How long do you do IV antibiotics?

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cindylou

Guest
So, here is my question for tonight. I am SO frustrated. I am finishing up a 3 week course of IVs (aztreonam and tobramycin) on Tuesday. My CF center does NOT believe in continuing IVs past 2 weeks, even if there has been absolutely no change - they feel like their studies have shown that more than 10-14 days of antibiotics are unhelpful. After a year where I was admitted at every single clinic visit because my lung function never improved, I finally convinced them to give me 3 weeks. I have to argue the issue every single time I'm in, even though I can clearly prove that it made a huge difference (before I was getting admitted at every routine visit - now I get admitted only if I get a cold or something that turns into an infection). At my previous hospital, I regularly did 3-4 weeks of antibiotics. I've always been slow to metabolize/respond to medications. 3 weeks really is the minimum that works for me.<div><br></div><div>As of this weekend, I'm still feeling pretty bad and coughing up a lot of green goop. When I got discharged from the hospital last Friday (day 10), my lung function had not improved at all from my admission. To top it all off, this weekend I seem to have come down with another cold - which usually always lands me back on antibiotics. I am going to call the clinic Monday and request another week of treatment, but I am 99.9999999999% sure that they will deny me (they have in the past). </div><div><br></div><div>In my view, if I've had 3 weeks of treatment and I'm still having symptoms (cough, shortness of breath, green foul-tasting mucus) then either this treatment regimen has been wrong, or not long enough. The way I see it, that calls for continued aggressive behavior, not just sticking to the original game plan.</div><div><br></div><div>At my previous hospital, the norm was 2-4 weeks of IVs and the doctors were very sensitive to how I felt. What I am wondering is - what is the norm at your CF center? How many weeks of IVs are you usually on? What happens if you get to the end of the prescribed time and haven't improved? I just went and read a bunch of the study summaries on the CF foundation website, and the best I found there was that they don't feel there's enough information to determine an optimal length of IV treatment. Has anyone else ever read or heard of studies that found positive info about a longer treatment? What is your doctor's philosophy? </div><div><br></div><div>I would really like if next time this happened, I could take some more information to my doctors. I'm just so frustrated right now... I really want to get all the way back on my feet and have a great summer, not spend the next several months trying to recover from this!</div>
 
C

cindylou

Guest
So, here is my question for tonight. I am SO frustrated. I am finishing up a 3 week course of IVs (aztreonam and tobramycin) on Tuesday. My CF center does NOT believe in continuing IVs past 2 weeks, even if there has been absolutely no change - they feel like their studies have shown that more than 10-14 days of antibiotics are unhelpful. After a year where I was admitted at every single clinic visit because my lung function never improved, I finally convinced them to give me 3 weeks. I have to argue the issue every single time I'm in, even though I can clearly prove that it made a huge difference (before I was getting admitted at every routine visit - now I get admitted only if I get a cold or something that turns into an infection). At my previous hospital, I regularly did 3-4 weeks of antibiotics. I've always been slow to metabolize/respond to medications. 3 weeks really is the minimum that works for me.<br>As of this weekend, I'm still feeling pretty bad and coughing up a lot of green goop. When I got discharged from the hospital last Friday (day 10), my lung function had not improved at all from my admission. To top it all off, this weekend I seem to have come down with another cold - which usually always lands me back on antibiotics. I am going to call the clinic Monday and request another week of treatment, but I am 99.9999999999% sure that they will deny me (they have in the past).<br>In my view, if I've had 3 weeks of treatment and I'm still having symptoms (cough, shortness of breath, green foul-tasting mucus) then either this treatment regimen has been wrong, or not long enough. The way I see it, that calls for continued aggressive behavior, not just sticking to the original game plan.<br>At my previous hospital, the norm was 2-4 weeks of IVs and the doctors were very sensitive to how I felt. What I am wondering is - what is the norm at your CF center? How many weeks of IVs are you usually on? What happens if you get to the end of the prescribed time and haven't improved? I just went and read a bunch of the study summaries on the CF foundation website, and the best I found there was that they don't feel there's enough information to determine an optimal length of IV treatment. Has anyone else ever read or heard of studies that found positive info about a longer treatment? What is your doctor's philosophy?<br>I would really like if next time this happened, I could take some more information to my doctors. I'm just so frustrated right now... I really want to get all the way back on my feet and have a great summer, not spend the next several months trying to recover from this!
 
