Questions for brainy Adult CFer's about new study drugs

M

missT

Member
Ok, so there are many really intelligent people on this site and I need help. I am currently enrolled in the PTC 124 Ataluren study. My FEV1 is at 40% (on a really good day). So I have started the study and I really was wondering what all of these drugs are going to do for us? I understand the whole CFTR process.I understand the salt and water issue. I cannot understand how these drugs will help us. I thought that the drugs would stop the mucus production. That is the thing that is literally killing me. Every moment of everyday of my life my lungs are creating mucus and thus inflamation. I am assuming that if with these drugs there is improvement in the CFTR function then shouldnt that mean that the mucus should stop? I keep hearing of those on Vertex with incredible FEV1 improvements and that feel great. I am wondering exactely what is happening to their bodies? I also understand that we have damage that cannot be repaired but for these drugs to do their job they should stop the mucus which in turn will stop the inflamation and halt the disease process. Please those of you who understand this better please respond and educate me. I am looking for real answers because my educated guesses are not panning out. Much Love and Light!
 
M

missT

Member
Ok, so there are many really intelligent people on this site and I need help. I am currently enrolled in the PTC 124 Ataluren study. My FEV1 is at 40% (on a really good day). So I have started the study and I really was wondering what all of these drugs are going to do for us? I understand the whole CFTR process.I understand the salt and water issue. I cannot understand how these drugs will help us. I thought that the drugs would stop the mucus production. That is the thing that is literally killing me. Every moment of everyday of my life my lungs are creating mucus and thus inflamation. I am assuming that if with these drugs there is improvement in the CFTR function then shouldnt that mean that the mucus should stop? I keep hearing of those on Vertex with incredible FEV1 improvements and that feel great. I am wondering exactely what is happening to their bodies? I also understand that we have damage that cannot be repaired but for these drugs to do their job they should stop the mucus which in turn will stop the inflamation and halt the disease process. Please those of you who understand this better please respond and educate me. I am looking for real answers because my educated guesses are not panning out. Much Love and Light!
 
M

missT

Member
Ok, so there are many really intelligent people on this site and I need help. I am currently enrolled in the PTC 124 Ataluren study. My FEV1 is at 40% (on a really good day). So I have started the study and I really was wondering what all of these drugs are going to do for us? I understand the whole CFTR process.I understand the salt and water issue. I cannot understand how these drugs will help us. I thought that the drugs would stop the mucus production. That is the thing that is literally killing me. Every moment of everyday of my life my lungs are creating mucus and thus inflamation. I am assuming that if with these drugs there is improvement in the CFTR function then shouldnt that mean that the mucus should stop? I keep hearing of those on Vertex with incredible FEV1 improvements and that feel great. I am wondering exactely what is happening to their bodies? I also understand that we have damage that cannot be repaired but for these drugs to do their job they should stop the mucus which in turn will stop the inflamation and halt the disease process. Please those of you who understand this better please respond and educate me. I am looking for real answers because my educated guesses are not panning out. Much Love and Light!
 
L

LouLou

New member
here's what I got...
even healthy bodies produce mucus. the difference is is that the mucus is thinner. now most healthy pep's don't culture MRSA and PA like I do. so couple those two nasties and cf and I have very thick, sticky mucus.
 
L

LouLou

New member
here's what I got...
even healthy bodies produce mucus. the difference is is that the mucus is thinner. now most healthy pep's don't culture MRSA and PA like I do. so couple those two nasties and cf and I have very thick, sticky mucus.
 
L

LouLou

New member
here's what I got...
<br />even healthy bodies produce mucus. the difference is is that the mucus is thinner. now most healthy pep's don't culture MRSA and PA like I do. so couple those two nasties and cf and I have very thick, sticky mucus.
 
M

missT

Member
ok, so I am taking a stab here but I am thinking that the study drugs will not get rid of PA or MRSA because we are already infected with one or both of those bugs.
 
M

missT

Member
ok, so I am taking a stab here but I am thinking that the study drugs will not get rid of PA or MRSA because we are already infected with one or both of those bugs.
 
M

missT

Member
ok, so I am taking a stab here but I am thinking that the study drugs will not get rid of PA or MRSA because we are already infected with one or both of those bugs.
 
P

petersymons

Guest
Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.
 
P

petersymons

Guest
Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.
 
P

petersymons

Guest
Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.
 
B

bkc3

New member
If the drugs were to alter the environment through encouraging a more normal mucus, presumably some of the infection that thrive in the thick mucus would be easier to control. We can hope any way.
 
B

bkc3

New member
If the drugs were to alter the environment through encouraging a more normal mucus, presumably some of the infection that thrive in the thick mucus would be easier to control. We can hope any way.
 
B

bkc3

New member
If the drugs were to alter the environment through encouraging a more normal mucus, presumably some of the infection that thrive in the thick mucus would be easier to control. We can hope any way.
 
B

bkc3

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

Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.</end quote></div>

Where can I read about this?

Thanks
 
B

bkc3

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

Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.</end quote>

Where can I read about this?

Thanks
 
B

bkc3

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>petersymons</b></i>
<br />
<br />Hopefully there is a drug coming that will be able to get rid of PA and MRSA and most nasty CF infections, it will be starting trials soon. it may well completely stop any need for ivs in CF.</end quote>
<br />
<br />Where can I read about this?
<br />
<br />Thanks
 
P

petersymons

Guest
the drug is called meveol . Hopefully it will revolutionise the treatment of infections.
www.alaxia-pharma.eu/meveol
 
P

petersymons

Guest
the drug is called meveol . Hopefully it will revolutionise the treatment of infections.
www.alaxia-pharma.eu/meveol
 
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