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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@dc1950

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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Way past hoarse - I lost my voice! But about a month after I finished treatment, it came back okay. One thing I do need to be cautious about now is overuse - I tend to get hoarse teaching a 3 hour class when projecting my voice in a larger room.
Sue

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@sueinmn

Way past hoarse - I lost my voice! But about a month after I finished treatment, it came back okay. One thing I do need to be cautious about now is overuse - I tend to get hoarse teaching a 3 hour class when projecting my voice in a larger room.
Sue

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Thanks Sue. My first 28 days I had a bit of hoarseness but this second round started much earlier and I don’t like how I’m feeling this time around. Are you still on the tobramycin every other month?

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@dc1950

Thanks Sue. My first 28 days I had a bit of hoarseness but this second round started much earlier and I don’t like how I’m feeling this time around. Are you still on the tobramycin every other month?

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No, I went from Tobramycin to nearly 2 years of the Big 3. Airway clearance has kept me off the meds for over 2 years now.

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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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That’s great! What is the big 3? I see it on the posts

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@fdixon63

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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Hi fdixon63, is PICC line with Ciftazidime for 2 weeks tolerable? I have Burkholderia cepecia which is showing 1+ and my doctor said if I want to eradicate, we have to use IV. Before it was alway showing 2+. It was 3+ last October and got treated high dose bactrim which made me very sick. Since then, I'm afraid of antibiotics. Some said higher generation antibiotic are well tolerated. What was your PICC line experience? I looked up and it looks scary to me.

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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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Sue, I have bronchiectasis and burkholderia cepecia bug is there since April, last year. Do you think my husband is going to get bronchiectasis too? I learned that both your daughter and husband have bronchiectasis.

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@sweethighland

Sue, I have bronchiectasis and burkholderia cepecia bug is there since April, last year. Do you think my husband is going to get bronchiectasis too? I learned that both your daughter and husband have bronchiectasis.

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No, I can assure you that bronchiectasis is not contagious. In my case, it is probably a genetic predisposition compounded by lifelong asthma and repeated bouts of pneumonia as well as repeated exposure to industrial paper dust and asbestos. My daughter also has the same set of issues and so did my Mom, who also was exposed to paper dust for 40 years. My husband's case is quite different, and is a side effect of the specific type of rheumatoid arthritis he has. It looks very different on his CT than mine.
Incidentally, my Mom had bronchiectasis for years, and died in her mid-80's of a completely unrelated cause.
The types of lung infections we often get are likewise not contagious. With our compromised lungs, we are more likely to catch respiratory bugs from others, so I am especially careful.
Sue

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fdixon63
The description of your experience with pseudomonas aeruginosa could have been written by me, it is so similar. I currently am pseudomonas +4.
I have had levofloxacin many times in the last 9 years. It’s not so effective anymore. Also had nebulized Tobi - usually 14 days on 14 days off - cycle repeated January thru May, this year.
My pulmonologist says I probably always have pseudomonas going on. But I don’t have to restart Tobi unless symptoms worsen. It’s in my sinuses too, and ENT is going to treat that with an antibiotic nasal rinse. I always have a cough with mucus production going on. Pulmonary vest, nebulized 7% saline, nasal rinse with saline and budesonide, 2x daily. Any antibiotics are on top of that.

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@annfl

fdixon63
The description of your experience with pseudomonas aeruginosa could have been written by me, it is so similar. I currently am pseudomonas +4.
I have had levofloxacin many times in the last 9 years. It’s not so effective anymore. Also had nebulized Tobi - usually 14 days on 14 days off - cycle repeated January thru May, this year.
My pulmonologist says I probably always have pseudomonas going on. But I don’t have to restart Tobi unless symptoms worsen. It’s in my sinuses too, and ENT is going to treat that with an antibiotic nasal rinse. I always have a cough with mucus production going on. Pulmonary vest, nebulized 7% saline, nasal rinse with saline and budesonide, 2x daily. Any antibiotics are on top of that.

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The post I last did on this particular topic was two years ago. I've done other posting with other's posting. So I'll respond with an update of where I am now. I changed pulm docs a year ago and at that time my last doc had me on a 28 day Tobi and Levofloxin (2 weeks). My pseudo--most likely--was surpressed and I did well asymptomatically for a year. A couple of months ago my sputum began to be darker. I was doing twice a day--vest and 7% SC. The newer doc said to go to 3X a day and ordered 3.5 hypersal. After a period of 2-3 weeks it was decided to go to Tobi for two weeks. He never ordered any oral antibiotic. I'm on day 10 of Tobi. Feel good about how I'm getting up more medium yellow colored sputum. My question is if I'm still coughing up that kind of sputum at the end of two weeks, what can I expect him to do? Since you had five months of this 2 on and 2 off, what did you experience? Were you still coughing up colored sputum? It seems to me if after two weeks I'm still coughing up this darker sputum I should continue the Tobi till it is clear or very light yellow. Would appreciate your comments on that. Also I never heard of pseudo in the sinuses. Do you have what you blow out tested?
Thanks much.

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@sueinmn

No, I can assure you that bronchiectasis is not contagious. In my case, it is probably a genetic predisposition compounded by lifelong asthma and repeated bouts of pneumonia as well as repeated exposure to industrial paper dust and asbestos. My daughter also has the same set of issues and so did my Mom, who also was exposed to paper dust for 40 years. My husband's case is quite different, and is a side effect of the specific type of rheumatoid arthritis he has. It looks very different on his CT than mine.
Incidentally, my Mom had bronchiectasis for years, and died in her mid-80's of a completely unrelated cause.
The types of lung infections we often get are likewise not contagious. With our compromised lungs, we are more likely to catch respiratory bugs from others, so I am especially careful.
Sue

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Thank you Sue. Your response was reassuring, Saw ID doctor yesterday, my culture is still growing 2+ B cepecia and new bug 1+ Stenotrophomonas maltophilia. Very upset. Both are resistant to many antibiotics. They are not treating me though they have seen the results.

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