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Pseudomonas: What antibiotic treatment worked for you?

Posted by Stella Tucson @fraytv, Apr 21, 2023

Has anyone been on Tobramycin for 3 months for treatment of pseudomonas? I would appreciate any comments good or bad & did it kill the pseudomonas. I was in the hospital twice for pneumonia. & pseudomonas. I was on Toby for 28 days with the understanding it would be 28 days on, 28 days off, then reevaluate. This was with my pulmonologist that has now left the practice. I started having hearing loss & my voice got very raspy while using Toby, & it tasted bad. I started seeing another pulmonologist at another practice that sent me to an Infectious Disease doctor on my first visit with him, the ID told me to stop the Toby & he put me on Meropenem antibiotic through picc line for 2 weeks. I feel the Meropenem did more good for me than the Toby. When I saw my new pulmonologist for the 2nd time he wants me to use Toby for 3 months continuously, no other options. I told him I would think about it because of the side effects of Toby, he was not happy with me. I have made an appt with ID dr to see if there are any other options. Would appreciate any feedback.

There was a person on this forum that asked me to post my experience with the Meropenem. I got the picc line as an outpatient at the hospital. A nurse from a compounding pharmacy came out the same day to administer my first dose & to make sure I didn’t have an allergic reaction & to teach my husband & I how to administer the med. It was for 14 days, given 3 times a day, every 8 hours. A nurse came out 3 times during treatment to change the dressing. I am allergic to numerous antibiotics so was glad it went well. I feel this antibiotic did more good for me than the other 3 antibiotics. Praying this antibiotic did the job, I have been sick for over 5 months. Thank you!

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Jennifer | @megan123 | May 1, 2023
In reply to @pjas972j "Stella, I was on IV Meropenem through a PICC line a number of years ago. It..." + (show)
@pjas972j

Stella,
I was on IV Meropenem through a PICC line a number of years ago. It did a good job of knocking down my pseudomonas but apparently didn't totally get rid of it because I've had five PICC lines total. Cefapime, Zosyn, etc. At some point the pseudomonas became colonized into the mucoid form. When I went to NJH last year, they started me on inhaled Tobramycin 2 weeks on/off. My voice has been an issue but the ENT put me on Nystatin for a week during the Tobi and I also nebulize 0.9% saline after the Tobi as a vocal rinse. My voice is still raspy after two weeks but recovers pretty quickly.
I think going to an ID doctor is wise. The ones I have seen over the last decade know much more about antibiotic administration and their side effects than the pulmonolgists.
I hope you feel better soon!
Jennifer

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Has…I too am colonized with pseudo..I nebulize Colistin every other month for the last 5 years, to prevent it from becoming mucoid..been a life savour drug😎

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1 reply
irenea8 | @irenea8 | May 2, 2023
In reply to @megan123 "Has…I too am colonized with pseudo..I nebulize Colistin every other month for the last 5 years,..." + (show)
@megan123

Has…I too am colonized with pseudo..I nebulize Colistin every other month for the last 5 years, to prevent it from becoming mucoid..been a life savour drug😎

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My pulmo said colonized and mucoid is the same thing. Is there a difference? Any reactions to the colistin?

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Jennifer | @megan123 | May 2, 2023

Being colonized and mucoid pseufomonas is not the same thing at all…when u google it, it will clearly explain the difference…no side effects

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1 reply
irenea8 | @irenea8 | May 3, 2023
In reply to @megan123 "Being colonized and mucoid pseufomonas is not the same thing at all…when u google it, it..." + (show)
@megan123

Being colonized and mucoid pseufomonas is not the same thing at all…when u google it, it will clearly explain the difference…no side effects

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I will have to ask my Pulmo again. He is a specialist with Bronchiectasis etc so seems like he should know!

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Stella Tucson | @fraytv | May 16, 2023

Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if so does it work & did you have any bad side effects? My pulmonologist wanted me to be on Tobramycin 3 months straight after I had already been using it for 28 days. I told him due to the side effects I preferred not to. After talking to the Infectious Disease dr he wants me to try the azithromycin antibiotic 3 times a week as maintenance for the pneumonia & pseudomonas I had late 2022 & again this year. I have bronchiectasis. Would appreciate any comments. Thank you!

