Old 07-14-2010, 02:52 AM #1 (permalink)
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Default Mucomyst

I response to my complaints about gooey, thick, gagging saliva and mucous my RT sent me a nebulizer and a prescription for Mucomyst (Acetylcysteine) and Ventolin (Salbutamol) to be taken up to 4 times per day.

So it all arrived today and I tried it for the first time tonight and so far the only thing I can say is that it stinks. I mean it literally stinks! As far as doing anything about my saliva problem, I don't know.

Has anyone else tried this and if so what was your experience?
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Old 07-14-2010, 02:41 PM #2 (permalink)
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Default Re: Mucomyst

I have not had a need yet but I really hope it helps you!
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Old 07-14-2010, 04:03 PM #3 (permalink)
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Default Re: Mucomyst

The mucomyst will help with making the secretions in your lungs a little bit more "watery" but really won't help with the saliva...and yes it smells like rotten eggs. it is a little bit outdated. Have you ever heard of Pulmozyme? We use it in our Cystic Fibrosis Center. You inhale it like the mucomyst through the nebulizer. It also helps to loosen up thick secreations in the chest but won't do a whole lot for the saliva.
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Old 07-16-2010, 06:49 PM #4 (permalink)
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Default Re: Mucomyst

Thanks Barb, I asked my clinic nurse about the Mucomyst/Ventolin and why it didn't seem to be doing anything except give me a bad smell to deal with. She has arranged an appointment with the pulmonologist and the rest of the clinic team next Wednesday because I am having a really hard time with the gagging on throat goo lately. I am going to ask for a cough assist machine to help me bring the stuff up to suction because I am tired of barfing.

I haven't heard of Pulmozyme but then that doesn't mean anything, I'd never heard of Mucomyst either. I'll let you know what they say.

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Old 07-16-2010, 08:36 PM #5 (permalink)
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Default Re: Mucomyst

Barry, let me know when you find the right thing... I have just started and it is so annoying . At night I have to get up because I feel like I can't get a breath...oh my gosh what else do we have to put up with? I hope you find something soon. Hugs, Linda
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Old 07-16-2010, 08:38 PM #6 (permalink)
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Default Re: Mucomyst

Hey Barry,

Cough assist machine should help, ask about a secretion drying medication like amytriptiline, they even have transdermal patch worn behind the ear. So far it is working great for my Mom.

Good Luck!

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Old 07-16-2010, 09:14 PM #7 (permalink)
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Default Re: Mucomyst

Thanks Terri, I tried Amytriptiline a while back and it did nasty things to my blood pressure so I am now using glycopyrrolate and it seems to help a bit.

Sorry that you are experiencing this too Linda. This sure does suck, this throat clearing and gagging.
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Old 07-22-2010, 03:07 PM #8 (permalink)
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Default Re: Mucomyst

So we went back to the clinic again yesterday, I wasn't supposed to be there until October because I was just there in June but my gagging on goo was too much so I asked to be fit in.

We met with the pulmonologist and discussed the phlegm issue and she gave me a prescription for some medicine to dry up post nasal drip and acid reflux and she said to quit the mucomyst nebulizer for a while. I hope this does it and that I don't have to do the mucomyst again because it really stinky and the smell never goes away. I cant eat, cant drink and don't want to spend the rest of my days smelling the rotten egg/sulfur smell.

The rest of the clinic went well except for my FVC dropped from 70% in mid June to 50% now. Not good but I feel ok and the bipap at night is helping.
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Old 07-22-2010, 03:23 PM #9 (permalink)
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Default Re: Mucomyst

So sorry for the problems you are having! I hope the new medicine solves the problem. I had a lot of problem that way prior to my trache. I thought I was going to go crazy! About 3 months into my trache and vent it cleared up and for the next 2 years I have been fine. It is just now starting to mildly return. I do get a benedryl every night which we are sure helps.
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Old 07-22-2010, 04:57 PM #10 (permalink)
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Default Re: Mucomyst

Oh, Barry, I hope it does help to be off mucomyst. Sulphur is such a nasty smell, and you were exhausted from your ordeal yesterday. Personally, I'm hoping the exhaustion caused your FVC change, and it picks back up. I've noticed whenever I exhaust myself (as I did yesterday morning), my breathing remains heavy for a long time. I hope you have a nice plateau now that lasts a long time.
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Old 07-22-2010, 06:35 PM #11 (permalink)
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Default Re: Mucomyst

Barry, I'm with Ann hoping it was just you tired. It is a long drive! And you are dealing with the rain and the contactors, that can't help the stress level. And my brother always was more tired the more stress he got. Hopefully you won't have to smell like sulphur anymore. (I'm sure Beth will appreciate that) Not that you wouldn't end up smelling like a rose anyways.

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Old 07-22-2010, 06:49 PM #12 (permalink)
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Default Re: Mucomyst

Barry, i hope your FVC reduction is temporary and caused by humid weather and stress.
I'm pretty sure at your next clinic visit it will be back up.
My sister is having a lot of problems with think mucosa in her throat and coughing. She feels that she can't catch her breath because of that. She also feels like she is congested and might have some post nasal drainage, but her ENT doc said that everything looked OK and sent us back to neurologist.
My sister was taking Nasonex spray for a while, but it didn't work.
If you don't mind me asking, what meds were suggested by your pulmonologist? Briana
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Old 07-22-2010, 09:25 PM #13 (permalink)
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Default Re: Mucomyst

Thanks everyone, I am hoping it was just a glitch, stress or a tired day that caused my low FVC readings.

Briana, the nasal spray for the post nasal drip (which I am not sure I even have) is Ipratropium Bromide. I haven't tried it yet but will later tonight.

I forget what the other anti acid reflux drug was called. I went to get the prescription filled and the pharmacist asks me "Have you ever taken this drug before?" I said no and then he said "Your doctor said that this drug is to be taken through the peg tube so will this pill fit through the tube?" as he showed me a 1/4" diameter pill. I had a hard time typing out a response to that question (I resisted the urge to whip it out and show him that it wouldn't fit - he looked skeptical) but finally bit my tongue and just said "No, but I can crush it". He said "You cant crush this pill so I have to contact your doctor to ask about a liquid form". So I don't have that prescription filled yet but it was something that started with an L so I am thinking it is Lansoprazole (Prevacid). I will let you know when they get it figured out.

Man, isn't this just fun. I went from a guy who hardly ever took an aspirin to this in just a few years.
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Old 07-22-2010, 11:32 PM #14 (permalink)
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Default Re: Mucomyst

Barry, Ask your doctor for another antireflux drug, nexium. It's available in powder form that you can mix with water in put thru the tube.
Hope you feel better,erica
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Old 07-22-2010, 11:36 PM #15 (permalink)
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Default Re: Mucomyst

Thank you Barry!
Rest well. Good night, Briana
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