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Finished 1st month of Cayston. How do I know if it's working??
I did inhaled tobramycin off and on for 6 years but unable to tolerate any longer and stopped. Following 2 weeks of IV antibiotic I began Cayston. I tolerated it very well so was pleased that way. Am on a 28 day break and will then do 28 days on again. How will I know if it is working for my colonized Pseudomonas? I'm not currently producing any colored sputum--only clear when nebbing. I asked my doctor this question last week and essentially he said it's based on symptoms and went into all the different ways they can prescribe Cayston treatment. Would welcome any insight from those in similar situation.
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I am just about to begin the 8 day 28 day off cycle of Cayston. I have been on Toby and colistimethate during the last 6 months. Both have produced sputum cultures negative for psudomonus. My pulmonologist at NYU does a CT scan about every 6 months, so far so good.
I feel great , we will see how a tolerate the new med.
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1 Reaction@lenorj If Toby and colistimethate resulted in negative sputum results, why did they then put you on Cayston?? It seems like six months negative would indicate the pseudomonas was cleared. Thank you for sharing your experience.
I think my Dr feels that we have one shot to clear the bug because once it colonizes it’s near impossible to get rid of it the plan was always that I would be on meds for 6 months, it’s just a mater of how I tolerate each. Fingers crossed that we kill it once and for all.
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1 Reaction@lenorj Thanks for the response. Would like to know the result of your next sputum check. So far I don't have any colored sputum so it's a guessing game. I will just watch my symptoms, etc.
@fdixon63 Because pseudomonas is NEVER cleared. You have it for life!
Thank your lucky stars you are able to get cayston. I am on it also, thank heaven, or I would probably be dead. I have gone positive inhaling tobi so they alternate months with cayston and voila! Two years later and I have not had a positive sputum! Fingers crossed! It's working because you do not have a positive sputum! Miracle drug that will keep you alive years longer. Keep using it.