I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was on IV's for a minor infection. I discussed it at my last CF visit. He would not have brought it up had I not. He said he thinks it is reasonable to consider and would leave the choice up to me. So at the end of January, we may do a tune up if I desire. I would like all your thoughts on this and also suggestions for good "drugs". I have only been on Tobra with Merepenim and also Ceptazadyme. I know I butchered those spellings. I regularly culture 2 or 3 strains of pseudomonas aruginosa. Thanks for any advice.
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Tune ups
- Thread starter Skye
- Start date
I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was on IV's for a minor infection. I discussed it at my last CF visit. He would not have brought it up had I not. He said he thinks it is reasonable to consider and would leave the choice up to me. So at the end of January, we may do a tune up if I desire. I would like all your thoughts on this and also suggestions for good "drugs". I have only been on Tobra with Merepenim and also Ceptazadyme. I know I butchered those spellings. I regularly culture 2 or 3 strains of pseudomonas aruginosa. Thanks for any advice.
I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was on IV's for a minor infection. I discussed it at my last CF visit. He would not have brought it up had I not. He said he thinks it is reasonable to consider and would leave the choice up to me. So at the end of January, we may do a tune up if I desire. I would like all your thoughts on this and also suggestions for good "drugs". I have only been on Tobra with Merepenim and also Ceptazadyme. I know I butchered those spellings. I regularly culture 2 or 3 strains of pseudomonas aruginosa. Thanks for any advice.
I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was on IV's for a minor infection. I discussed it at my last CF visit. He would not have brought it up had I not. He said he thinks it is reasonable to consider and would leave the choice up to me. So at the end of January, we may do a tune up if I desire. I would like all your thoughts on this and also suggestions for good "drugs". I have only been on Tobra with Merepenim and also Ceptazadyme. I know I butchered those spellings. I regularly culture 2 or 3 strains of pseudomonas aruginosa. Thanks for any advice.
I am curious how you all feel about tune-ups. I am kind of new to the IV antibiotic world. I have only had them 2x. I know some centers recommend tune-ups on a regular basis regardless of numbers. I am at a relatively low FEV1 but stable and feeling good. It has been about 6 months since I was on IV's for a minor infection. I discussed it at my last CF visit. He would not have brought it up had I not. He said he thinks it is reasonable to consider and would leave the choice up to me. So at the end of January, we may do a tune up if I desire. I would like all your thoughts on this and also suggestions for good "drugs". I have only been on Tobra with Merepenim and also Ceptazadyme. I know I butchered those spellings. I regularly culture 2 or 3 strains of pseudomonas aruginosa. Thanks for any advice.
jamie6girl
New member
I'm curious about this as well. I've only been on IV's twice, but I know the time is coming where I need to start doing them on a regular basis. How does everyone else make time for it? <br><br>Skye, one thing my doc told me was in some other countries, they go on IV every other month instead of Tobi.
jamie6girl
New member
I'm curious about this as well. I've only been on IV's twice, but I know the time is coming where I need to start doing them on a regular basis. How does everyone else make time for it? <br><br>Skye, one thing my doc told me was in some other countries, they go on IV every other month instead of Tobi.
jamie6girl
New member
I'm curious about this as well. I've only been on IV's twice, but I know the time is coming where I need to start doing them on a regular basis. How does everyone else make time for it? <br><br>Skye, one thing my doc told me was in some other countries, they go on IV every other month instead of Tobi.
jamie6girl
New member
I'm curious about this as well. I've only been on IV's twice, but I know the time is coming where I need to start doing them on a regular basis. How does everyone else make time for it? <br><br>Skye, one thing my doc told me was in some other countries, they go on IV every other month instead of Tobi.
jamie6girl
New member
I'm curious about this as well. I've only been on IV's twice, but I know the time is coming where I need to start doing them on a regular basis. How does everyone else make time for it? <br><br>Skye, one thing my doc told me was in some other countries, they go on IV every other month instead of Tobi.
S
semperfiohana
Guest
i've only had them 3 times and i'm fixing to go on them again. it's been 2 years since my last tune up. i absoutley HATE tune ups...i think it's the having to have a routine every 6 and 12 hours. getting up 30 min before to take the meds out and then having to admister them. don't get me wrong though i love being able to do it at home. although i do have to keep my arm bandaged up cause it grosses my husband out and the older i get it's starting to actually gross me out seeing a tub sticking out of my arm. gives me the willies remembering it. i think though cause i'm pregnant now i may start doing at least one iv a year just to keep me up as high as i can. jaime6girl said some doctors are trying to get people to do tobi every other month, this is very true. my doctors have been trying to get me to do inhaled tobi every other month for a long time, but it gives me really bad headaches. but the werid thing is i can tolerate tobi through the iv. when i have iv's they normally give me tobi and fortaz (the fortaz smells like cat pee if you get it in the push syringe though). i too culture puesdo a. i don't know if i have more than one strand, but i know i culture it and i have for a while. i know back home in my home town where i'm from orginially the new cf clinic they have there the doctor that is in charge of it is orginally from new york and he knows a lot about cf and i think he recommends all of his patients to do ivs like 3 or 4 times a year. so i'm actually kinda glad that i'm not back home there anymore, but i think it just kinda depends on the doctor and how they feel and what they feel is best for the patient. i don't know of any drugs to recommend though, have they tried to get you to inhale through the nebulizer colistin every other month? or gentamicin? the gentamicin is in the same family as tobi. but maybe those are maybe something they can get you to try? good luck!
