Cayston or Tobi?

A

awagner

New member
<P>I have been battling a lung pseudo infection since June. I went on IV Tobi in June for low PFT they dropped to 66% they went up to 75% after IV meds were completed for 2 weeks. Well I had my clinic checkup this month and my PFT's have dropped to 66% again. I started oral abx cipro and bactrium. I hope they will help improve my lung function. If not I am sure I will have to do another round of IV abx.</P>
<P> I take inhaled tobi every other month. I am thinking that inhaled Tobi is no longer working for me. Maybe Cayston would work better? What are your experiences with switching from Tobi to Cayston? Did you PFT"s improve? If so by how much?</P>
<P> </P>
<P>Thanks for you comments I really appreciate it. I am just not sure what is causing my lung function to keep going down. I usually have great PFT's in the 80's. Starting to get very frustrated.</P>
 
A

awagner

New member
<P>I have been battling a lung pseudo infection since June. I went on IV Tobi in June for low PFT they dropped to 66% they went up to 75% after IV meds were completed for 2 weeks. Well I had my clinic checkup this month and my PFT's have dropped to 66% again. I started oralabx cipro and bactrium. I hope they willhelp improve my lung function. If not I am sure I will have todo another round of IV abx.</P>
<P>I take inhaled tobi every other month. I am thinking that inhaled Tobi is no longer working for me. Maybe Cayston would work better? What are your experiences with switching from Tobi to Cayston? Did you PFT"s improve? If so by how much?</P>
<P></P>
<P>Thanks for you comments I really appreciate it. I am just not sure what is causing my lung function to keep going down. I usually have great PFT's in the 80's. Starting to get very frustrated.</P>
 
A

awagner

New member
<P>I have been battling a lung pseudo infection since June. I went on IV Tobi in June for low PFT they dropped to 66% they went up to 75% after IV meds were completed for 2 weeks. Well I had my clinic checkup this month and my PFT's have dropped to 66% again. I started oralabx cipro and bactrium. I hope they willhelp improve my lung function. If not I am sure I will have todo another round of IV abx.</P>
<P>I take inhaled tobi every other month. I am thinking that inhaled Tobi is no longer working for me. Maybe Cayston would work better? What are your experiences with switching from Tobi to Cayston? Did you PFT"s improve? If so by how much?</P>
<P></P>
<P>Thanks for you comments I really appreciate it. I am just not sure what is causing my lung function to keep going down. I usually have great PFT's in the 80's. Starting to get very frustrated.<BR></P>
 
S

skifreek

Guest
Tobi's effects are starting to flat line for me. I went on my first month of Cayston last month and it pepped me right up. Felt great. Lets see how long that lasts on the every other month regimen.
 
S

skifreek

Guest
Tobi's effects are starting to flat line for me. I went on my first month of Cayston last month and it pepped me right up. Felt great. Lets see how long that lasts on the every other month regimen.
 
S

skifreek

Guest
Tobi's effects are starting to flat line for me. I went on my first month of Cayston last month and it pepped me right up. Felt great. Lets see how long that lasts on the every other month regimen.
 
S

scanboyd

Member
<P>I alternate Tobi and Cayston 28 days on each. When I started Cayston my FEV1 was 28 now it is 31. Have been on Cayston about a yr. and Tobi for 8-9 yrs. Maybe the Cayston made the small difference. We all know our lung function drops a little with age, they say about 10% per yr. with CF if I remember correctly. How ever the one way I think to keep it from droping so fast is to keep our lungs as clear as poss. of the thick, sticky mucous. I hydrate myself for at least one hr. prior to my morning neb. rx then I spend at least 1 hr. taking HTS, 7-8 CC and zopenx. </P>
<P>I disagree with the foks who want to hurry through the HTS and brochodilator. We need to take time and cough up as much mucous from our lung as possible. </P>
<P>I agree on doing the Cayston and or Tobi ASAP, that is why I use the Eflow with the Altera neb. for both. Tobi me takes about4-5 min., use 1/2 of the dose due to the effiency of the Altera. Have not had any IVS or hospital for at least 5 yrs. now.</P>
<P> Just as a side note I hydrate until my nose starts to run-drip a bit, know this is gross. I also increase fluids prior to afternoon and night neb. rx.</P>
<P> Prevention is better than antibiotics.</P>
<P>Exercise is also a very important part of my treatment plan. Gym 3 times a wk. for at least 2 hr. </P>
<P> </P>
<P>Good Luck awager in getting your FEV1 up.</P>
 
