My little D can't go off tobi for more than a week without getting the gunky green goo. We're waiting to try Cayston when it becomes available again but are looking for a solution in the short term. I left a message with the CF nurse today to see if we could start continually giving her bactrim. Does anybody else take bactrim continuously or in their off month? Thanks!
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What to do between rounds of tobi?
- Thread starter Anomie
- Start date
My little D can't go off tobi for more than a week without getting the gunky green goo. We're waiting to try Cayston when it becomes available again but are looking for a solution in the short term. I left a message with the CF nurse today to see if we could start continually giving her bactrim. Does anybody else take bactrim continuously or in their off month? Thanks!
Incomudrox
New member
Bactrim is for staph aureus infections... You can maybe see about Cipro as it comes in liquid suspension... Also depending on how badly she is or is not colonized the cayston may kick the PA to the curb and not have to worry about it. Another option would be inhaled fortaz there have been studies published and it's pretty safe with relatively low toxicity. Do not give your daughter colistin unless you want her to have liver failure by the time she is 7....
Incomudrox
New member
Bactrim is for staph aureus infections... You can maybe see about Cipro as it comes in liquid suspension... Also depending on how badly she is or is not colonized the cayston may kick the PA to the curb and not have to worry about it. Another option would be inhaled fortaz there have been studies published and it's pretty safe with relatively low toxicity. Do not give your daughter colistin unless you want her to have liver failure by the time she is 7....
rubyroselee
New member
I am the same way - I cannot go without anything or else I get junky right away. Because I cannot tolerate Colistin, my doctor let me do Tobi in a cycle of 3 weeks on/1 week off (which is obviously not a traditional treatment). That way by the time the week off was over, I was definitely ready to start again. Now that Cayston is out, I rotate with that. I hope this Cayston shortage is over soon though because there are so many people who need it and can't get it <img src="i/expressions/face-icon-small-sad.gif" border="0"> The other option for a maintenance antibiotic is maybe to try Zithromax.
rubyroselee
New member
I am the same way - I cannot go without anything or else I get junky right away. Because I cannot tolerate Colistin, my doctor let me do Tobi in a cycle of 3 weeks on/1 week off (which is obviously not a traditional treatment). That way by the time the week off was over, I was definitely ready to start again. Now that Cayston is out, I rotate with that. I hope this Cayston shortage is over soon though because there are so many people who need it and can't get it <img src="i/expressions/face-icon-small-sad.gif" border="0"> The other option for a maintenance antibiotic is maybe to try Zithromax.
saveferris2009
New member
I drink a green smoothie daily (see my blog) and try to minimize sugar and refined carb intake. Thanks to Mandy's great input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
saveferris2009
New member
I drink a green smoothie daily (see my blog) and try to minimize sugar and refined carb intake. Thanks to Mandy's great input! <img src="i/expressions/face-icon-small-smile.gif" border="0">
Heard back from the CF nurse today. They don't want to give her anything else because of resistance. We have an appointment with the director of the clinic next week and we're hoping to figure out something then. The director seems to have the authority to be a little bit more agressive with her cf. I don't think I can get my 4 year old to drink a green smoothie everyday either, unless it tastes like kool-aid or something that she would actually enjoy.
Heard back from the CF nurse today. They don't want to give her anything else because of resistance. We have an appointment with the director of the clinic next week and we're hoping to figure out something then. The director seems to have the authority to be a little bit more agressive with her cf. I don't think I can get my 4 year old to drink a green smoothie everyday either, unless it tastes like kool-aid or something that she would actually enjoy.
musclemania70
New member
collistin works great
musclemania70
New member
collistin works great
Incomudrox
New member
I wouldn't push it, resistance is nothing to joke with. That's what does most CFers in at the end. I have only been on two antibioics IV my whole life Zosyn and Tobra.... I've taken bactrim and augmentin orally. The less meds you do the less resistance you end up with. Switching things around too much will breed super bacteria. Amy has a good suggestion on the smoothies. Start with more fruit to make its sweeter.... then cut it out slowly... get her hooked on them young. There is a lot of research suggestion Phytochemical (green smoothies are loaded with) can potentiate CFTR to some extent so you are doing a lot of stuff with them, not to mention it's healthy. Keeping BSG under control is also huge as constant BSG over 140 will feed PA and make it stronger and more rampid.
Incomudrox
New member
I wouldn't push it, resistance is nothing to joke with. That's what does most CFers in at the end. I have only been on two antibioics IV my whole life Zosyn and Tobra.... I've taken bactrim and augmentin orally. The less meds you do the less resistance you end up with. Switching things around too much will breed super bacteria. Amy has a good suggestion on the smoothies. Start with more fruit to make its sweeter.... then cut it out slowly... get her hooked on them young. There is a lot of research suggestion Phytochemical (green smoothies are loaded with) can potentiate CFTR to some extent so you are doing a lot of stuff with them, not to mention it's healthy. Keeping BSG under control is also huge as constant BSG over 140 will feed PA and make it stronger and more rampid.