Mucomyst

[rcq925]

I have some questions, hopefully some of you can answer. I have a 2 year old daughter, Hayley, with CF, and right now she does breathing treatments with Xopenex and Pulmicort, however she does not do any treatments to thin mucus.

I am very interested in any information from patients who use Mucomyst. It seems very popular with patients in Minnesota that see Dr. Warwick or Dr. Milla and since their patients seem to do so well, and they seem to have a longer average life spann at the Minnesota Clinic, it has me wondering about the Mucomyst and how those who use it like it? Also have you tried Pulmozyme? Which did you like better Pulmozyme or Mucomyst? Mucomyst is obviously MUCH cheaper, and I have read some information from Dr. Warwick, that indicates he feels it works better and studies that he did show that Pulmoyme only works for a small amount of patients and it did not really seem to help their patients at all who were already on Mucomyst before trying Pulmozyme.

So anyway, just looking for any firsthand knowledge from people who have tried or use Mucomyst and if you think it is beneficial for you. Also wondering if you use it, where do you live and go to clinic?

Thanks in advance for all replies!!

 

[JazzysMom]

Until Pulmozyme was developed my CF group used Mucomyst. Since that was a while ago I cant really recall what the difference would be in my experience. Even tho Pulmozyme is popular I have found that many doctors still prefer the Mucomyst. I am sure its probably cheaper too! I didnt help much, but that is my 2 cents!

 

[miesl]

Jeremy goes to the MN clinic. He uses mucomyst (2 mL of 10% solution per treatment). He tried adding Pulmozyme, and felt it made him feel worse. Currently, he does mucomyst/albuterol/atrovent followed by 5% hypertonic saline.

 

[anonymous]

I take Mucomyst (Pulmozyme didn't get along with me too well). I get so congested and dry without it - it also helps with my sinuses a little. It is very stinky, but worth it in my opinon.

I have gone to the MN clinic since a kid, and have always been on the Mucomyst (I used to have a mist tent as a kid - anyone else? That was awful!! -Sorry, not mucomyst related).

Anyway, I do mine with Albuterol and Cromolyn Sodium 2x a day.

--Wallflower, 34 w/cf

 

[skh]

My daughter sees Dr. Milla and she has been using mucomyst for the past 1 1/2 yrs. She takes it with her albuterol. She uses a mask when she does her treatment (this keeps her hands free during the treatment so she is able to read or do homework) and Dr. Milla thought this was a good idea since her sinus's would benefit from it then also. She complained about the smell when she first started using it but I believe she has either gotten used to it or resigned to the fact that this is life.

 

[HairGirl]

I use to do pulmozyme from the time it first came out until 2-3 years ago when my hemoptysis was really bad, so since I don't do it anymore, should I ask my dr. about Mucomyst? sounds like it would help.

 

[debs2girls]

I have also been wondering this same thing for my dd. I asked her cf doc about it last month at her clinic visit and he said...."I dont want her on it right now"...I think now is the best time for her to be on it...jmo without medical validation....sometime when she coughs, it is so thick and mucousy that she chokes on it...when she was littler I had to use the booger sucker (a new one) to clear her throat....and still he says no...

 

[JazzysMom]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>HairGirl</b></i>

I use to do pulmozyme from the time it first came out until 2-3 years ago when my hemoptysis was really bad, so since I don't do it anymore, should I ask my dr. about Mucomyst? sounds like it would help.</end quote></div>


I dont think Mucomyst is a good idea for you Ro......it can irritate hemoptysis also. They idea behind both meds is the same. I remember them stopping it during hemoptysis episodes when I was young. As compared to Pulmozyme tho I dont know which might be more irritating.