S

scanboyd

Member
<P>I alternate Tobi and Cayston 28 days on each. When I started Cayston my FEV1 was 28 now it is 31. Have been on Cayston about a yr. and Tobi for 8-9 yrs. Maybe the Cayston made the small difference. We all know our lung function drops a little with age, they say about 10% per yr. with CF if I remember correctly. How ever the one way I think to keep it from droping so fast is to keep our lungs as clear as poss. of the thick, sticky mucous. I hydrate myself for at least one hr. prior to my morning neb. rx then I spend at least 1 hr. taking HTS, 7-8 CC and zopenx. </P>
<P>I disagree with thefoks who want to hurry throughthe HTS and brochodilator. We need to take time and cough up as much mucous from our lungas possible.</P>
<P>I agree on doing the Cayston and or Tobi ASAP, that is why I use the Eflow with the Altera neb. for both. Tobi me takes about4-5 min., use 1/2 of the dose due to the effiency of the Altera. Have not had any IVS or hospital for at least 5 yrs. now.</P>
<P>Just as a side note I hydrate until my nose starts to run-drip a bit, know this is gross. I also increase fluids prior to afternoon and night neb. rx.</P>
<P>Prevention is betterthan antibiotics.</P>
<P>Exercise is also a very important part of my treatment plan. Gym 3 times a wk. for at least 2 hr. </P>
<P></P>
<P>Good Luck awager in getting your FEV1 up.</P>
 
S

scanboyd

Member
<P>I alternate Tobi and Cayston 28 days on each. When I started Cayston my FEV1 was 28 now it is 31. Have been on Cayston about a yr. and Tobi for 8-9 yrs. Maybe the Cayston made the small difference. We all know our lung function drops a little with age, they say about 10% per yr. with CF if I remember correctly. How ever the one way I think to keep it from droping so fast is to keep our lungs as clear as poss. of the thick, sticky mucous. I hydrate myself for at least one hr. prior to my morning neb. rx then I spend at least 1 hr. taking HTS, 7-8 CC and zopenx. </P>
<P>I disagree with thefoks who want to hurry throughthe HTS and brochodilator. We need to take time and cough up as much mucous from our lungas possible.</P>
<P>I agree on doing the Cayston and or Tobi ASAP, that is why I use the Eflow with the Altera neb. for both. Tobi me takes about4-5 min., use 1/2 of the dose due to the effiency of the Altera. Have not had any IVS or hospital for at least 5 yrs. now.</P>
<P><BR>Just as a side note I hydrate until my nose starts to run-drip a bit, know this is gross. I also increase fluids prior to afternoon and night neb. rx.</P>
<P>Prevention is betterthan antibiotics.</P>
<P>Exercise is also a very important part of my treatment plan. Gym 3 times a wk. for at least 2 hr. </P>
<P></P>
<P>Good Luck awager in getting your FEV1 up.</P>
 
I

IVWinchester79

New member
<br>I do one month Cayston, one month nothing. So Cayston every other month. When I was on Tobi, I never really felt a difference. My doctor wanted to see if I'd improve on Cayston, so we tried it for one month the first time. Then she took me off Tobi and I just do Cayston. I love it. Yeah it makes me cough when I start doing it, but it's worth it for me. I end up feeling so much better. My PFT's were good when I was on Tobi and I wasn't sick, but I feel like with Cayston, they got much better. And that's when I'm not sick. I just feel like when I'm done with the Cayston month, I almost end up crashing. Like I take it for a month and do really well, but in the middle of the off month, I get a little sick. Maybe I'm just imagining it or something, but I've thought that for a while. Hmm.
 
I

IVWinchester79

New member
<br>I do one month Cayston, one month nothing. So Cayston every other month. When I was on Tobi, I never really felt a difference. My doctor wanted to see if I'd improve on Cayston, so we tried it for one month the first time. Then she took me off Tobi and I just do Cayston. I love it. Yeah it makes me cough when I start doing it, but it's worth it for me. I end up feeling so much better. My PFT's were good when I was on Tobi and I wasn't sick, but I feel like with Cayston, they got much better. And that's when I'm not sick. I just feel like when I'm done with the Cayston month, I almost end up crashing. Like I take it for a month and do really well, but in the middle of the off month, I get a little sick. Maybe I'm just imagining it or something, but I've thought that for a while. Hmm.
 
