Denufosol study just started

S

SEANP

New member
Hi All,
I wrote a couple months back that we were going to enter my son in the Denufosol Drug Study. Well we just started the treatment this past Friday. I have noticed that my son is coughing more. It is not the normal dry cough. This is a wet sounding cough, which means the mucus is moving around in there. What this drug does is attempts to open up an alternate chloride channel in the cell. This allows for more water to be on the surface of the lung cells and allows for easier clearance of the mucus. It definitely seems to be working. For the first 6 months of the study, you do not know if you are getting the drug or the placebo. I thing Garrick is getting the drug. We had to stop Hypertonic Saline while in the study. Hypertonic made him cough a little, but not a whole lot. This is definitely making a more productive cough. The only down side to the drug is that you have to take it 3 times a day, plus you still take your pulmozyme and any vest or other treatments. I will keep everyone informed of how this unfolds. We are in this study for a year. Think positive thoughts that this will turn out to be an important weapon in the war against Cystic Fibrosis.
 
S

SEANP

New member
Hi All,
I wrote a couple months back that we were going to enter my son in the Denufosol Drug Study. Well we just started the treatment this past Friday. I have noticed that my son is coughing more. It is not the normal dry cough. This is a wet sounding cough, which means the mucus is moving around in there. What this drug does is attempts to open up an alternate chloride channel in the cell. This allows for more water to be on the surface of the lung cells and allows for easier clearance of the mucus. It definitely seems to be working. For the first 6 months of the study, you do not know if you are getting the drug or the placebo. I thing Garrick is getting the drug. We had to stop Hypertonic Saline while in the study. Hypertonic made him cough a little, but not a whole lot. This is definitely making a more productive cough. The only down side to the drug is that you have to take it 3 times a day, plus you still take your pulmozyme and any vest or other treatments. I will keep everyone informed of how this unfolds. We are in this study for a year. Think positive thoughts that this will turn out to be an important weapon in the war against Cystic Fibrosis.
 
S

SEANP

New member
Hi All,
I wrote a couple months back that we were going to enter my son in the Denufosol Drug Study. Well we just started the treatment this past Friday. I have noticed that my son is coughing more. It is not the normal dry cough. This is a wet sounding cough, which means the mucus is moving around in there. What this drug does is attempts to open up an alternate chloride channel in the cell. This allows for more water to be on the surface of the lung cells and allows for easier clearance of the mucus. It definitely seems to be working. For the first 6 months of the study, you do not know if you are getting the drug or the placebo. I thing Garrick is getting the drug. We had to stop Hypertonic Saline while in the study. Hypertonic made him cough a little, but not a whole lot. This is definitely making a more productive cough. The only down side to the drug is that you have to take it 3 times a day, plus you still take your pulmozyme and any vest or other treatments. I will keep everyone informed of how this unfolds. We are in this study for a year. Think positive thoughts that this will turn out to be an important weapon in the war against Cystic Fibrosis.
 
N

NoExcuses

New member
Thank you so much for being in the study.

I know it's not easy - studies can be time consuming. But it's people like you that help us get new drugs to the market.

So thank you from the bottom of my heart.
 
N

NoExcuses

New member
Thank you so much for being in the study.

I know it's not easy - studies can be time consuming. But it's people like you that help us get new drugs to the market.

So thank you from the bottom of my heart.
 
N

NoExcuses

New member
Thank you so much for being in the study.

I know it's not easy - studies can be time consuming. But it's people like you that help us get new drugs to the market.

So thank you from the bottom of my heart.
 
D

dasjsmum

New member
Yes Thank you for taking the time to do the study.

Sending plenty of positive vibes your way!!!

Or should that be our way, because after all, we will all benefit.
 
D

dasjsmum

New member
Yes Thank you for taking the time to do the study.

Sending plenty of positive vibes your way!!!

Or should that be our way, because after all, we will all benefit.
 
D

dasjsmum

New member
Yes Thank you for taking the time to do the study.

Sending plenty of positive vibes your way!!!

Or should that be our way, because after all, we will all benefit.
 
D

damiensmom

New member
I know I sure appreciate those who participate in clinical study. I have been following this study and I want to you to keep us posted.
 
D

damiensmom

New member
I know I sure appreciate those who participate in clinical study. I have been following this study and I want to you to keep us posted.
 
D

damiensmom

New member
I know I sure appreciate those who participate in clinical study. I have been following this study and I want to you to keep us posted.
 
S

sdelorenzo

Guest
Yes, thanks so much for enrolling your son! I know an adult with cf who has been in the denufosol study for a while now. She has done really well on the drug. I do have one question for you. If your son needs to take it three times a day, so he do a treatment at school? Does he need to do the vest after/with the drug? Thanks! Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Yes, thanks so much for enrolling your son! I know an adult with cf who has been in the denufosol study for a while now. She has done really well on the drug. I do have one question for you. If your son needs to take it three times a day, so he do a treatment at school? Does he need to do the vest after/with the drug? Thanks! Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

sdelorenzo

Guest
Yes, thanks so much for enrolling your son! I know an adult with cf who has been in the denufosol study for a while now. She has done really well on the drug. I do have one question for you. If your son needs to take it three times a day, so he do a treatment at school? Does he need to do the vest after/with the drug? Thanks! Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
S

SEANP

New member
Hi Sharon,
This is how we are going to do the treatments. We get him up early to do the pulmozyme, then a dose of the denufosol. The Denufosol can be taken no sooner than 4 hours apart, so technically he can take it after school and then just before bed. We also try to fit the vest in between all of this. If we ever do have to do it at school, I am lucky in that my wife is the clinic person and can give it to him. We have not combined the vest and any neb treatments yet. My son does not like to do this. To be in the study you must be 5 yrs old or older and be diagnosed as "mild" CF. Do you know if they are enrolling at your CF center?
 
S

SEANP

New member
Hi Sharon,
This is how we are going to do the treatments. We get him up early to do the pulmozyme, then a dose of the denufosol. The Denufosol can be taken no sooner than 4 hours apart, so technically he can take it after school and then just before bed. We also try to fit the vest in between all of this. If we ever do have to do it at school, I am lucky in that my wife is the clinic person and can give it to him. We have not combined the vest and any neb treatments yet. My son does not like to do this. To be in the study you must be 5 yrs old or older and be diagnosed as "mild" CF. Do you know if they are enrolling at your CF center?
 
S

SEANP

New member
Hi Sharon,
This is how we are going to do the treatments. We get him up early to do the pulmozyme, then a dose of the denufosol. The Denufosol can be taken no sooner than 4 hours apart, so technically he can take it after school and then just before bed. We also try to fit the vest in between all of this. If we ever do have to do it at school, I am lucky in that my wife is the clinic person and can give it to him. We have not combined the vest and any neb treatments yet. My son does not like to do this. To be in the study you must be 5 yrs old or older and be diagnosed as "mild" CF. Do you know if they are enrolling at your CF center?
 
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