Do you believe in doing every and any treatment and Medication

Giggles · May 6, 2009

I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles · May 6, 2009

I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles · May 6, 2009

I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles · May 6, 2009

I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????

I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.

THanks
Jennifer 37 years old with CF and CFRD

Giggles · May 6, 2009

I was curious what you all thought about loading up on every med and treatment out there to help CF. I am feeing lately to do what I feel is working and reevaluate more antibiotics or treatments as needed not just do it cause a study said it was good etc. For example, years ago I was on Zithromax and then stopped it now I went back on it but it has done nothing other than clear my sinuses and since I am taking another oral antibiotic for something else I decided to stop Zithro. cause I just do not like the idea of being on all kinds of oral antibiotics even though I do take Probiotics. I am also on Omega for inflammation which is what Zithromax is suppose to target. I am thinking I would like to try some holistic approaches with the medical ones? Nightwriter here on CF Forum????
 
 I guess I am just wondering if you all overload yourself with every "tool" out there or do you just play it by air depending on how your feeling presently and how your CF is progressing. I am sure there is no right or wrong answer and I am sure all doctors have different opinions on how aggressively to treat.
 
 THanks
 Jennifer 37 years old with CF and CFRD

saveferris2009 · May 6, 2009

I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009 · May 6, 2009

I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009 · May 6, 2009

I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009 · May 6, 2009

I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.

Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?

So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?

For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

saveferris2009 · May 6, 2009

I look at every med separately and understand how it works and what the benefits are. For example, zithromax prevents inflammation differently than Omega's do.
 
 Part of being proactive, not reactive, is that you don't always see the benefits of what you do. If a med is supposed to prevent infection or prevent loss of FEV1, it's had to tell that it's working because although you're not getting sick, can you really attribute it to what meds you're taking?
 
 So I get what you're saying. But for me, the bottomline is this: CFer's are living longer because of the meds we are taking. It's your prerogative to take only some CF meds, all of them or none of them, of course. But if you look at the #'s objectively, why are patients living to their 30s today as opposed to only 18years old 25 years ago? Is it just CPT? Or is it other meds?
 
 For me, the answer is a case by case basis with my meds. But what I've seen for myself, militant compliance with my CF meds, combined with treating my allergies since 1999, and seeking 2nd opinions from CF thought leaders in the US has kept my lung function in the 90s (I get that there is some part of CF you can't control... so all those rolling their eyes at my lung function I know your gripe with what i just said. But I've skipped meds before and my PFT's plummet almost instantly, so I give myself some, not ALL, credit for my FEV1).

JazzysMom · May 6, 2009

I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom · May 6, 2009

I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom · May 6, 2009

I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom · May 6, 2009

I do understand what you are saying. I also think it really depends on what your philosophy in life is.

I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.

I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.

I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.

There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.

IMHO I also think that my body responds differently to the same thing at different times.

HUGS

JazzysMom · May 6, 2009

I do understand what you are saying. I also think it really depends on what your philosophy in life is.
 
 I have stopped Zithro also. I hadnt felt any difference in the times I was off versus the times I was on.
 
 I also dont use HTS because I feel the reactive airways I get (even using 3% after albeuterol) is regressive instead of progressive.
 
 I just ordered some NAC to see if it helps with my overall health. After taking it for a good 6 months if I dont see a difference then I also will stop that.
 
 There have been times where I had a bunch of things going on with my health & then reacted a bunch of ways & got good results.....the problem was we werent sure which thing we did or if it was the combo of things that finally gave good results.
 
 IMHO I also think that my body responds differently to the same thing at different times.
 
 HUGS

Diane · May 6, 2009

This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane · May 6, 2009

This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane · May 6, 2009

This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane · May 6, 2009

This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Diane · May 6, 2009

This is an interesting question and the answers and outcomes will be different for everyone. I myself never did any clearance treatments at all till i was in my late 20's . To make a long story short i didnt really start to need anything other than an oral maintenance antibiotic till i got cepacia. That changed everything. I started doing the vest, and pulmozyme on a regular basis and more oral antibiotics and more frequent iv antibiotics. What i have found about doing all of this is once i started i NEEDED to keep up with it to feel good or even normal. Slacking off once wasnt too noticeable , but i couldnt get away with it any more then the occasional missed ttreatment here and there.
 Now whats really odd is.... i have not done any treatments ( vest, Pulmozyme. HTS) other than Advair and Albuterol since January because of my recent 3 embolizations and my lungs are clear when the Dr listens to them. I do not know what my pft's are because my Dr. does not want me to do them anytime soon as we dont want to rock the boat after the ordeal i went thru with hemoptysis.
 So to answer your question, should someone load up on everything there is to ward off problems? Probably not. I think personally its always good to have something up your sleeve when things go bad and you really need it. Do i think doing clearance treatments and inhaling meds while i was younger and healthy would have made any difference in the way things are now? Not at all.
 Like Amy said, you do want to be proactive and try to help keeps things under control where you can. But you might not want to go crazy and do everything under the sun in hopes of warding off trouble, because you may need to save those weapons for when you really need them.

Do you believe in doing every and any treatment and Medication

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