C

cindylou

Guest
So, here is my question for tonight. I am SO frustrated. I am finishing up a 3 week course of IVs (aztreonam and tobramycin) on Tuesday. My CF center does NOT believe in continuing IVs past 2 weeks, even if there has been absolutely no change - they feel like their studies have shown that more than 10-14 days of antibiotics are unhelpful. After a year where I was admitted at every single clinic visit because my lung function never improved, I finally convinced them to give me 3 weeks. I have to argue the issue every single time I'm in, even though I can clearly prove that it made a huge difference (before I was getting admitted at every routine visit - now I get admitted only if I get a cold or something that turns into an infection). At my previous hospital, I regularly did 3-4 weeks of antibiotics. I've always been slow to metabolize/respond to medications. 3 weeks really is the minimum that works for me.<br>As of this weekend, I'm still feeling pretty bad and coughing up a lot of green goop. When I got discharged from the hospital last Friday (day 10), my lung function had not improved at all from my admission. To top it all off, this weekend I seem to have come down with another cold - which usually always lands me back on antibiotics. I am going to call the clinic Monday and request another week of treatment, but I am 99.9999999999% sure that they will deny me (they have in the past).<br>In my view, if I've had 3 weeks of treatment and I'm still having symptoms (cough, shortness of breath, green foul-tasting mucus) then either this treatment regimen has been wrong, or not long enough. The way I see it, that calls for continued aggressive behavior, not just sticking to the original game plan.<br>At my previous hospital, the norm was 2-4 weeks of IVs and the doctors were very sensitive to how I felt. What I am wondering is - what is the norm at your CF center? How many weeks of IVs are you usually on? What happens if you get to the end of the prescribed time and haven't improved? I just went and read a bunch of the study summaries on the CF foundation website, and the best I found there was that they don't feel there's enough information to determine an optimal length of IV treatment. Has anyone else ever read or heard of studies that found positive info about a longer treatment? What is your doctor's philosophy?<br>I would really like if next time this happened, I could take some more information to my doctors. I'm just so frustrated right now... I really want to get all the way back on my feet and have a great summer, not spend the next several months trying to recover from this!
 
J

just1more

New member
We 'normally' do ~2-3 weeks depending on how he is doing. We actually are finishing up today, and the threshold his Dr used was 1 week beyond the stopping of symptoms that triggered the IV's.
 
J

just1more

New member
We 'normally' do ~2-3 weeks depending on how he is doing. We actually are finishing up today, and the threshold his Dr used was 1 week beyond the stopping of symptoms that triggered the IV's.
 
J

just1more

New member
We 'normally' do ~2-3 weeks depending on how he is doing. We actually are finishing up today, and the threshold his Dr used was 1 week beyond the stopping of symptoms that triggered the IV's.
 
C

cindylou

Guest
See, that is why I get so frustrated by my doctors' approach - whether or not you are still symptomatic, they stop the IVs. I've been told several times that things will "keep getting better after you're off," which is totally not true. I know several people who go to this same clinic who have had the same problem, and essentially everyone I know has left the hospital only to return shortly afterward because of their IV policy.
 
C

cindylou

Guest
See, that is why I get so frustrated by my doctors' approach - whether or not you are still symptomatic, they stop the IVs. I've been told several times that things will "keep getting better after you're off," which is totally not true. I know several people who go to this same clinic who have had the same problem, and essentially everyone I know has left the hospital only to return shortly afterward because of their IV policy.
 
C

cindylou

Guest
See, that is why I get so frustrated by my doctors' approach - whether or not you are still symptomatic, they stop the IVs. I've been told several times that things will "keep getting better after you're off," which is totally not true. I know several people who go to this same clinic who have had the same problem, and essentially everyone I know has left the hospital only to return shortly afterward because of their IV policy.
 
