Denufosol Trial

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dramamama

New member
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.

There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....

Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
 
D

dramamama

New member
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.

There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....

Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
 
D

dramamama

New member
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.

There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....

Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
 
D

dramamama

New member
Hi AnD!!
No it is not for a specific mutation....this is the real deal for everyone. Those with pfts lower than 70% experience more adverse effects such as more coughing and asthma like reactions. However, only one person had to pull out due to a sever adverse reaction...fev1 declined significantly but resolved spontaneously a few days later.

There is no question that those of us with more damage will have more problems with it which it why they are labeling it as an early intervention therapy.....for healthier people. No worries though, it will help us..we just may need to be on antibiotics and such during first few doses because there is so much movement.....

Ya, I agree, 45 minutes a day is a cakewalk. But, I believe it is just a matter of perspective. To those who ae very healthy like Treehugger...this illness thankfully has not done too much damage...to others, it has and we feel any improvement would be worth 2 hours a day <img src="i/expressions/face-icon-small-smile.gif" border="0"> I pray that this drug will help the healthier people (it already is) and help us all as well!!!
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
A

AnD

New member
Oh yea! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I will be praying that this one comes on through the studies with all the expectations from it still intact <img src="i/expressions/face-icon-small-wink.gif" border="0"> . *I will try not to get too excited yet* <img src="i/expressions/face-icon-small-wink.gif" border="0">, but I admit, I am, just a little... <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
P

princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
P

princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
P

princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
P

princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
P

princessjdc

New member
You know when I read that this drug ups your pfts 30% I was psyched about it, but when I just read that its 3 times a day for 15 mins, makes not so enthused about it. 2 times a day sure but 3!!

Im always looking for new drugs that will help with bringing pfts up, Im healthy with pfts well into the 80s but Im the type that wants higher and higher pfts so if Im that disperate when Defunosol comes out I may try it and see what I think about it. I do have my eye on another drug however that may possibly be out in 2009 and that is PTC 124. Its for non sense mutations and I diffanatley qualify. Im more psyched about that one more than any other drug, I think it would help wonders, I just hope I dont get disappointed.
 
J

JennifersHope

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

all you have to do is adjust the dose. easy enough.</end quote></div>



I DON'T RECOMMEND AJUSTING THE DOSE FOR THE CLINICAL TRIAL THOUGH... ONCE IT IS APPROVED AND THEY KNOW WHAT DOSE TO CUT IT TO, YES, BUT I THINK IT WOULD IMPEDE ON THE INTEGRITY OF THE TRIAL IF YOU WERE TO DO THAT..
 
J

JennifersHope

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

all you have to do is adjust the dose. easy enough.</end quote></div>



I DON'T RECOMMEND AJUSTING THE DOSE FOR THE CLINICAL TRIAL THOUGH... ONCE IT IS APPROVED AND THEY KNOW WHAT DOSE TO CUT IT TO, YES, BUT I THINK IT WOULD IMPEDE ON THE INTEGRITY OF THE TRIAL IF YOU WERE TO DO THAT..
 
J

JennifersHope

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

all you have to do is adjust the dose. easy enough.</end quote></div>



I DON'T RECOMMEND AJUSTING THE DOSE FOR THE CLINICAL TRIAL THOUGH... ONCE IT IS APPROVED AND THEY KNOW WHAT DOSE TO CUT IT TO, YES, BUT I THINK IT WOULD IMPEDE ON THE INTEGRITY OF THE TRIAL IF YOU WERE TO DO THAT..
 
J

JennifersHope

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

all you have to do is adjust the dose. easy enough.</end quote></div>



I DON'T RECOMMEND AJUSTING THE DOSE FOR THE CLINICAL TRIAL THOUGH... ONCE IT IS APPROVED AND THEY KNOW WHAT DOSE TO CUT IT TO, YES, BUT I THINK IT WOULD IMPEDE ON THE INTEGRITY OF THE TRIAL IF YOU WERE TO DO THAT..
 
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