S
semperfiohana
Guest
i've only had them 3 times and i'm fixing to go on them again. it's been 2 years since my last tune up. i absoutley HATE tune ups...i think it's the having to have a routine every 6 and 12 hours. getting up 30 min before to take the meds out and then having to admister them. don't get me wrong though i love being able to do it at home. although i do have to keep my arm bandaged up cause it grosses my husband out and the older i get it's starting to actually gross me out seeing a tub sticking out of my arm. gives me the willies remembering it. i think though cause i'm pregnant now i may start doing at least one iv a year just to keep me up as high as i can. jaime6girl said some doctors are trying to get people to do tobi every other month, this is very true. my doctors have been trying to get me to do inhaled tobi every other month for a long time, but it gives me really bad headaches. but the werid thing is i can tolerate tobi through the iv. when i have iv's they normally give me tobi and fortaz (the fortaz smells like cat pee if you get it in the push syringe though). i too culture puesdo a. i don't know if i have more than one strand, but i know i culture it and i have for a while. i know back home in my home town where i'm from orginially the new cf clinic they have there the doctor that is in charge of it is orginally from new york and he knows a lot about cf and i think he recommends all of his patients to do ivs like 3 or 4 times a year. so i'm actually kinda glad that i'm not back home there anymore, but i think it just kinda depends on the doctor and how they feel and what they feel is best for the patient. i don't know of any drugs to recommend though, have they tried to get you to inhale through the nebulizer colistin every other month? or gentamicin? the gentamicin is in the same family as tobi. but maybe those are maybe something they can get you to try? good luck!
S
semperfiohana
Guest
i've only had them 3 times and i'm fixing to go on them again. it's been 2 years since my last tune up. i absoutley HATE tune ups...i think it's the having to have a routine every 6 and 12 hours. getting up 30 min before to take the meds out and then having to admister them. don't get me wrong though i love being able to do it at home. although i do have to keep my arm bandaged up cause it grosses my husband out and the older i get it's starting to actually gross me out seeing a tub sticking out of my arm. gives me the willies remembering it. i think though cause i'm pregnant now i may start doing at least one iv a year just to keep me up as high as i can. jaime6girl said some doctors are trying to get people to do tobi every other month, this is very true. my doctors have been trying to get me to do inhaled tobi every other month for a long time, but it gives me really bad headaches. but the werid thing is i can tolerate tobi through the iv. when i have iv's they normally give me tobi and fortaz (the fortaz smells like cat pee if you get it in the push syringe though). i too culture puesdo a. i don't know if i have more than one strand, but i know i culture it and i have for a while. i know back home in my home town where i'm from orginially the new cf clinic they have there the doctor that is in charge of it is orginally from new york and he knows a lot about cf and i think he recommends all of his patients to do ivs like 3 or 4 times a year. so i'm actually kinda glad that i'm not back home there anymore, but i think it just kinda depends on the doctor and how they feel and what they feel is best for the patient. i don't know of any drugs to recommend though, have they tried to get you to inhale through the nebulizer colistin every other month? or gentamicin? the gentamicin is in the same family as tobi. but maybe those are maybe something they can get you to try? good luck!
S
semperfiohana
Guest
i've only had them 3 times and i'm fixing to go on them again. it's been 2 years since my last tune up. i absoutley HATE tune ups...i think it's the having to have a routine every 6 and 12 hours. getting up 30 min before to take the meds out and then having to admister them. don't get me wrong though i love being able to do it at home. although i do have to keep my arm bandaged up cause it grosses my husband out and the older i get it's starting to actually gross me out seeing a tub sticking out of my arm. gives me the willies remembering it. i think though cause i'm pregnant now i may start doing at least one iv a year just to keep me up as high as i can. jaime6girl said some doctors are trying to get people to do tobi every other month, this is very true. my doctors have been trying to get me to do inhaled tobi every other month for a long time, but it gives me really bad headaches. but the werid thing is i can tolerate tobi through the iv. when i have iv's they normally give me tobi and fortaz (the fortaz smells like cat pee if you get it in the push syringe though). i too culture puesdo a. i don't know if i have more than one strand, but i know i culture it and i have for a while. i know back home in my home town where i'm from orginially the new cf clinic they have there the doctor that is in charge of it is orginally from new york and he knows a lot about cf and i think he recommends all of his patients to do ivs like 3 or 4 times a year. so i'm actually kinda glad that i'm not back home there anymore, but i think it just kinda depends on the doctor and how they feel and what they feel is best for the patient. i don't know of any drugs to recommend though, have they tried to get you to inhale through the nebulizer colistin every other month? or gentamicin? the gentamicin is in the same family as tobi. but maybe those are maybe something they can get you to try? good luck!
