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Seven years with Pseudomonas-Will this treatment work?
First diagnosed with MAC and Pseudomonas seven years ago. It took several months of being with the wrong Pulm doc before getting to the right one. We did 14 days of IV ceftazidime and 28 days of inhaled Tobramycin. That got rid of a lot of junk but pseudo comes back no matter what. Has anyone ever done IV Toby and with good results? They want me to go in the hospital for a few days to start the PICC line treatment, then go home for the remainder of the 14 days of treatment. Look forward to hear other's experiences. Thanks.
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@fdixon63
No doubt there is a connection. They tell you the inhaled will not affect your kidneys but that was not my experience nor that of another person I know of. But if it helped you breath for 7 years and kept the pseudo at bay then perhaps it was worth doing. Maybe now that you are off Toby your kidneys can improve?
@beejenigma - This is some scary stuff. Thanks for your input. Faye
@irenea8 They are making me inhale it every other month and it does no good. I will ask them about it. I do like that they are giving me inhaled cayston on the alternating months though! It is a MIRACLE drug! Have you tried to get it? Brian from the pulmonary floor will order it for you! Ask Hornick? How are you doing?
Did any doctor mention that it may be colonized in your lungs? Has any provider tested you for the ERM41 gene?
@beejenigma
Hello! How do you manage to get the Cayston covered by insurance? It is still only approved for CF patients as far as I can tell. Do you get it covered by Part D? Which plan since you are in Iowa like me? Do you get any side effects from it at all?
@irenea8 Call Hornick. Brian did it!
@beejenigma
I FIRST need to get Part D drug coverage before anyone can attempt to get it. So my question for you is what plan are you on that approved the coverage? Since you are in Iowa like me it would help to know. Do you have a drug plan with your Medicare?
@irenea8 I think they put me on Aetna.
I have no symptoms of the Psuedomonas and the MAC that I have. Just finished 28 days of Tobramycin.
When do they typically do sputum tests.
Grateful
Ann P