Pseudomonas treatment ?

Posted by reneemc @reneemc, 6 days ago

Received respiratory culture result today. In addition to the MAC I now have Pseudomonas. What is the treatment for this? How long and is it effective?

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@irenea8

That is major news that Cayston is now covered for NCFBE. Thank you for letting me know. When I tried it, it raised my heart rate quite alot. But I should try it again and see. I cannot use Toby as it caused reduced urine output for me. Even inhaled it can impact the kidneys for some people. If you can use it, you are fortunate!

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Tobi IV killed my kidneys a year and a half ago permanently to stage 3. They keep telling me that it is not something to be concerned about when inhaling. I will ask again.

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@beejenigma

Tobi IV killed my kidneys a year and a half ago permanently to stage 3. They keep telling me that it is not something to be concerned about when inhaling. I will ask again.

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They assured me of the same thing with the inhaled. But after just 3 doses my urine output reduced so I did not want to take any chances and I stopped. I am very prone to reduced urine output while on antibiotics but Toby is the worse for kidneys. Also I have a friend from this forum who did Toby inhalation for a period of time. I think it was some months. But as a result she now has permanent kidney damage. So it may be less rare than they tell you when it comes to the inhalation route. Do you remember which IV antibiotic you were on when you did IV? Was it just the Toby?

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@irenea8

They assured me of the same thing with the inhaled. But after just 3 doses my urine output reduced so I did not want to take any chances and I stopped. I am very prone to reduced urine output while on antibiotics but Toby is the worse for kidneys. Also I have a friend from this forum who did Toby inhalation for a period of time. I think it was some months. But as a result she now has permanent kidney damage. So it may be less rare than they tell you when it comes to the inhalation route. Do you remember which IV antibiotic you were on when you did IV? Was it just the Toby?

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Tobi the first time, a cephalosporin the second time and carbapenem in December.

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@reneemc

Dr McShanes nurse said we’re not going to treat it. I’m confused.

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I had a positive pseudomonas putida result last spring. My Penn pulmonologist said I could use inhaled Tobramycin, but because it was a low count we decided to hold off on treatment unless I grew it again or had symptoms. Perhaps they think yours is just colonized and not causing illness or problems, too.

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@beejenigma

Tobi the first time, a cephalosporin the second time and carbapenem in December.

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Meropenem?? In December?

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@irenea8

Meropenem?? In December?

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Yep. They know they cannot give me tobi anymore because they trashed my kidneys. And that cephalosporin in November did not do much to my kidneys either.

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@beejenigma

Yep. They know they cannot give me tobi anymore because they trashed my kidneys. And that cephalosporin in November did not do much to my kidneys either.

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sent you private message. So sorry about the Tobi. It is so bad for kidneys.

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@irenea8

sent you private message. So sorry about the Tobi. It is so bad for kidneys.

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How do I know where to look for private messages?

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Levoquin is the treatment I have been on for pseudomonas. I am being kept on it now two times weekly as a prophylactic. Good luck. Irene5

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I have seen some phage center in Belgium, Georgia and Finland treating pseudomonas.
Mayo Clinc, Univ of Sandiago, Pittursburg University are all pioneering centers for phage therapy in USA. I hope they made great progress and FDA can approve it. Eventually patients with lung damage will develop more bacteria infections.
https://newsnetwork.mayoclinic.org/discussion/mayo-patient-with-life-threatening-multidrug-resistant-infection-treated-with-experimental-phage-therapy-combined-with-surgery/

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