S
semperfiohana
Guest
i've only had them 3 times and i'm fixing to go on them again. it's been 2 years since my last tune up. i absoutley HATE tune ups...i think it's the having to have a routine every 6 and 12 hours. getting up 30 min before to take the meds out and then having to admister them. don't get me wrong though i love being able to do it at home. although i do have to keep my arm bandaged up cause it grosses my husband out and the older i get it's starting to actually gross me out seeing a tub sticking out of my arm. gives me the willies remembering it. i think though cause i'm pregnant now i may start doing at least one iv a year just to keep me up as high as i can. jaime6girl said some doctors are trying to get people to do tobi every other month, this is very true. my doctors have been trying to get me to do inhaled tobi every other month for a long time, but it gives me really bad headaches. but the werid thing is i can tolerate tobi through the iv. when i have iv's they normally give me tobi and fortaz (the fortaz smells like cat pee if you get it in the push syringe though). i too culture puesdo a. i don't know if i have more than one strand, but i know i culture it and i have for a while. i know back home in my home town where i'm from orginially the new cf clinic they have there the doctor that is in charge of it is orginally from new york and he knows a lot about cf and i think he recommends all of his patients to do ivs like 3 or 4 times a year. so i'm actually kinda glad that i'm not back home there anymore, but i think it just kinda depends on the doctor and how they feel and what they feel is best for the patient. i don't know of any drugs to recommend though, have they tried to get you to inhale through the nebulizer colistin every other month? or gentamicin? the gentamicin is in the same family as tobi. but maybe those are maybe something they can get you to try? good luck!
M
MCGrad2006
Guest
I do my tune ups once or twice a year. I am currently on IV's (Tobra, ceftaz and Vanco, which is for MRSA) and it was exactly a year since I had them last. I went in the day after Christmas last year and this year as well. I think that it works for me, I have been very healthy and prior to this year was in the hosp more frequently. Being able to go a whole year without abx was big for me. I usually base it on my PFT's or how I feel. I knew before I even got PFT's this time that I would be admitted. I have had three or four colds since september and have just not been able to get rid of them on my own. I tried oral and inhaled abx at home the first few times, and then two weeks later, I would be sick again. Thats how I usually base it and I am also a teacher, so I can usually work around my school schedule, going in over breaks and whatnot.
M
MCGrad2006
Guest
I do my tune ups once or twice a year. I am currently on IV's (Tobra, ceftaz and Vanco, which is for MRSA) and it was exactly a year since I had them last. I went in the day after Christmas last year and this year as well. I think that it works for me, I have been very healthy and prior to this year was in the hosp more frequently. Being able to go a whole year without abx was big for me. I usually base it on my PFT's or how I feel. I knew before I even got PFT's this time that I would be admitted. I have had three or four colds since september and have just not been able to get rid of them on my own. I tried oral and inhaled abx at home the first few times, and then two weeks later, I would be sick again. Thats how I usually base it and I am also a teacher, so I can usually work around my school schedule, going in over breaks and whatnot.
M
MCGrad2006
Guest
I do my tune ups once or twice a year. I am currently on IV's (Tobra, ceftaz and Vanco, which is for MRSA) and it was exactly a year since I had them last. I went in the day after Christmas last year and this year as well. I think that it works for me, I have been very healthy and prior to this year was in the hosp more frequently. Being able to go a whole year without abx was big for me. I usually base it on my PFT's or how I feel. I knew before I even got PFT's this time that I would be admitted. I have had three or four colds since september and have just not been able to get rid of them on my own. I tried oral and inhaled abx at home the first few times, and then two weeks later, I would be sick again. Thats how I usually base it and I am also a teacher, so I can usually work around my school schedule, going in over breaks and whatnot.
M
MCGrad2006
Guest
I do my tune ups once or twice a year. I am currently on IV's (Tobra, ceftaz and Vanco, which is for MRSA) and it was exactly a year since I had them last. I went in the day after Christmas last year and this year as well. I think that it works for me, I have been very healthy and prior to this year was in the hosp more frequently. Being able to go a whole year without abx was big for me. I usually base it on my PFT's or how I feel. I knew before I even got PFT's this time that I would be admitted. I have had three or four colds since september and have just not been able to get rid of them on my own. I tried oral and inhaled abx at home the first few times, and then two weeks later, I would be sick again. Thats how I usually base it and I am also a teacher, so I can usually work around my school schedule, going in over breaks and whatnot.
M
MCGrad2006
Guest
I do my tune ups once or twice a year. I am currently on IV's (Tobra, ceftaz and Vanco, which is for MRSA) and it was exactly a year since I had them last. I went in the day after Christmas last year and this year as well. I think that it works for me, I have been very healthy and prior to this year was in the hosp more frequently. Being able to go a whole year without abx was big for me. I usually base it on my PFT's or how I feel. I knew before I even got PFT's this time that I would be admitted. I have had three or four colds since september and have just not been able to get rid of them on my own. I tried oral and inhaled abx at home the first few times, and then two weeks later, I would be sick again. Thats how I usually base it and I am also a teacher, so I can usually work around my school schedule, going in over breaks and whatnot.