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!!

 

[anonymous]

My daughter, age 4, uses mucomyst. We took her and her brother to see Dr. Warwick a year ago. They go to Texas Children's in Houston. Dr. Warwick recommended mucomyst over pulmozyme. Sophia has only been on oral antibotics once in the past three years. She uses both mucomyst and pulmozyme now as well as hypertonic saline. I am not sure how much really any of them help her. I do know that last summer we moved into an apartment while our house was being finished. She started waking up coughing every night as soon as we moved in. I started her on mucomyst three weeks later. She did not wake up coughing again until the night we got home late and I did not give her mucomyst. I don't know why, but it definitely help her then.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[anonymous]

Becky,

Hi! My name is Kristen and I have a 2yo daughter w/cf and a 4yo son w/o cf (carrier). Kyndall is doing very well. She has only been in the hosp 1 time at 3 mo for aspiration pneumonia. That is when she was diagnosed. other than sinus infections thats pretty much it. Now about a month ago she had a sinus infection we could not get rid of and we so happened to have a appt with an allergist and he wanted to do a chest x-ray, well she had bronchitis, hyperinflation and a mucouse plug!!!!!!! I thought it was the end of the world! So I called her cf doc and he put her on pulmazyme and mucamyst bid, she was almost 100% better the next day! She has done the pulmazyme before but, I asked them if we could stop it b/c I did not see a diff. I really think the mucamyst works good. It made her very hoarse at first but, it got better. Does your daughter go to daycare? What about the vest? Hope to here from you soon, it's feels good to talk to someone who knows how I feel!

Kristen
mom to Kyndall 2 w/cf
Tanner 4 w/o cf