Should 4+ Pseudomonas be treated?

Posted by fdixon63 @fdixon63, Jul 7, 2020

Good morning to all. I'm wondering what experiences you've had regarding treatment on recurring Pseudomonas. I had just finished treatment for 3+ Stenotrophomonas Maltophilia and wanted to know if the treatment had gotten rid of it. I did not hear from my pulmonary doc about results of my last sputum--testing had begun on June 19th. Last Friday I went on the portal and this is what I found. FINAL REPORT: 4+ Pseudomonas aeruginosa. This is the 5th Pseudomonas since March 2019. I had a result of
3+ Pseudomonas Aeruginosa in March this year and I was put on Tobramycin for
28 days. Now I show 4+ and have not heard from anyone from the doctor's office. I contacted the doctor by portal to question if treatment was indicated.
I feel OK, no noticeable shortness of breath, am nebulizing 7% Sod. Chl. once a day, appetite not great but OK (basically normal for me). I rarely cough up anything of color after nebing--maybe pale yellow, if at all. Over the last week or so (a few times a day) I have just a very slight dry cough. Otherwise am asymptomatic. The doctor responded "I would say at this point that we should not treat unless something changes clinically. We can discuss more at your next appointment but please let me know if your symptoms change.” Any experiences out there to share?

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@auntnanny

rits.... I don't know if this will be helpful but I've had pseudomonas consistently for a few years. Could not tolerate the toby and there seemed to be nothing else. A pulmonologist in Tulsa put me on azithromicin 3 times weekly and surprisingly, the phlegm production (which was always heavy and green) has decreased at least 90%. I've been on this for about six months. Mayo pulmonologist would rather I not take it because it may be needed for MAC at some point. But I just keep hanging on. It's absolutely wonderful to not be coughing and producing green stuff all day long. I do saline, albuterol, buesomide (sp) performist, and yupalri through the nebulizer daily. Takes at least 90 minutes to do that and like you -- I hate it..... but this program (for the time being) has virtually stopped the coughing and production and it's the best I've felt in years. Just saying........ (of course it can change at any time).

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Thanks aunt nanny. I'm glad that you found treatment that works for you. A problem is that azithromycin should not be taken alone because it is one of the best drugs for MAC and mycobacteria become resistant to it. Also, it causes digestive problems in some people. I will definitely discuss your treatment with Dr McShane.

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@rits

Thanks egayle. I have been doing some form of sputum treatment and airway clearance for 10 years. I'm sick of it but I know I need to do it. While I have always had a great deal of sputum, it has been manageable and I currently have no problem bringing up sputum. Actually, it's the opposite. It comes up all day long, only stopping if I sit or lie down. Because I've never had anywhere near this much or so many thick globs, I think it is from the pseudomonas because excess, thick unmanageable sputum is the first symptom listed..

Sue and I think one or two other members responded to a previous message I posted which was moved to a different group. I plan to ask to be put on an antibiotic for it. I guess I'm hoping someone who hsd been treated for it will say. "Go for it." or "No
Don't do it."

Thanks for reading and responding.

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@rits - This is a tough question.

I know when I had pseudomonas, the sputum production was copious - worse than any other pneumonia I ever had. Mine was treated with levaquin, azithromycin, something else, and finally inhaled Tobramycin to kick it. Then I spent over 1 1/2 years on the Big 3, and it hasn't been back. We were at the doc this AM and I told him my lungs felt "juicy" but he said they sounded ok. I admit I haven't nebbed yet today, so I'll do it after lunch.

But based on how you are feeling, it is probably time for you "bite the bullet" and go for a CT scan. We have had good luck going to the local imaging center instead of the hospital - their precautions were superb. Seeing how your lungs look will help your doc make the best decision!
Sue

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@rits

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova - sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

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CT scans are super quick. I have had to have several since Covid, and I schedule them to be first appointment in morning. I do not feel nearly as exposed as most places.

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@rits

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova - sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

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@rits I just found this article on Phage therapy for Pseudomonas from Cystic Fibrosis News today. Unfortunately not something available today but maybe in the near future. Not an antibiotic, YEAH!!!!. https://cysticfibrosisnewstoday.com/2021/01/12/phase-1-2-trial-at-yale-testing-phage-therapy-chronic-p-aeruginosa-infections-in-cf/ Phage therapy is also being tested for treatment of Mycobacterial infections. https://www.genengnews.com/insights/phage-therapy-win-mycobacterium-infection-halted/

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@rits

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova - sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

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Hi Rits... I too have pseudomonas that is colonized..I would ask the dr to give you Ciprofloxacin for 2 weeks, to try and get rid of it..it sounds like you are also have symptoms.. I get sputum turning green tightness in my chest, and trouble breathing..doing nothing isn’t how I would be dealing with it..Cipro and levaquin are first meds given for 2 weeks.. if it has shown in your sputum 3 times, as well as symptoms it should b3 tim3 to try Cipro for starters

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@rits

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova - sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

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Hi Rita. I am no physician as you well know, but it appears to me that you are not being left on the antibiotic long enough to truly stamp out the pseudomonas. I was put on tobramycin in 2016 to treat mine. I felt better and all coughing ceased after one month on it, but my dr at Mayo would not take me off off it until the spring of 2020. Remember, the reason you are suseptible to pseudomonas doesn't go away with medication. We have damaged lungs and will forever be fighting against opportunistic pathegens. I had been on both cipro and tobramycin for four yrs to get it good and gone.

