Should 4+ Pseudomonas be treated?

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

Jump to this post

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

Jump to this post

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?

Jump to this post

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

Jump to this post

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.

Jump to this post

@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

Jump to this post

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.

Jump to this post

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.

Jump to this post

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

Jump to this post