I

IVWinchester79

New member
<br>I do one month Cayston, one month nothing. So Cayston every other month. When I was on Tobi, I never really felt a difference. My doctor wanted to see if I'd improve on Cayston, so we tried it for one month the first time. Then she took me off Tobi and I just do Cayston. I love it. Yeah it makes me cough when I start doing it, but it's worth it for me. I end up feeling so much better. My PFT's were good when I was on Tobi and I wasn't sick, but I feel like with Cayston, they got much better. And that's when I'm not sick. I just feel like when I'm done with the Cayston month, I almost end up crashing. Like I take it for a month and do really well, but in the middle of the off month, I get a little sick. Maybe I'm just imagining it or something, but I've thought that for a while. Hmm.
 
S

stephen

Guest
Give Cayston a try. I have been using Cayston (Aztreonam) for over almost four years and found it to be very effective. Stopped TOBI because is was affecting my hearing!

Be well.

Stephen,
69 years old with Cf, FEV1 about 48%, otherwise in very good healh
 
S

stephen

Guest
Give Cayston a try. I have been using Cayston (Aztreonam) for over almost four years and found it to be very effective. Stopped TOBI because is was affecting my hearing!

Be well.

Stephen,
69 years old with Cf, FEV1 about 48%, otherwise in very good healh
 
S

stephen

Guest
Give Cayston a try. I have been using Cayston (Aztreonam) for over almost four years and found it to be very effective. Stopped TOBI because is was affecting my hearing!
<br />
<br />Be well.
<br />
<br />Stephen,
<br />69 years old with Cf, FEV1 about 48%, otherwise in very good healh
<br />
<br />
 
R

rubyroselee

New member
Hi there,

I have been using Tobi (and compounded tobramycin) for many, many years. I rely on that stuff so much because it has really helped me stay healthy all these years by keeping my pseudo at bay. I have been on a non-traditional cycle of 3 weeks on/1 week and that is what worked best for me. However, at my last clinic appointment I decided to try doing alternating months of tobra and Cayston. I am on the Cayston now and feel really great! I can tell that I pretty much have no mucus right now. But I do have the coughing side effect from Cayston (but it's just a dry cough). So I think I can deal with the dry cough in order to get rid of the wet one ...lol. But overall, I am quite pleased with Cayston and I am looking forward to my next appointment to see if it's helped my PFTs at all.
 
R

rubyroselee

New member
Hi there,

I have been using Tobi (and compounded tobramycin) for many, many years. I rely on that stuff so much because it has really helped me stay healthy all these years by keeping my pseudo at bay. I have been on a non-traditional cycle of 3 weeks on/1 week and that is what worked best for me. However, at my last clinic appointment I decided to try doing alternating months of tobra and Cayston. I am on the Cayston now and feel really great! I can tell that I pretty much have no mucus right now. But I do have the coughing side effect from Cayston (but it's just a dry cough). So I think I can deal with the dry cough in order to get rid of the wet one ...lol. But overall, I am quite pleased with Cayston and I am looking forward to my next appointment to see if it's helped my PFTs at all.
 
R

rubyroselee

New member
Hi there,
<br />
<br />I have been using Tobi (and compounded tobramycin) for many, many years. I rely on that stuff so much because it has really helped me stay healthy all these years by keeping my pseudo at bay. I have been on a non-traditional cycle of 3 weeks on/1 week and that is what worked best for me. However, at my last clinic appointment I decided to try doing alternating months of tobra and Cayston. I am on the Cayston now and feel really great! I can tell that I pretty much have no mucus right now. But I do have the coughing side effect from Cayston (but it's just a dry cough). So I think I can deal with the dry cough in order to get rid of the wet one ...lol. But overall, I am quite pleased with Cayston and I am looking forward to my next appointment to see if it's helped my PFTs at all.
 
A

awagner

New member
Thank you for all of your comments. I really learned alot. I will be starting Cayston next month and alternanting with Tobi. My lung function went up to 71% that is good news. I have been exercising and think this is key to keeping me healthy.
 
A

awagner

New member
Thank you for all of your comments. I really learned alot. I will be starting Cayston next month and alternanting with Tobi. My lung function went up to 71% that is good news. I have been exercising and think this is key to keeping me healthy.
 
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