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@rits

Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger while hospitalized for a rhinovirus (cold) for 17 days. It first showed up in April 2019 and continued showing up in the monthly samples I brought in while I was being treated for MAC. It disappeared in September 2019. I think it didn't like Arikayce which I began taking in August,

I stopped all MAC treatment at the end of May 2020 almost 15 months after I started and a year after it vanished from my samples. Unfortunately, pseudomonas reappeared in my June 2020 sample (mailed 4/20), my August sample (mailed 7/27), and most recently 11/20 (mailed 10/20). I had a video appointment last week with Dr. McShane who is treating my various lung organisms from UT Tyler. My breathing has been horrible and getting worse for months with lots of shortness of breath and almost constant thick, gross but clear, sputum. Is it the pseudomonas (or the bosa nova - sorry couldn't resist Thumper's influence).

Dr. McShane is reluctant to treat. I had a lot of trouble with the oral antibiotics, mainly digestive, that has improved only over the last few weeks. I had a great deal of trouble with Arikayce which affected my breathing so Dr, McShane is also reluctant to prescribe an inhaled drug. My pseudomonas is susceptible to every antibiotic on the list, But, she said that she has been "chasing bacteria" like pseudomonas since she first started practicing in this area in 2008. She said I could do a course of antibiotic and the numbers would go down enough so that it wouldn't show up in the report. However, soon after stopping the antibiotic, the numbers would go up again in a vicious cycle,

Instead, she prescribed a prednisone burst which has given me loads of energy but seems to have made the humongous amount of sputum worse, I'm breathing through cement! I'm finishing the burst tomorrow and promised I would report on how I'm doing. Dr. McShane is brilliant and probably the best doctor I have ever had and, believe me, I have been treated by A LOT of doctors. If I tell her that I want to try treating it, I believe she will prescribe something although we aren't sure that it is the pseudomonas causing this. Also, I am overdo for a chest ct scan which would be helpful but I am too stressed to have any tests until after I have confidence I will be safe. That, hopefully, will be in a couple of months.

I hope Terri and others who have a pseudomonas history will chime in. Should I push for treatment? Thanks

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Hi all, what Aerobika device should I buy

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@megan123

Hi Rits... I too have pseudomonas that is colonized..I would ask the dr to give you Ciprofloxacin for 2 weeks, to try and get rid of it..it sounds like you are also have symptoms.. I get sputum turning green tightness in my chest, and trouble breathing..doing nothing isn’t how I would be dealing with it..Cipro and levaquin are first meds given for 2 weeks.. if it has shown in your sputum 3 times, as well as symptoms it should b3 tim3 to try Cipro for starters

Jump to this post

Thanks to you,Terri and others for following up. Since I posted this, I talked to my doctor. She has been chasing bacteria like pseudomonas since she first became interested in bacteria in 2008. She said that after a course of antibiotics the numbers would go way down but, after stopping, eventually they would come up again. The symptoms I describe are consistent with my severe copd and not the pseudomonas. If I develop symptoms and/or the pseudomonas grows much more we will treat.

I had mixed feelings about treating because the copd is chronic and progressive and I am already taking all the treatments. Having something that can actually be treated rather than managed appeals to me. However I am only now having some relief from the digestive issues caused by the MAC antibiotics which were stopped at the end of May 2020. Taking an inhaled antibiotic is bad for my fragile copd lungs.

So no treatment now.

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@rvan

Hi all, what Aerobika device should I buy

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Hello, @rvan - I am not quite sure what you mean - this is a picture & description of the only Aerobika I am familiar with. https://www.nationaljewish.org/conditions/medications/airway-clearance-techniques-devices/using-the-aerobika

There is another PEP (Positive Expiratory Pressure) device that is also often prescribed. You can read about it here: https://www.nationaljewish.org/conditions/medications/airway-clearance-techniques-devices/acapella-dm-dh
Some doctors recommend one over the other, others leave it up to the patient's choice.

Here is my experience with both: I originally was prescribed the Green Acapella device, but I was using 2 different nebulised solutions at the time, and wanted to be able to do both airway clearance and nebs at the same time, so switched to the Aerobika. I found that, for my lungs, it was too difficult to do both at once, so I still do them separately.

I continue to use the Aerobika instead of the Acapella because:
1) I can completely disassemble the Aerobika for thorough cleaning, but only do rudimentary cleaning of the Acapella device. Since I am susceptible to MAC and Pseudomonas, to me more cleaning is better.
2) I can also more easily adjust the pressure on the Aerobika, which for me is good because my lung conditions varies quite a bit day-to-day.
3) Finally, the more compact Aerobiks fits into my pack better for travel.

In the end, it is a matter of personal preference...
Sue

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@rits

Thanks to you,Terri and others for following up. Since I posted this, I talked to my doctor. She has been chasing bacteria like pseudomonas since she first became interested in bacteria in 2008. She said that after a course of antibiotics the numbers would go way down but, after stopping, eventually they would come up again. The symptoms I describe are consistent with my severe copd and not the pseudomonas. If I develop symptoms and/or the pseudomonas grows much more we will treat.

I had mixed feelings about treating because the copd is chronic and progressive and I am already taking all the treatments. Having something that can actually be treated rather than managed appeals to me. However I am only now having some relief from the digestive issues caused by the MAC antibiotics which were stopped at the end of May 2020. Taking an inhaled antibiotic is bad for my fragile copd lungs.

So no treatment now.

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Hi Rita. What about oral antibiotics to treat the pseudomonas?

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