REPLY
4 replies
liz440 | @liz440 | May 16, 2023
In reply to @fraytv "Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if..." + (show)
@fraytv

Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if so does it work & did you have any bad side effects? My pulmonologist wanted me to be on Tobramycin 3 months straight after I had already been using it for 28 days. I told him due to the side effects I preferred not to. After talking to the Infectious Disease dr he wants me to try the azithromycin antibiotic 3 times a week as maintenance for the pneumonia & pseudomonas I had late 2022 & again this year. I have bronchiectasis. Would appreciate any comments. Thank you!

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I am on that treatment. No side effects at all (hearing is fine no tintinitus). I was unable to take Tobi and was on Merem IV and now I'm on Sodium Chloride 3% plus the Azithro (250 mg) 3 times a week. (also Breo and Albuteral PRN) I have only been on this treatment since December but so far no downside. People on here say though that it can cause resistance (MAC etc.) but I guess that is a risk one has to decide to take. I haven't had a relapse but what means I don't know!

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1 reply
dlynn1210 | @dlynn1210 | May 18, 2023
In reply to @fraytv "Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if..." + (show)
@fraytv

Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if so does it work & did you have any bad side effects? My pulmonologist wanted me to be on Tobramycin 3 months straight after I had already been using it for 28 days. I told him due to the side effects I preferred not to. After talking to the Infectious Disease dr he wants me to try the azithromycin antibiotic 3 times a week as maintenance for the pneumonia & pseudomonas I had late 2022 & again this year. I have bronchiectasis. Would appreciate any comments. Thank you!

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I have been in the standard 3 meds for three years to treat MAC. I was never told I should get my hearing tested for a baseline but have an appt now to see a doctor. I can tell that I have sustained a tremendous hearing loss as I continually have to ask my husband ‘what’ even though he is only a few feet from me. One serious side effect that is attributed to all three meds is severe dizziness - I have even passed out. This negatively affects my life more than any other side effects. I can’t drive for fear of causing a wreck. I would suggest googling Azithromycin and looking at side effects.

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1 reply
lweirdo1 | @lweirdo1 | May 18, 2023
In reply to @fraytv "Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if..." + (show)
@fraytv

Has anyone been on azithromycin antibiotics 3 times a week for maintenance of pseudomonas & if so does it work & did you have any bad side effects? My pulmonologist wanted me to be on Tobramycin 3 months straight after I had already been using it for 28 days. I told him due to the side effects I preferred not to. After talking to the Infectious Disease dr he wants me to try the azithromycin antibiotic 3 times a week as maintenance for the pneumonia & pseudomonas I had late 2022 & again this year. I have bronchiectasis. Would appreciate any comments. Thank you!

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I am also on Azithromycin. No better, no worse & up to now no real side effects. Hoping it will actually "kick-in" sometime soon!

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1 reply
Stella Tucson | @fraytv | May 18, 2023
In reply to @dlynn1210 "I have been in the standard 3 meds for three years to treat MAC. I was..." + (show)
@dlynn1210

I have been in the standard 3 meds for three years to treat MAC. I was never told I should get my hearing tested for a baseline but have an appt now to see a doctor. I can tell that I have sustained a tremendous hearing loss as I continually have to ask my husband ‘what’ even though he is only a few feet from me. One serious side effect that is attributed to all three meds is severe dizziness - I have even passed out. This negatively affects my life more than any other side effects. I can’t drive for fear of causing a wreck. I would suggest googling Azithromycin and looking at side effects.

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Thank you for responding. Sorry to hear of your side effects from the meds. I suffered from hearing loss after being on Cipro & Levaquin, I have taken both many times before & did not suffer hearing loss, it got worse while on the Tobramycin. I had a nurse tell me those meds will cause hearing loss. I asked the dr if those meds caused the hearing loss after I read they could & all he said was “maybe”. Wishing you the best!

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Stella Tucson | @fraytv | May 18, 2023
In reply to @lweirdo1 "I am also on Azithromycin. No better, no worse & up to now no real side..." + (show)
@lweirdo1

I am also on Azithromycin. No better, no worse & up to now no real side effects. Hoping it will actually "kick-in" sometime soon!

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Thank you for responding. I was told by the Infectious Disease dr it is not a cure but rather “maintenance” to keep the infection from returning.

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