with mucadyne and make certain there is no sticky stuff lurking ,I can eat most things without any issues.

    I asked if there was anything other than mucadyne as its very much a short term effective , and after much thought it was suggested that we try Erdotin, a drug used in COPD treatment and not on the approved MND list ,but as we all know that's a very very very short list .
    So anyone tried it ,used it ,has any views about the possible benefits or the negative effects ,I have been taking it for a week, but I will hold back my views till I hear your comments .if you have any .
    All I need is a miracle

  2. #2
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    As always Pete a very interesting thread and would like to hear more about Erdotin.
    Evil triumphs when good men stand by and do nothing.

  3. #3
    Forum Member pete's Avatar
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    Quote Originally Posted by Springtime View Post
    As always Pete a very interesting thread and would like to hear more about Erdotin.
    Hi Spring,
    Will send you a PM.
    All I need is a miracle

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    Forum Member DaiTheDragon's Avatar
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    I too have the phlem mucus thing but I don't eat, all through the tube. My lungs are ok, no unusual sounds so I don't know where it comes from. Sometimes I have stuck the suction tube from the suction machine in desperation so far down my throat it made me gag.
    Going to try and sort this out the mnd team tomorrow

  5. #5
    Forum Member pete's Avatar
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    Hi David,

    Yes I know the feeling well , just another fun part of having MND isn't it , Good luck today hope you get some thing done that helps you.
    All I need is a miracle

  6. #6
    Forum Member Barry52's Avatar
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    Hi Pete,
    Thanks for this post. I will investigate and discuss with my GP. The symptoms you describe are identical with me so you may have discovered a solution to mucus.
    Best wishes
    Barry

  7. #7
    Forum Member pete's Avatar
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    Quote Originally Posted by Barry52 View Post
    Hi Pete,
    Thanks for this post. I will investigate and discuss with my GP. The symptoms you describe are identical with me so you may have discovered a solution to mucus.
    Best wishes
    Barry
    Hi Barry,
    If only !!, Well I took the view that being not an aproved drug for MND didn't matter much as long as it works for us , unless we try these things and just smiling and settling for half hearted second choice drugs , we will never move forwards ,pathetically apart from riluzole there is nothing specifically for MND , all my issued drugs are for other complaints just used on a suck and see basis ,so I can only say it has made a big difference to my life after only a week.
    Pete
    Last edited by pete; 23rd February 2015 at 16:58.
    All I need is a miracle

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    pete,
    please tell,i've had terrible mucus/phlegm getting up in my trache lately? i was even close to getting a herbal supplement, theres a moss thats only grown on the scrotums of Thai lady boys that works a treat apparently! i couldnt get my import license ! i digress though please share.
    mik

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    Forum Member pete's Avatar
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    Smile

    Quote Originally Posted by mik View Post
    pete,
    please tell,i've had terrible mucus/phlegm getting up in my trache lately? i was even close to getting a herbal supplement, theres a moss thats only grown on the scrotums of Thai lady boys that works a treat apparently! i couldnt get my import license ! i digress though please share.
    mik
    Hi Mik,

    Reading your post just has totally made me forget what I was going to tell you !!, Oh I remember now ,
    Yes it's a drug that's mainly used in treating COPD ,but it is being trialed for other conditions and our respiritry Doctor suggeed I try it as everything else has very limited effect, been taking it for just over a week and the thick sticky stuff has gone left with a more easier version to cough out without straining your ribs . So in a short time it has worked better than I hoped for, over the rest of the 28 days it should continue to lessen the production ,I am keeping my fingers crossed ?.
    The drug is Erdosteine the brand name is Erdotin
    Mention it to your gp ,it may help you, I sincerely hope it does, but as its not on the aproved for MND list yet ! It's if your Doctor thinks it's suitable in your case. it has been in use for some time with not much in the way of side effects reported so it's safe and in use. Hope you get to try it , by the way that moss is so overrated .
    Pete
    All I need is a miracle

  10. #10
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    thanks pete, i will mention it to my gp at my next appointment and i'll give the moss a miss!
    thank you ever so much pete,
    mik

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