How long do you do IV antibiotics?

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ej0820

New member
Hey there!
<br />My doc isn't always the most aggressive, but when it comes to being sick and needing IVs, he has me on them until I feel better (or until the side effects become too much to tolerate). I've been on IV meds for about 10 months now, to treat M. abscessus. The treatment course for this particular bug is a long and daunting one, also suggested by an infectious disease doc. I'm not suggesting you need to see an infectious disease doc or that you might have M. abscessus, I'm just saying, my doc keeps you on IVs for as long as he sees necessary. There have been times in the past where I've been on IVs for about 3 weeks and feeling good and my doc has me go a couple more days despite my poor begging attempts at stopping. Best of luck to you!
 
L

livinglovinggrace

New member
I have this battle too. Most times my doctors arent keen for anything beyond the two weeks, however of late they are starting to listen to me better and agree for a third/fourth which MOSTLY makes all the diiference. Usually though, my antibiotics get changed on day 14 and so effectively i do a second round of something new to keep the bugs guessing. Sensitivites in the lab dont always translate to an effective 'cocktail' for me. In terms of resistance my argument is an extra week is better than anothermadmission for 3! Hope you find an answer and feel better soon!
 
L

livinglovinggrace

New member
I have this battle too. Most times my doctors arent keen for anything beyond the two weeks, however of late they are starting to listen to me better and agree for a third/fourth which MOSTLY makes all the diiference. Usually though, my antibiotics get changed on day 14 and so effectively i do a second round of something new to keep the bugs guessing. Sensitivites in the lab dont always translate to an effective 'cocktail' for me. In terms of resistance my argument is an extra week is better than anothermadmission for 3! Hope you find an answer and feel better soon!
 
L

livinglovinggrace

New member
I have this battle too. Most times my doctors arent keen for anything beyond the two weeks, however of late they are starting to listen to me better and agree for a third/fourth which MOSTLY makes all the diiference. Usually though, my antibiotics get changed on day 14 and so effectively i do a second round of something new to keep the bugs guessing. Sensitivites in the lab dont always translate to an effective 'cocktail' for me. In terms of resistance my argument is an extra week is better than anothermadmission for 3! Hope you find an answer and feel better soon!
 
M

MMBinNC

New member
I do Ivs until I get better. For example my FEV1 when "good" is 49, "bad" is like lower than 45. Lately with y new antibiotic IVs have only been 2 weeks, but before that it was at first 3 then as I became more resistant 5, and before we switched I was on for around 2 months!
 
M

MMBinNC

New member
I do Ivs until I get better. For example my FEV1 when "good" is 49, "bad" is like lower than 45. Lately with y new antibiotic IVs have only been 2 weeks, but before that it was at first 3 then as I became more resistant 5, and before we switched I was on for around 2 months!
 
M

MMBinNC

New member
I do Ivs until I get better. For example my FEV1 when "good" is 49, "bad" is like lower than 45. Lately with y new antibiotic IVs have only been 2 weeks, but before that it was at first 3 then as I became more resistant 5, and before we switched I was on for around 2 months!
 
T

TonyaH

Guest
<P>I think it also depends on what organism is being fought.  When Andrew is on ivs for a typical pseudomonas exacerbation he is on ivs for the standard three weeks of treatment.  Lately he has been fighting mycobacterium abcessus.  The first round of ivs ran 6 weeks, but now that the myco has recurred five months later, he is in the middle of another 8 weeks of ivs.  </P>
<P> </P>
<P>I understand that doctors have to look at science and numbers and research to decide how long to keep a patient on abx.  I understand there is always the chance of growing resistant to abx.  This has been the hardest part of CF for me....realizing that CF treatment is NOT an exact science.  There is still so much to be discovered.  I think the best thing you can do is find a doctor you can trust.  If you find that, you can live with some doubts because you trust the instinct of your doctor.  If you don't trust your doctors gut instincts, you need to look further.</P>
<P> </P>
<P>Good luck....and I hope you feel better very very soon!</P>
<P> </P>
 
