Seven years with Pseudomonas-Will this treatment work?

@irenea8 Perhaps you can address this question?

I do not know if this is helpful to your situation or not. I have never tried IV Toby and did not know that even was an option. I was unable to tolerate the inhaled Toby. I hope they plan to monitor your kidneys since Toby is very hard on the kidneys. I very recently finished 14 days of Meropenem as an outpatient at our local hospital. This is the second time of trying it and the same thing happened both times. I do quite well while on it and for about one week after. It works amazingly well and clears up most of my sputum and symptoms. Then the Pseudo builds back up to the usual after just one week. I only get a couple of weeks vacation from Pseudo and the difference during those couple of weeks is profound. The hope is that IV treatment will knock it back for some months but that has not been my experience. But everyone is different and my case may be much more difficult than most. Why are they trying Toby IV instead of one of the other options?

Thanks for the reply Irene. The nurse called me Friday with this proposed treatment and I asked "which antibiotics?" and she said perhaps Toby and another. They would most likely use two. I'm supposed to call them tomorrow. I did a more aggressive AWC yesterday and this AM. I was wondering if I've become too lax. The months of Aug and Sept brought on (suddenly) heart and kidney problems. In ICU for six days and still have home health (PT & nurse). I'm 80 years old now and it's getting hard to fight these battles. So thankful for this forum. I got on board 7 years ago. Faye

@fdixon63
Faye please google IV Tobramycin for Pseudomonas. You will see it is a black box drug and highly toxic. It holds great risk for kidneys etc. at your age especially if you have existing kidney issues now. Perhaps the nurse was not informed about your situation? There are a number of safer IV options for Pseudomonas. The Meropenem is usually quite effective for more severe infections and most people do not experience much or any side effects. Or there are quite a few other options some of which should be good for severe infections? I hope you are under the care of a Dr who specializes in MAC and Pseudo. I hope they can find an option that is safe for you and will be effective and last for some time. Please let me/us know what you end up doing. I feel concerned for you and boy do I get it!

It will give you permanent tinnitus and kidney disease! I wish I had known! Ask for carbapenem

@beejenigma I was on inhaled tobi for 10 years until my infection became resistant to it. No kidney disease, and no tinnitus except when I am in a loud room with a loud band (which I am happy to avoid, tinnitus or no) or have my AirPods on for half a day. Yeah, tinnitus is annoying (and if you go behind the AI stuff, you will find university hospital control-group studies from seven or eight years ago that showed people got tinnitus whether or not they took tobi— it did not significantly increase the risk), but tobi worked while it worked, and my life was far worse before I took it.

@spectrumcyclist IV TOBI not inhaled. I am on inhaled tobi also. NEVER allow a dr to give you IV tobi! Ever!

@spectrumcyclist
IV is what we are talking about. Not inhaled although in my case the inhaled Toby affected my urine output and I know someone else on this forum who got kidney damage from the inhaled. But again we are talking about the IV which is much more toxic.

@beejenigma - Thanks so much for your comments. I've inhaled toby off and on for 7 years. I've just been diagnosed with CKD, Stage 2. Now I wonder if there is a connection. Faye

@fdixon63 Faye,
You could ask. I was told not to worry about inhaling it. I am now stage 3a because of one 14 day IV course! It is not reversible.