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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Did they not retest you after the Meropenem? Wondering why your pulmo only wants you to use Toby now for 3 months straight? He probably wants you to follow up with the Toby to be sure. I have read that the Meropenem is for the Pseudomonas in the lower lungs but the Toby gets the upper respiratory better. At any rate Pseudomonas is very hard to eradicate so perhaps you still have some and he feels that will kill the rest? Usually Toby is used to just manage Pseudomonas. To knock it back. So they prescribe it 2 weeks on and 2 off or 28 on and 28 off as an ongoing prophylactic treatment. I have chronic Pseudomonas so my pulmo wanted me to try it. I only lasted a few days on it. I lost my voice and appetite, felt bad but worse thing for me was decreased urine output (which is not supposed to happen with the inhaled version but it did). But some people do ok on it. I have been very interested in trying Meropenem. I have read good results from several people on the forum. Did you have any side effects from it?

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@irenea8

Did they not retest you after the Meropenem? Wondering why your pulmo only wants you to use Toby now for 3 months straight? He probably wants you to follow up with the Toby to be sure. I have read that the Meropenem is for the Pseudomonas in the lower lungs but the Toby gets the upper respiratory better. At any rate Pseudomonas is very hard to eradicate so perhaps you still have some and he feels that will kill the rest? Usually Toby is used to just manage Pseudomonas. To knock it back. So they prescribe it 2 weeks on and 2 off or 28 on and 28 off as an ongoing prophylactic treatment. I have chronic Pseudomonas so my pulmo wanted me to try it. I only lasted a few days on it. I lost my voice and appetite, felt bad but worse thing for me was decreased urine output (which is not supposed to happen with the inhaled version but it did). But some people do ok on it. I have been very interested in trying Meropenem. I have read good results from several people on the forum. Did you have any side effects from it?

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No side effects from the meropenem. Just be sure to take a probiotic everyday while on it or eat yogurt. I chose yogurt. I feel better after going the Meropenem route. Thank you for responding!

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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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@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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You have given me suggestions to ask the doctor about. Thank you so much!.

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@fraytv

No side effects from the meropenem. Just be sure to take a probiotic everyday while on it or eat yogurt. I chose yogurt. I feel better after going the Meropenem route. Thank you for responding!

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I have really bad intestinal issues ongoing. So that would be a big concern and possible barrier to being on it. I take probiotics but they do nothing for me. Any particular brand of yogurt? Thanks for the input and glad you did well on it. People usually say they do. One lady said the improvement from it lasted 2 years. That is a long time if you do have pseudomonas.

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@irenea8

I have really bad intestinal issues ongoing. So that would be a big concern and possible barrier to being on it. I take probiotics but they do nothing for me. Any particular brand of yogurt? Thanks for the input and glad you did well on it. People usually say they do. One lady said the improvement from it lasted 2 years. That is a long time if you do have pseudomonas.

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I ate Chobani Greek yogurt. Thanks for the reply! Take care!

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I said in another thread I had zero side effects from merem...I did not take probiotics.

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I had Pseudomonas show up in a culture after a Bronchoscopy. My pulmonologist gave me Cipro for 10 days. No follow up culture. I changed pulmonologist and he did more cultures and Mac grew. No mention of pseudomonas. Is it possible I got rid of pseudomonas with just 10 days of Cipro? I also have bronchiestasis.

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@leilam

I had Pseudomonas show up in a culture after a Bronchoscopy. My pulmonologist gave me Cipro for 10 days. No follow up culture. I changed pulmonologist and he did more cultures and Mac grew. No mention of pseudomonas. Is it possible I got rid of pseudomonas with just 10 days of Cipro? I also have bronchiestasis.

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Personally I think the Cipro can get rid of pseudomonas. Unfortunately I've dealt with it for four years off and on. I finally ask my pulm doc if it had colonized and he said yes. I've done inhaled tobramycin off and on for the same period because of the recurrence of pseudo. In early March I was on Toby and really struggling so I contacted the pulm doc group asking for help. My regular doc was out and the person filling in for him had me stop the Toby and put me on Cipro for 10 days. It was like a miracle. Each day I was a little better. Now I have energy to exercise, do my housework, run errands and best of all, fill like taking a 1000 mile trip by car. We leave Thursday. I am not going to sit back and think I'm cured because the pseudo may have just suppressed it and I'll have to deal with it again. I'll continue to do airway clearance twice a day so as to enjoy this feeling of freedom as long as it will last. I do believe God has his hand in all that happens and has reasons that we will never understand so I give him the glory. I surely pray you have kicked ole Pseudo to the curb right off the bat. Are you doing airway clearance? My first pulmo did not offer that at all for me. I did change docs and found someone who knew about our diseases/infections. Bless you.

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@fdixon63 thank you for your reply. After reading your response I am even more thankful that it looks like it was caught early enough that it had not colonized.

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