I

InhalingHope

New member
Sounds like my clinic! I never feel like my Dr is aggressive enough. I used to always have 3 weeks of orals or IVs and recently everything has switched to 2 weeks due to" new studies" and it is a constant battle because I prefer 3 weeks as well. I don't feel like I start to feel well until the end of my 2nd week and so I need that extra week to get back to baseline. Last time I needed a PICC I was only given 2 weeks of IVs and didn't feel any better so I convinced my Dr NOT to pull my PICC until I felt better. He made me stop the meds and wait 2 weeks. I wasn't feeling any better so I started them again, but it was much easier with the PICC already in place. I would fight for your 3 weeks because you know your body/health best, but if your Doc isn't cooperating maybe ask him to keep the PICC for a few extra weeks without meds and retest your PFTs. Unless of course you have a port...

The Drs may be experts, BUT this is your life and your health. When you leave the hospital you have to live with the repercussions of the IVs not running long enough and your Dr does not! I completely understand though because I am in the same boat. I recently started telling the Dr what MY plan of action is and basically not backing down which is SO out of character for me. Good luck!
 
I

InhalingHope

New member
Sounds like my clinic! I never feel like my Dr is aggressive enough. I used to always have 3 weeks of orals or IVs and recently everything has switched to 2 weeks due to" new studies" and it is a constant battle because I prefer 3 weeks as well. I don't feel like I start to feel well until the end of my 2nd week and so I need that extra week to get back to baseline. Last time I needed a PICC I was only given 2 weeks of IVs and didn't feel any better so I convinced my Dr NOT to pull my PICC until I felt better. He made me stop the meds and wait 2 weeks. I wasn't feeling any better so I started them again, but it was much easier with the PICC already in place. I would fight for your 3 weeks because you know your body/health best, but if your Doc isn't cooperating maybe ask him to keep the PICC for a few extra weeks without meds and retest your PFTs. Unless of course you have a port...

The Drs may be experts, BUT this is your life and your health. When you leave the hospital you have to live with the repercussions of the IVs not running long enough and your Dr does not! I completely understand though because I am in the same boat. I recently started telling the Dr what MY plan of action is and basically not backing down which is SO out of character for me. Good luck!
 
I

InhalingHope

New member
Sounds like my clinic! I never feel like my Dr is aggressive enough. I used to always have 3 weeks of orals or IVs and recently everything has switched to 2 weeks due to" new studies" and it is a constant battle because I prefer 3 weeks as well. I don't feel like I start to feel well until the end of my 2nd week and so I need that extra week to get back to baseline. Last time I needed a PICC I was only given 2 weeks of IVs and didn't feel any better so I convinced my Dr NOT to pull my PICC until I felt better. He made me stop the meds and wait 2 weeks. I wasn't feeling any better so I started them again, but it was much easier with the PICC already in place. I would fight for your 3 weeks because you know your body/health best, but if your Doc isn't cooperating maybe ask him to keep the PICC for a few extra weeks without meds and retest your PFTs. Unless of course you have a port...
<br />
<br />The Drs may be experts, BUT this is your life and your health. When you leave the hospital you have to live with the repercussions of the IVs not running long enough and your Dr does not! I completely understand though because I am in the same boat. I recently started telling the Dr what MY plan of action is and basically not backing down which is SO out of character for me. Good luck!
 
C

cindylou

Guest
Emma, I am actually finishing up my 3rd week. That is often enough, but sometimes (as in this case) not, and I really would like to go to 3 1/2 or 4 to see if that would help me get feeling better! And I do have a port, but my clinic is 4 hours away, so once I stop it's difficult to start again since I won't be going into the doctor right away!
 
C

cindylou

Guest
Emma, I am actually finishing up my 3rd week. That is often enough, but sometimes (as in this case) not, and I really would like to go to 3 1/2 or 4 to see if that would help me get feeling better! And I do have a port, but my clinic is 4 hours away, so once I stop it's difficult to start again since I won't be going into the doctor right away!
 
C

cindylou

Guest
Emma, I am actually finishing up my 3rd week. That is often enough, but sometimes (as in this case) not, and I really would like to go to 3 1/2 or 4 to see if that would help me get feeling better! And I do have a port, but my clinic is 4 hours away, so once I stop it's difficult to start again since I won't be going into the doctor right away!
 
E

ej0820

New member
Hey there!
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!
 
E

ej0820

New member
Hey there!
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!
 
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