T

TonyaH

Guest
<P>I think it also depends on what organism is being fought. When Andrew is on ivs for a typical pseudomonas exacerbation he is on ivs for the standard three weeks of treatment. Lately he has been fighting mycobacterium abcessus. The first round of ivs ran 6 weeks, but now that the myco has recurred five months later, he is in the middle of another 8 weeks of ivs. </P>
<P></P>
<P>I understand that doctors have to look at science and numbers and research to decide how long to keep a patient on abx. I understand there is always the chance of growing resistant to abx. This has been the hardest part of CF for me....realizing that CF treatment is NOT an exact science. There is still so much to be discovered. I think the best thing you can do is find a doctor you can trust. If you find that, you can live with some doubts because you trust the instinct of your doctor. If you don't trust your doctors gut instincts, you need to look further.</P>
<P></P>
<P>Good luck....and I hope you feel better very very soon!</P>
<P></P>
 
T

TonyaH

Guest
<P><BR>I think it also depends on what organism is being fought. When Andrew is on ivs for a typical pseudomonas exacerbation he is on ivs for the standard three weeks of treatment. Lately he has been fighting mycobacterium abcessus. The first round of ivs ran 6 weeks, but now that the myco has recurred five months later, he is in the middle of another 8 weeks of ivs. </P>
<P></P>
<P>I understand that doctors have to look at science and numbers and research to decide how long to keep a patient on abx. I understand there is always the chance of growing resistant to abx. This has been the hardest part of CF for me....realizing that CF treatment is NOT an exact science. There is still so much to be discovered. I think the best thing you can do is find a doctor you can trust. If you find that, you can live with some doubts because you trust the instinct of your doctor. If you don't trust your doctors gut instincts, you need to look further.</P>
<P></P>
<P>Good luck....and I hope you feel better very very soon!</P>
<P></P>
 
G

Giggles

New member
Have they done another sputum culture to make sure what drugs are showing sensitive to what you are growing? Also, my docs do not go past 2 weeks on a particular drug either. The idea is you do not want to get resistant. But what they could do is give you another drug that shows will work.... Maybe you need a different drug.... I could ask about doing another sputum culture and see what will work and switch to another drug. Just not stay on the SAME drug for over 2 weeks so you do not get resistant. Good luck. It is SOOOOOOOOO frustrating to go through all these IV's and still feel like ^%$&. I hope you can get some answers and start to feel better! Hang in there and stay strong!<br>
 
G

Giggles

New member
Have they done another sputum culture to make sure what drugs are showing sensitive to what you are growing? Also, my docs do not go past 2 weeks on a particular drug either. The idea is you do not want to get resistant. But what they could do is give you another drug that shows will work.... Maybe you need a different drug.... I could ask about doing another sputum culture and see what will work and switch to another drug. Just not stay on the SAME drug for over 2 weeks so you do not get resistant. Good luck. It is SOOOOOOOOO frustrating to go through all these IV's and still feel like ^%$&. I hope you can get some answers and start to feel better! Hang in there and stay strong!<br>
 
G

Giggles

New member
Have they done another sputum culture to make sure what drugs are showing sensitive to what you are growing? Also, my docs do not go past 2 weeks on a particular drug either. The idea is you do not want to get resistant. But what they could do is give you another drug that shows will work.... Maybe you need a different drug.... I could ask about doing another sputum culture and see what will work and switch to another drug. Just not stay on the SAME drug for over 2 weeks so you do not get resistant. Good luck. It is SOOOOOOOOO frustrating to go through all these IV's and still feel like ^%$&. I hope you can get some answers and start to feel better! Hang in there and stay strong!<br>
 
P

Printer

Active member
Cindy:

I have had great luck using 7% sailine. You may want to try that for improved lung function.

Bill
 
P

Printer

Active member
Cindy:

I have had great luck using 7% sailine. You may want to try that for improved lung function.

Bill
 
P

Printer

Active member
Cindy:
<br />
<br />I have had great luck using 7% sailine. You may want to try that for improved lung function.
<br />
<br />Bill
 
C

cindylou

Guest
Thanks everyone for your comments! I'll try to address all the things that were brought up.

