momofJames
New member
I am looking for any comments from anyone that has used Cayston (aztreonam) - new inhaled drug. How have results been. Also has anyone out there been diagnosed with e coli in the lungs, If so what was your treatment?
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Cayston
- Thread starter momofJames
- Start date
momofJames
New member
I am looking for any comments from anyone that has used Cayston (aztreonam) - new inhaled drug. How have results been. Also has anyone out there been diagnosed with e coli in the lungs, If so what was your treatment?
momofJames
New member
I am looking for any comments from anyone that has used Cayston (aztreonam) - new inhaled drug. How have results been. Also has anyone out there been diagnosed with e coli in the lungs, If so what was your treatment?
Hi,
I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
Hi,
I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
Hi,
<br />
<br />I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
<br />
<br />Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
<br />
<br />I'm using Cayston right now. I'm on about day 25 so I'm nearing the end of the 28 day cycle. I have problems with Tobi (shortness of breath, wheezing, etc.) but so far have experienced no negative side effects with Cayston. I'm feeling pretty well and think I can tell that it is helping. I go for PFT's next Monday so I'm not sure where I'm at as far as that goes, but will know next week. I'm hopeful my PFT's will have increased.
<br />
<br />Sorry, I don't know anything about e-coli in the lungs so I can't be of any help there!
B
bethylove
Guest
I'm also on my last few days of Cayston, actually tomorrow will be day 28 and I have loved all 28 days. Before starting it I was ready to head in to clinic to see about a tune up in the very very near future, but a few days after starting Cayston a lot of my problems seem to have lessoned - by a large margin! I stopped getting the fevers I was getting, I stopped my morning coughing/throwing up fits, and I just overall felt awesome. My appetite came back and everything. I have no doubt in my mind that it was being able to deliver an antibiotic so effectively into the lungs and again, no doubt in my mind that my PFTs went up while on cayston. Or at least stopped plummeting.(but I strongly feel they went up) I didn't have any PFTs while on Cayston but I have PFTs in 2 weeks (for which I'll start tobi again) and I'm very anxious to see if my numbers have increased or at least stayed the same. =) So far its my favorite med -- one I actually looked forward to taking. Imagine that.
I personally have no experience with E-coli so I'm no help in that department either.
I personally have no experience with E-coli so I'm no help in that department either.
B
bethylove
Guest
I'm also on my last few days of Cayston, actually tomorrow will be day 28 and I have loved all 28 days. Before starting it I was ready to head in to clinic to see about a tune up in the very very near future, but a few days after starting Cayston a lot of my problems seem to have lessoned - by a large margin! I stopped getting the fevers I was getting, I stopped my morning coughing/throwing up fits, and I just overall felt awesome. My appetite came back and everything. I have no doubt in my mind that it was being able to deliver an antibiotic so effectively into the lungs and again, no doubt in my mind that my PFTs went up while on cayston. Or at least stopped plummeting.(but I strongly feel they went up) I didn't have any PFTs while on Cayston but I have PFTs in 2 weeks (for which I'll start tobi again) and I'm very anxious to see if my numbers have increased or at least stayed the same. =) So far its my favorite med -- one I actually looked forward to taking. Imagine that.
I personally have no experience with E-coli so I'm no help in that department either.
I personally have no experience with E-coli so I'm no help in that department either.
B
bethylove
Guest
I'm also on my last few days of Cayston, actually tomorrow will be day 28 and I have loved all 28 days. Before starting it I was ready to head in to clinic to see about a tune up in the very very near future, but a few days after starting Cayston a lot of my problems seem to have lessoned - by a large margin! I stopped getting the fevers I was getting, I stopped my morning coughing/throwing up fits, and I just overall felt awesome. My appetite came back and everything. I have no doubt in my mind that it was being able to deliver an antibiotic so effectively into the lungs and again, no doubt in my mind that my PFTs went up while on cayston. Or at least stopped plummeting.(but I strongly feel they went up) I didn't have any PFTs while on Cayston but I have PFTs in 2 weeks (for which I'll start tobi again) and I'm very anxious to see if my numbers have increased or at least stayed the same. =) So far its my favorite med -- one I actually looked forward to taking. Imagine that.
<br />
<br />I personally have no experience with E-coli so I'm no help in that department either.
<br />
<br />I personally have no experience with E-coli so I'm no help in that department either.
mom2lillian
New member
Bethy - you may want to consider alternating TOBI with colistin, I recently switched off of TOBI to colistin and was having much better results now I am trying cayston. I dont have plans to regularly alternate but if I did it wout by colistin.
Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
mom2lillian
New member
Bethy - you may want to consider alternating TOBI with colistin, I recently switched off of TOBI to colistin and was having much better results now I am trying cayston. I dont have plans to regularly alternate but if I did it wout by colistin.
Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
mom2lillian
New member
Bethy - you may want to consider alternating TOBI with colistin, I recently switched off of TOBI to colistin and was having much better results now I am trying cayston. I dont have plans to regularly alternate but if I did it wout by colistin.
<br />
<br />Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
<br />
<br />Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
<br />
<br />Day 3 of cayston here, too early to say anything, I am in a sense giving myself a 'mini' tune up since I went directly from colistin to cayston witout an 'off' month which I normally would have. So, that being said, I would expect to be doing well/feeling great and not getting much up. I had a large amount dark green I have gotten up already which is abnormal for me. Too early to tell anythign for sure but its looking good.
