Do you believe in doing every and any treatment and Medication

Nightwriter

New member
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.
 

Nightwriter

New member
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.
 

Nightwriter

New member
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.
 

Nightwriter

New member
Jennifer,

I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.
 

Nightwriter

New member
Jennifer,
<br />
<br />I love this question and couldn't wait to reply, but you know it will be a long answer. I do have a lot of thoughts on this topic. I will get back to you tonight when I have the time while I am doing my treatments. Just letting you that I hear you.
 

NYCLawGirl

New member
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!
 

NYCLawGirl

New member
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!
 

NYCLawGirl

New member
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!
 

NYCLawGirl

New member
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):

i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.

as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.

zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.

bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.

also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.

good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!
 

NYCLawGirl

New member
okay, interesting. here's my personal take on all this (just my opinion/experience, obviously):
<br />
<br />i personally believe that abx are really overused in this country. it probably sounds a bit rich coming from me (i'm on every abx under the sun in a pretty consistent rotation b/c i get exacerbations from hell), but i honestly think people should be a little more careful about taking abx all the time. besides the resistance argument, it's also tough to ignore the fact that abx can do some rotten stuff to the rest of your body. and sure, it's probably worth some stress on your kidneys or whatever to avoid permanent lung damage, but everything in moderation, right? i would say the same thing about steroids (again, says the woman who's been on oral prednisone non-stop for the past six months at least) - they can do a lot of damage to the rest of your body and you should always be cautious about (over)using them.
<br />
<br />as for regular maintenance drugs like HTS and DNAse? well, everyone's different. i personally don't see why you would pull those from your routine if you tolerate them well (sidenote: i do know a lot of cfers who don't do so well with hts - it used to give my HUGE coughing fits. so if that applies to you then obviously i totally get why you would want to stop that particular drug). and things like DNAse probably won't feel like they're making a huge impact if your lung function is relatively high and your lung disease pretty well controlled. but that doesn't mean they're not helping, and again, given all the studies out there about the benefits of those two drugs (and even albuterol/xopenex) on cfers, i really don't see the benefit in stopping.
<br />
<br />zithro as a regular drug to control inflammation is more of a subjective call. again, there is a lot of info out there showing this drug is helpful overall in maintaining good health in cfers. i wouldn't ignore that, but i can see the abx argument as well.
<br />
<br />bottom line in my opinion: TALK TO YOUR DOCTOR! tell him/her that you're interested in paring down your cf routine in realistic and sustainable ways, then ask for advice and help in doing so. sure, s/he may not be entirely receptive to the overall concept, but i really don't think you should be making these decisions alone. period.
<br />
<br />also, i would keep in mind that you don't want to stop everything at once. if you're serious about this, wean yourself off one drug at a time so that if you DO start to feel a difference at any point you'll be able to more easily pinpoint the cause. likewise add holistic treatments/supplements one at a time as well, for the same reason. and definitely be ready to LISTEN to your body throughout the process.
<br />
<br />good luck with whatever route you choose to go with this. my cf routine is pretty classic, even intense at this point, but would love to hear about any successes you have along the way regardless!
 

Giggles

New member
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.

Jennifer 37 with CF and CFRD
 

Giggles

New member
I agree with things like Albuterol, Dnase and even TOBI which I am all on. But adding oral antiobiotics like Zithromax I am just not sure. I also take Pulmicort and all these breathing treatments I find TOTALLY necessary to feel good. But as long as things are stable or good, my question that I wonder is should a person keep adding more things to the mix like Zithromax or Hypertonic Saline etc. I found HS does nothing for me. I did not cough a bunch of junk up like others have commented and the zithromax I think is aggraveting a acne issus along with stomach aches almost every mon wed fri. SO I stopped Zithro and it just made me think of the original question and what others thought about it.
<br />
<br />Jennifer 37 with CF and CFRD
 

Jeana

New member
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

Jeana

New member
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

Jeana

New member
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

Jeana

New member
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 

Jeana

New member
I have to say that I just added Zithromax to my list of medications. I do agree with Piper that antibiotics are overused, but having three hospitalizations this year and a decrease at one point of almost half my FEV1, I'm ready to do anything necessary to keep my FEV1 up. Besides, I am using Zithromax for inflammation. I don't use any other antibiotics like TOBI (mostly because I couldn't tolerate it). I do believe in doing all the things for mucous clearance and opening of airways--Pulmozyme, HTS, albuterol/xopenex--as long as you can tolerate them. As for allergies, I believe in cleaning up your environment, but using medications when necessary, as well. And finally, I totally and completely agree with talking to your doctor, but do your own research, too! My doctor was very receptive to the ideas I had at my last clinic when I showed him documentation. He also talked to me about his experience with the treatments and his research. I really felt like we were peers, rather than doctor/patient. This is the first time that I've felt like maybe I have some real control over my CF. Okay, enough said. <img src="i/expressions/face-icon-small-wink.gif" border="0">
 
Top