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Mucomyst (acetylcysteine)
- Thread starter miesl
- Start date
Yes, my daughter started inhaling it about 2 months ago. I think it thins the mucus in the lungs. I took her to the Minneapolis clinic about 6 months ago and they recommended it over Pulmozyme. She takes both pulmozyme and mucomyst now. I mix 4 ml mucomyst, 2ml albuterol and 2ml chromolyn sodium together.
We moved to an apartment about 4 months ago and she began coughing immediately. Fortunately, it is just a six month temporary move while our house is being finished, otherwise it would not be an option to stay here. The night she started the mucomist solution the night/morning cough stopped. A few weeks later we got home late one night, so I did not give her the solution. She woke up in the middle of the night coughing. A few weeks after that, we were at her grandmothers and the solution spilled, so she didn't take the mucomyst solution again. She woke up coughing that night. I am not sure what part of the solution is helping her, but it seems to be really helping her. I also plan on giving it to my son when he learns how to sit still.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
We moved to an apartment about 4 months ago and she began coughing immediately. Fortunately, it is just a six month temporary move while our house is being finished, otherwise it would not be an option to stay here. The night she started the mucomist solution the night/morning cough stopped. A few weeks later we got home late one night, so I did not give her the solution. She woke up in the middle of the night coughing. A few weeks after that, we were at her grandmothers and the solution spilled, so she didn't take the mucomyst solution again. She woke up coughing that night. I am not sure what part of the solution is helping her, but it seems to be really helping her. I also plan on giving it to my son when he learns how to sit still.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf
Both my daughters use Mucomyst. It was also the MPLS clinic that prescribed it for them. They prefer it over Pulmozyme and all the patients in MPLS that I know of use it. I don't think it's commenly used anywhere else at the moment. When we moved to TX recently the doctor wanted to take the kids off Mucomyst but I refused. I will keep them on it as long as it seems to be working.
For us it was Dr. Milla. Also, this was recently discussed in another post. I had mentioned using Mucomyst and several people asked why we used it and said their clinics don't use or recomment it for various reasons. I don't know how to link it on here but here is the title and date so you can search for it if you want. It's in the Families section.
Topic Title: Do you do nebs? How many and how often?
Created On Wednesday July 20, 2005 3:00 PM
Topic Title: Do you do nebs? How many and how often?
Created On Wednesday July 20, 2005 3:00 PM
wallflower
New member
I also go to the Minneapolis clinic. I was put on Mucomyst from the start by Dr. Warwick (diag. at 2yrs). I am now in the adult clinic and see Dr. Dunitz. My neb is 2.5ml mucomyst, .5 albuterol and 2 ml chrom. sodium. I definatly notice a difference when I don't take it. When I do, I notice that it not only helps clear my lungs, but it helps my sinusis as well. Mucomyst is also good at clearing out your bowl too if it gets backed up - although I could never get myself to drink it <img src="i/expressions/face-icon-small-tongue.gif" border="0">
33 w/cf
33 w/cf
My mother use to use Muco-Myst w/ my sis 30 somewhat years ago.Thats when C.F. patients were still ordered to sleep in tent w/ humidity an infuse the Muco-Myst into the humidifier.
I've had to inhale some through a neb a few times; but the worst was having to drink 20ml. x 2 a day on MON, WED, & FRI or SAT. The taste is horrid but it was definately useful for stripping my intestines of mucus.(sorry if that sounds graphic..it's just the truth)..lol..I say FRI or SAT but I use to actually plan my social life around it a bit, last thing I needed was belching while ona date an my breath be that rancid smell.
Byron
I've had to inhale some through a neb a few times; but the worst was having to drink 20ml. x 2 a day on MON, WED, & FRI or SAT. The taste is horrid but it was definately useful for stripping my intestines of mucus.(sorry if that sounds graphic..it's just the truth)..lol..I say FRI or SAT but I use to actually plan my social life around it a bit, last thing I needed was belching while ona date an my breath be that rancid smell.
