Should 4+ Pseudomonas be treated?

Posted by fdixon63 @fdixon63, Jul 7 9:31am

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?

@fdixon63 Sorry to hear you are having trouble kicking the pseudomonas. It can be tough – took my husband & me each 3 courses of different antibiotics to get rid of it, but so far no reoccurence in 2 years. I'm going to bring @windwalker into the discussion as I know she has dealt with this.
Your doctor's recommendation aligns with what some of us are seeing recently – less jumping in immediately with antibiotics when infections show up but are asymptomatic. For example, I still test positive for MAC, but have been off antibiotics for 7 months, managing only with 7% saline.
Sue

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fdixon …… I too have a pseudomonas problem. I've never had a report that said 3+, 4+ or anything like that. The sputum tests I do just say "many" — so I don't know how that falls into your category. I've been on toby for over a year and am not getting rid of them. I am discouraged about that too. I have difficulty taking it due to shortness of breath but am now doing two weeks on and two weeks off. I cough all the time — never clear — always green and have no trouble coughing it up whether or not I do anything. I do nebulize 3% saline twice daily and albuterol twice daily plus the toby. I'm wondering if anyone has any other med that has helped to rid pseudomonas. My doctor is with Mayo's in Rochester (for what that's worth). Appreciate all comments concerning pseudomonas.

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@sueinmn

@fdixon63 Sorry to hear you are having trouble kicking the pseudomonas. It can be tough – took my husband & me each 3 courses of different antibiotics to get rid of it, but so far no reoccurence in 2 years. I'm going to bring @windwalker into the discussion as I know she has dealt with this.
Your doctor's recommendation aligns with what some of us are seeing recently – less jumping in immediately with antibiotics when infections show up but are asymptomatic. For example, I still test positive for MAC, but have been off antibiotics for 7 months, managing only with 7% saline.
Sue

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sueinmn ……. would you be so kind as to share which antibiotics you used in treating pseudomonas in your household? I'm hoping for something besides toby in that it doesn't seem to be working for me

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@auntnanny 2 different chlorquinolones, doxycycline, azithromycin & inhaled tobramycin – who knows what finally knocked it out after all of that? I was on one of the chloroquins, with the toby for 6 weeks. My husband used the other antibiotics because he cannot have chloroquins due to tendon issues.
Sue

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The positive lab findings come back to show 1+ through 4+. The 4+ is the worse on the scale. First tested 1 plus in March 2019 and was given Levofloxacin. I was not tested again until Sept 2019 and had three different ?strains and all were 4+ so obvious Levofloxacin was not effective. I had a PICC line with Ciftazidime for 2 weeks and Tobramycin for 28 days. Five months later had two ?strains–one 4+ and one 3+. Given Tobramycin for 28 days. Again in March 2020 and again Tobramycin 28 days. Latest sputum results in June 2020 one 4+. Wish we could all get something to work. Urg. Thanks to everyone who is responding–more, more sharing.

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sueiinmn thank you for your note. Yes, hard to tell which might have been the right one but happy for you that it worked

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fdixon53 — thank you for sharing your info…… it seems toby has not been a cure-all for you either. But you took it only 28 days and then off for several months? I had thought it was a continuous drug until pseudomonas were gone. Certainly, mine are not gone. Thank you again

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The doctor did not say anything about doing more than the 28 days. That's why I reached out to the group. We all have different doctors and apparently many opinions on how to treat. Thanks to the group. We're all about caring and sharing. God bless.

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@migizii I have been fortunate to not have experienced this (yet) but got an email yesterday from NTM Info & Research that had an article that new NTM guidelines have just been released. Perhaps you can find it online as I have no idea how to get it from my email to this site…..

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@migizii

@migizii I have been fortunate to not have experienced this (yet) but got an email yesterday from NTM Info & Research that had an article that new NTM guidelines have just been released. Perhaps you can find it online as I have no idea how to get it from my email to this site…..

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Migizil, Here is that article. https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf Pseudomonas is often seen in conjunction with the various NTMs, and some of the antibiotics mentioned for NTM will also kill Pseudomonas.

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Hi there. I was treated for pseudomonas in 2016 with 28 day tobramycin. My coughing ceased after it was done and I tested negative. I was still on my preventative antibiotic regimen of then doing bi-monthly ciprofloxacin and toby every other month. That kept the pseudo away. There has been success in combining the toby treatment with a med called 'Glatiramer Acetate' and is marketed as 'Copaxone'. It showed a 71% efficacy when combined with tobramycin. This med seems to boost the effectiveness. (@auntnanny) Most doctors want patients that nebulize saline to do it twice a day; once in the morning and once in the evening. Is there a particular reason that you are doing it only once a day?

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@auntnanny

sueinmn ……. would you be so kind as to share which antibiotics you used in treating pseudomonas in your household? I'm hoping for something besides toby in that it doesn't seem to be working for me

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Hello Jan! Have you asked your dr about adding 'Copaxone' to your toby regimen? That med supposedly boosts the effecacy 71%. It could be worth a try.

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windwalker No, I've not heard of it nor has it been mentioned but I was just reading your first post and "saved" it because I plan to ask Mayos in Rochester about it. Thanks so much for sharing that bit. You are still alternating toby and the antibiotic, right? I have difficulty breathing after a few days of toby. So now, I've been given two more meds to nebulize for that problem. Yupelri and Perforomist . Have started those and have broken out with a rash — so have now stopped them. Will try again after rash is totally gone — just to see if that is indeed the problem. Goodness….. it is always something.

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@auntnanny

windwalker No, I've not heard of it nor has it been mentioned but I was just reading your first post and "saved" it because I plan to ask Mayos in Rochester about it. Thanks so much for sharing that bit. You are still alternating toby and the antibiotic, right? I have difficulty breathing after a few days of toby. So now, I've been given two more meds to nebulize for that problem. Yupelri and Perforomist . Have started those and have broken out with a rash — so have now stopped them. Will try again after rash is totally gone — just to see if that is indeed the problem. Goodness….. it is always something.

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I am so sorry you continue to have such difficulties with treating that darn pseudo. Had you been using albuterol to open your airways prior to doing the toby?

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@auntnanny

windwalker No, I've not heard of it nor has it been mentioned but I was just reading your first post and "saved" it because I plan to ask Mayos in Rochester about it. Thanks so much for sharing that bit. You are still alternating toby and the antibiotic, right? I have difficulty breathing after a few days of toby. So now, I've been given two more meds to nebulize for that problem. Yupelri and Perforomist . Have started those and have broken out with a rash — so have now stopped them. Will try again after rash is totally gone — just to see if that is indeed the problem. Goodness….. it is always something.

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You know, I began to have trouble on the toby too. It would get kinda bad after two weeks on it, then I would press on and be so much better after the 28 days. I would always say to myself, it's going to get bad before it gets better. It would depend on how severe your symptoms are on whether I recommend staying on it. My symptoms were mainly uncomfortable, like lungs feeling very wet and congested.

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