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Denufosol Trial
- Thread starter dramamama
- Start date
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
rAnDiMKdir
New member
Hey mandy! My pfts are in the high 90's, 100's. My pfts haven't increased but my medicine didn't taste salty either. Maybe I do have the placebo! I'm soo exctied what this might mean for all of us though. I'll keep you in my prayers that something will come along soon for you. Until then, we must keep up with our treatments, medicine and exercise!
Pink Hugs,
Randi
Pink Hugs,
Randi
Denufesol is GOLD. Guess I would feel funny if it is found that the first 6 months were Placebo, but I would bet EVERYTHING it is not. Granted there's not much increase you can get when u start at FEV1s of 108%, but I will take 8 more percentages to 116%. The biggest thing I have seen is a dramatic increase in the 25-75 PFT increase. Had always been about 90%, never higher than 92 or lower than 98, yesterday it was at 106%, tells me that since Denufosol is the only thing different, that this is the reason. After each treatment, sputum is brought up with a huff cough, which nothing else ever would.
I was talking to the doc yesterday and he agreed w/ me, that this is bigger for CF than pulmozye, because yes it does open up another channel, not just hydrate. After the conclusion of the study, it looks like it is possible to stay on med.
The only downside to this med is that it is really only going to be amazing for younger people with CF that are still mild, can't correct problems, but when this drug reaches the market, I would say a child born with CF could expect to have life expectany of at least 50.
I was talking to the doc yesterday and he agreed w/ me, that this is bigger for CF than pulmozye, because yes it does open up another channel, not just hydrate. After the conclusion of the study, it looks like it is possible to stay on med.
The only downside to this med is that it is really only going to be amazing for younger people with CF that are still mild, can't correct problems, but when this drug reaches the market, I would say a child born with CF could expect to have life expectany of at least 50.
Denufesol is GOLD. Guess I would feel funny if it is found that the first 6 months were Placebo, but I would bet EVERYTHING it is not. Granted there's not much increase you can get when u start at FEV1s of 108%, but I will take 8 more percentages to 116%. The biggest thing I have seen is a dramatic increase in the 25-75 PFT increase. Had always been about 90%, never higher than 92 or lower than 98, yesterday it was at 106%, tells me that since Denufosol is the only thing different, that this is the reason. After each treatment, sputum is brought up with a huff cough, which nothing else ever would.
I was talking to the doc yesterday and he agreed w/ me, that this is bigger for CF than pulmozye, because yes it does open up another channel, not just hydrate. After the conclusion of the study, it looks like it is possible to stay on med.
The only downside to this med is that it is really only going to be amazing for younger people with CF that are still mild, can't correct problems, but when this drug reaches the market, I would say a child born with CF could expect to have life expectany of at least 50.
I was talking to the doc yesterday and he agreed w/ me, that this is bigger for CF than pulmozye, because yes it does open up another channel, not just hydrate. After the conclusion of the study, it looks like it is possible to stay on med.
The only downside to this med is that it is really only going to be amazing for younger people with CF that are still mild, can't correct problems, but when this drug reaches the market, I would say a child born with CF could expect to have life expectany of at least 50.