Byron
tessa55454
New member
I have used mucomyst my entire life. It was the only really thing that was perscribed to me by Dr. Warwick at the Minneapolis clinic. One time they suggested Pulmozyme, but my mom said that we had too much to do already, no thanks. That was it for that.
Tessa 28 w/cf
Tessa 28 w/cf
I don't want to sound negative towards your mother's decision not to use Pulmozyme, but if they come out with another inhaled drug that is proven to help, would she tell you not to use that too? I understand you are 28 and it is now your decision, but I am a bit confused by this. Again, please don't think I am being negative, I am just curious for her reasons...I am sure she had them.
thanks!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">
thanks!<img src="i/expressions/face-icon-small-happy.gif" border="0"><img src="i/expressions/rose.gif" border="0">
L
luke
Guest
byron,
I assume you have kidney disease of some sort? I have never heard of drinking mucomyst except for tylenol oversdoses and pre cardiac cath for renal patients. I am interested to hear you doc's reasoning.
luke
I assume you have kidney disease of some sort? I have never heard of drinking mucomyst except for tylenol oversdoses and pre cardiac cath for renal patients. I am interested to hear you doc's reasoning.
luke
Is mucomyst, when consumed, used specifically for bowel obstruction, or bowel regulation? Or are you guys, who consume it, ingesting it regularly? Finally, how do you know it is removing mucus from your digestive system? Do you digest better, feel better digestively ingesting mucomyst?
Thanks.
Thanks.
wallflower
New member
I asked my doctor about that last time I was in, and he said that other areas of the county don't use it because they do not feel there is enough data for it? Something like that. I have used it all my life and have not suffered any side effects from it. Because I use it every day, it is rare that I get congested enough to last more than a couple of days.
Those of you unfamiliar with mucomyst, its main purpose is to thin mucus. It is a preventative drug (not an antibotic) used in a neb (usually with albut.). The albut helps to open the airways, and then the mucomyst attacks the mucus, thinning it, making it easier to cough out. As far as drinking it, mucus can build up in your bowl causing a blockage (especially if you don't spit out what you cough up) - drinking the mucomyst helps to dissolve this blockage and flush it away. It doesn't have anything to do with kidney or liver problems. The only bad part is that it smells like rotten eggs - so you can image the thought of drinking it -- it should be one of those gross things they do on Fear Factor <img src="i/expressions/face-icon-small-tongue.gif" border="0">
---When you do drink it, it is only when you are plugged (with doc ok). I havent ever had this problem, so I don't know how much you have to drink, but you don't drink it every day.
Barb 33 w/cf in Mpls.
Those of you unfamiliar with mucomyst, its main purpose is to thin mucus. It is a preventative drug (not an antibotic) used in a neb (usually with albut.). The albut helps to open the airways, and then the mucomyst attacks the mucus, thinning it, making it easier to cough out. As far as drinking it, mucus can build up in your bowl causing a blockage (especially if you don't spit out what you cough up) - drinking the mucomyst helps to dissolve this blockage and flush it away. It doesn't have anything to do with kidney or liver problems. The only bad part is that it smells like rotten eggs - so you can image the thought of drinking it -- it should be one of those gross things they do on Fear Factor <img src="i/expressions/face-icon-small-tongue.gif" border="0">
---When you do drink it, it is only when you are plugged (with doc ok). I havent ever had this problem, so I don't know how much you have to drink, but you don't drink it every day.
Barb 33 w/cf in Mpls.
iLoveGeckoToes
New member
This is data that I received from the medical website UpToDate, possibly explaining why some sites are hesitant to use Mucomyst:
"N-acetylcysteine (Mucomyst)... can liquefy CF sputum in vitro (meaning in the petri dish!). However, there are no well-designed studies that demonstrate its clinical utility (meaning in people). Furthermore, its potential to induce airway inflammation in a subgroup of patients and to inhibit ciliary function has led to reductions in its use.
