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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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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 13, 2022
In reply to @cila "I used 7% but I cough every time I start the saline. I used to not..." + (show)
@cila

I used 7% but I cough every time I start the saline. I used to not bother me but lately I cough so much that takes a long time to do it. Thanks for your help. Is pure guaifenesin is otc or prescription? Cila

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Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I think the 7% irritates my throat more than my lungs.
Sue

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3 replies
cila | @cila | Feb 13, 2022
In reply to @sueinmn "Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I..." + (show)
@sueinmn

Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I think the 7% irritates my throat more than my lungs.
Sue

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I used to not cough but now I do. Thanks Sue. Cila

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Jennifer | @megan123 | Feb 13, 2022
In reply to @tlynng79 "I have been dealing with this for years and finally had someone test my sputum and..." + (show)
@tlynng79

I have been dealing with this for years and finally had someone test my sputum and consistently find pseudomonas aeruginosa. I have exhausted all tests that I know, even did every genetic test possible with everything negative. I am now on Azithromycin 250mg daily to function, but this is taking so much of my life away and I am still with no answers why. Are there any other tests that can be done? Mycobacterium Gordonae and haemophilus influenzae were also found. Should I seek more help from the Mayo Clinic that maybe I’m not getting?

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@tlynng..I have been nebulizing Colistin every other month for 3 years to keep the pseudo at bay..it’s been a life savour

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1 reply
tlynng79 | @tlynng79 | Feb 14, 2022
In reply to @megan123 "@tlynng..I have been nebulizing Colistin every other month for 3 years to keep the pseudo at..." + (show)
@megan123

@tlynng..I have been nebulizing Colistin every other month for 3 years to keep the pseudo at bay..it’s been a life savour

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Have you had any side effects from it?

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1 reply
poodledoc | @poodledoc | Feb 14, 2022
In reply to @sueinmn "Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I..." + (show)
@sueinmn

Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I think the 7% irritates my throat more than my lungs.
Sue

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I also find sometimes the 7% saline to be somewhat irritating to my lungs especially after extended exercise. I found a box of 0.9% normal saline on Amazon and on days my lungs feel irritated will add 1-2 ml to the 4 ml of 7% and it works very well. And it is OTC and inexpensive. https://www.amazon.com/gp/product/B002YRY3HI/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1 Bill

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dc1950 | @dc1950 | Feb 14, 2022
In reply to @sueinmn "Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I..." + (show)
@sueinmn

Guaifenesin is OTC. When I am coughing a lot, I switch to 3% saline. Sometimes I think the 7% irritates my throat more than my lungs.
Sue

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Hi Sue. Where do you find the 3% saline? Can I request it through my pharmacy?

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1 reply
Jennifer | @megan123 | Feb 14, 2022
In reply to @tlynng79 "Have you had any side effects from it?" + (show)
@tlynng79

Have you had any side effects from it?

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@thynng..none what so ever. Nebulize every other month

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Mentor
Sue, Volunteer Mentor | @sueinmn | Feb 14, 2022
In reply to @dc1950 "Hi Sue. Where do you find the 3% saline? Can I request it through my pharmacy?" + (show)
@dc1950

Hi Sue. Where do you find the 3% saline? Can I request it through my pharmacy?

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I have prescriptions for both 3% & 7% and fill them at the same time. In the winter, I am good to alternate doses. If I use 7% too often, I cough too hard without any production.
Sue

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1 reply
dc1950 | @dc1950 | Feb 14, 2022
In reply to @sueinmn "I have prescriptions for both 3% & 7% and fill them at the same time. In..." + (show)
@sueinmn

I have prescriptions for both 3% & 7% and fill them at the same time. In the winter, I am good to alternate doses. If I use 7% too often, I cough too hard without any production.
Sue

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That’s interesting. I’ll ask my DR about that. Thank you

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dc1950 | @dc1950 | Feb 15, 2022
In reply to @rits "Hi gang, I would appreciate some advice regarding pseudomonas treatment. I picked up this nasty bugger..." + (show)
@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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I just started my second 28 day cycle of tobramycin nebulized. Does anyone get hoarse? My throat doesn’t really hurt but just feels irritated and having a lot of drainage and really tired. Thanks in advance ,Donna

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