1. I do hypertonic saline already (though I can't tolerate more than 5%) and have been doing it for years. It does help a lot with my day to day clearness, though I don't know that it necessarily affected my numbers one way or another.

2. I don't have a choice about the doctors. There aren't many CF centers in the intermountain West, and the clinic that I go to is already 4 hours away. My husband and I are hoping to move within the next year or two, but until then, there's not really an option for treatment besides this clinic.

3. As for what bugs I'm culturing... that is a great question!!! For some bizarre reason, the lab that this clinic uses has NEVER been able to grow out my sputum. Even when I can clearly see that there is green, goupy mucus in that cup, it comes back with "normal flora"... even when my lung function is down and I am having symptoms out the wazoo! So they can't get too specific with my treatment. I am usually treated for pseudomonas, staph, and often stenotrophomonas maltophilia (which I have grown in the past) as well.

I appreciate all the responses. I'm going to call the nurse tomorrow, and though I doubt they'll listen, I am definitely encouraged to hear that I'm not the only one who feels like cutting the drugs off even if I'm not responding isn't the best idea! I react really strongly to IVs, and absolutely hate being on them, but I also really want to make sure that I can get all the way over whatever this is and enjoy the rest of my summer. Hopefully WITHOUT a hospitalization!
 
C

cindylou

Guest
Thanks everyone for your comments! I'll try to address all the things that were brought up.

1. I do hypertonic saline already (though I can't tolerate more than 5%) and have been doing it for years. It does help a lot with my day to day clearness, though I don't know that it necessarily affected my numbers one way or another.

2. I don't have a choice about the doctors. There aren't many CF centers in the intermountain West, and the clinic that I go to is already 4 hours away. My husband and I are hoping to move within the next year or two, but until then, there's not really an option for treatment besides this clinic.

3. As for what bugs I'm culturing... that is a great question!!! For some bizarre reason, the lab that this clinic uses has NEVER been able to grow out my sputum. Even when I can clearly see that there is green, goupy mucus in that cup, it comes back with "normal flora"... even when my lung function is down and I am having symptoms out the wazoo! So they can't get too specific with my treatment. I am usually treated for pseudomonas, staph, and often stenotrophomonas maltophilia (which I have grown in the past) as well.

I appreciate all the responses. I'm going to call the nurse tomorrow, and though I doubt they'll listen, I am definitely encouraged to hear that I'm not the only one who feels like cutting the drugs off even if I'm not responding isn't the best idea! I react really strongly to IVs, and absolutely hate being on them, but I also really want to make sure that I can get all the way over whatever this is and enjoy the rest of my summer. Hopefully WITHOUT a hospitalization!
 
C

cindylou

Guest
Thanks everyone for your comments! I'll try to address all the things that were brought up.
<br />
<br />1. I do hypertonic saline already (though I can't tolerate more than 5%) and have been doing it for years. It does help a lot with my day to day clearness, though I don't know that it necessarily affected my numbers one way or another.
<br />
<br />2. I don't have a choice about the doctors. There aren't many CF centers in the intermountain West, and the clinic that I go to is already 4 hours away. My husband and I are hoping to move within the next year or two, but until then, there's not really an option for treatment besides this clinic.
<br />
<br />3. As for what bugs I'm culturing... that is a great question!!! For some bizarre reason, the lab that this clinic uses has NEVER been able to grow out my sputum. Even when I can clearly see that there is green, goupy mucus in that cup, it comes back with "normal flora"... even when my lung function is down and I am having symptoms out the wazoo! So they can't get too specific with my treatment. I am usually treated for pseudomonas, staph, and often stenotrophomonas maltophilia (which I have grown in the past) as well.
<br />
<br />I appreciate all the responses. I'm going to call the nurse tomorrow, and though I doubt they'll listen, I am definitely encouraged to hear that I'm not the only one who feels like cutting the drugs off even if I'm not responding isn't the best idea! I react really strongly to IVs, and absolutely hate being on them, but I also really want to make sure that I can get all the way over whatever this is and enjoy the rest of my summer. Hopefully WITHOUT a hospitalization!
 
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