More recently, inhalation of hypertonic saline (7 percent solution) has been tested because of its proposed ability to promote secretion clearance and/or improve airway lining fluid properties in cystic fibrosis. Preliminary results from an Australian clinical trial presented at the North American CF Meeting (St. Louis, MO 2004) showed improvement in FEV1 and frequency of pulmonary exacerbations. At present, a convenient means to prepare and dispense the solution is not available."
... So, I guess some docs are hesitant to prescribe meds that don't have a lot of clinical data... practicing evidence-based medicine gives docs a comfort zone and is relatively free of liability issues... it's considered good medicine. Also, if docs aren't used to presribing it, then sometimes they get a little iffy about starting. It seems that the MNP clinic has a lot of experience with the medication, it seems to work for their patients, and they feel really comfortable with it. They should look at the data in their patients who are on Mucomyst and those who are on Pulmozyme & see if there are any differences... However, I think the bottom line is... if it makes you feel better and you notice a difference when you're taking it, then it works for you! If you want to try it, your doctor shouldn't hold you back, but instead give you their professional opinion & let you decide... that's the whole basis behind an "informed decision" and docs should respect your judgement and feelings
~L~
"N-acetylcysteine (Mucomyst)... can liquefy CF sputum in vitro (meaning in the petri dish!). However, there are no well-designed studies that demonstrate its clinical utility (meaning in people). Furthermore, its potential to induce airway inflammation in a subgroup of patients and to inhibit ciliary function has led to reductions in its use.
More recently, inhalation of hypertonic saline (7 percent solution) has been tested because of its proposed ability to promote secretion clearance and/or improve airway lining fluid properties in cystic fibrosis. Preliminary results from an Australian clinical trial presented at the North American CF Meeting (St. Louis, MO 2004) showed improvement in FEV1 and frequency of pulmonary exacerbations. At present, a convenient means to prepare and dispense the solution is not available."
... So, I guess some docs are hesitant to prescribe meds that don't have a lot of clinical data... practicing evidence-based medicine gives docs a comfort zone and is relatively free of liability issues... it's considered good medicine. Also, if docs aren't used to presribing it, then sometimes they get a little iffy about starting. It seems that the MNP clinic has a lot of experience with the medication, it seems to work for their patients, and they feel really comfortable with it. They should look at the data in their patients who are on Mucomyst and those who are on Pulmozyme & see if there are any differences... However, I think the bottom line is... if it makes you feel better and you notice a difference when you're taking it, then it works for you! If you want to try it, your doctor shouldn't hold you back, but instead give you their professional opinion & let you decide... that's the whole basis behind an "informed decision" and docs should respect your judgement and feelings
~L~
I have never been told that I need to drink gallons of water to keep me from turning into a fish out of water. For me, I have used it 31 years and feel great. I drink maybe a glass of water a day if I remember, and my sputum is fluid and not dried and clotted. My lungs are clear with pfts near 100%.
A lot of you are on meds I have never heard of, so I've been looking them up to see what they are. I think that in all, we all take medicane that if you read the data shows signs of concern. I agree in that I think most doctors use what is in their comfort zone and those of their peers around them. Regardless of where we live in the world, I can't see any doctor prescribing a med that they knew would cause so much trouble when other alternatives were available.
A lot of you are on Pulmozyme. Did you know it increases the chance of bleeding in the lungs? It is not common, but that is what it did for me and why I don't use it. Does that mean nobody should use it? Absolutly not.
Wallflower (not signed in)
33 w/cf
A lot of you are on meds I have never heard of, so I've been looking them up to see what they are. I think that in all, we all take medicane that if you read the data shows signs of concern. I agree in that I think most doctors use what is in their comfort zone and those of their peers around them. Regardless of where we live in the world, I can't see any doctor prescribing a med that they knew would cause so much trouble when other alternatives were available.
A lot of you are on Pulmozyme. Did you know it increases the chance of bleeding in the lungs? It is not common, but that is what it did for me and why I don't use it. Does that mean nobody should use it? Absolutly not.
Wallflower (not signed in)
33 w/cf