<br />
<br />Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote></div>
Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote></div>
Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote>
Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote>
Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mom2lillian</b></i>
<br />
<br />
<br />
<br />Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote>
<br />
<br />Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
<br />
<br />
<br />
<br />Now I just need to get the washing down and not have my counter look like a dishwashign factory--pasta pot for the regulare nebs, dishes water and alcohol for altera, baby bottle rack, towels, sterilizer, its a bit much.</end quote>
<br />
<br />Exactly!! Our kitchen doesn't have much counter space to begin with and then with this operation it's just ridiculous! LOL.
I've been tempted not to respond to this thread because I have not concluded yet whether Cayston will be a successful prophylactic antibiotic yet that keeps me from exacerbating. In fact, we are still determining if I am not having a possible adverse event from it. But if I'm going through this others might be too so I thought I'd share...
I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
I've been tempted not to respond to this thread because I have not concluded yet whether Cayston will be a successful prophylactic antibiotic yet that keeps me from exacerbating. In fact, we are still determining if I am not having a possible adverse event from it. But if I'm going through this others might be too so I thought I'd share...
I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
I've been tempted not to respond to this thread because I have not concluded yet whether Cayston will be a successful prophylactic antibiotic yet that keeps me from exacerbating. In fact, we are still determining if I am not having a possible adverse event from it. But if I'm going through this others might be too so I thought I'd share...
<br />
<br />I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
<br />
<br />My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
<br />
<br />Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
<br />
<br />I am on my second month of Cayston with 21 days of IVs between. It is deduced that the first month I did Cayston I was already exacerbating too much for it to help me recover because although I felt better symptom wise my pfts sucked after completing the 28 days. For me, not for everyone, Cayston and other inhaled abx are ONLY a prophylactic abx. If I'm sick then I need to bring out the IV big guns. So we started me on IVs. After the 21 days of IVs I caught a cold. I was on Colistin because I wasn't elgible to buy Cayston again in such a short time frame. I began to have wheezing and SOB and increased mucus. Since it had been such a short time since IVs and since I never wheeze we suspected inflammation. I did a Prednisone taper while also starting Cayston again. I went for pfts after 1.5 wks of Cayston. Again, nothing remarkable. I'm performing middle of the road FEV1 wise 64% (not my worst (59%) not my best (67%)).
<br />
<br />My doctor and I are hell bent on not letting me loose any lung function with 770 around the corner for me (Oct. 13 I change to OLE (Open label extension)!! He'd like to start me on IVs which would mean stopping Cayston. With a beach vacation in a weeek and a half. I am going to finish out the Cayston and re-evaluate when I get home from vaca. The sea air always helps!
<br />
<br />Will Cayston help me get to Oct 13 healthy? I don't have the answer. Will I even need to take Cayston once I start 770...I don't think so eventually since in Ph. 2B after 28 days I had white to clear mucus. I can't wait to see the results of Ph. 3.
mamaScarlett
Active member
Its a bit too soon for me to tell how Cayston affected me. I only did one month of it so far.
Within a week of starting it, I felt so much better. My morning spasms just stopped. Unfortunately this past month was one of the most stressful months I've had due to circumstances out of my control, and by the end of the month, my lungs were feeling it.
So I could say that if it wasn't for me being on Cayston, I'm SURE I would've gotten sick this month. I wasn't able to get a post pft to asses where I'm at. When I'm that badly stressed, there's no point in me having a pft done bc I know it won't be good.
I'm sure Cayston helped me this past month, but how much I don't know. One thing, its not any miracle, not yet at least.
Within a week of starting it, I felt so much better. My morning spasms just stopped. Unfortunately this past month was one of the most stressful months I've had due to circumstances out of my control, and by the end of the month, my lungs were feeling it.
So I could say that if it wasn't for me being on Cayston, I'm SURE I would've gotten sick this month. I wasn't able to get a post pft to asses where I'm at. When I'm that badly stressed, there's no point in me having a pft done bc I know it won't be good.
I'm sure Cayston helped me this past month, but how much I don't know. One thing, its not any miracle, not yet at least.
mamaScarlett
Active member
Its a bit too soon for me to tell how Cayston affected me. I only did one month of it so far.
Within a week of starting it, I felt so much better. My morning spasms just stopped. Unfortunately this past month was one of the most stressful months I've had due to circumstances out of my control, and by the end of the month, my lungs were feeling it.
So I could say that if it wasn't for me being on Cayston, I'm SURE I would've gotten sick this month. I wasn't able to get a post pft to asses where I'm at. When I'm that badly stressed, there's no point in me having a pft done bc I know it won't be good.
I'm sure Cayston helped me this past month, but how much I don't know. One thing, its not any miracle, not yet at least.
Within a week of starting it, I felt so much better. My morning spasms just stopped. Unfortunately this past month was one of the most stressful months I've had due to circumstances out of my control, and by the end of the month, my lungs were feeling it.
So I could say that if it wasn't for me being on Cayston, I'm SURE I would've gotten sick this month. I wasn't able to get a post pft to asses where I'm at. When I'm that badly stressed, there's no point in me having a pft done bc I know it won't be good.
I'm sure Cayston helped me this past month, but how much I don't know. One thing, its not any miracle, not yet at least.