I have been on the 28 days on/28 days off Tobi regimen for many years now. It seems to be effective, but lately I've been having problems during the off-Tobi weeks. I experience a very noticeable decline in lung capacity over that time. I lose tons of sleep because I cough incessantly when my body is horizontal. This is a huge handicap since I'm a full-time student and barely have enough time to sleep between classes, homework, exercising, and doing treatments. By the end of the cycle, I can barely climb the stairs in our apartment without getting completely winded, but within 4 or 5 days of resuming the Tobi, I am back to my normal, albeit limited, lung capacity. Does anyone else have this problem? What do you do to remain functional during those off-weeks?
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Problems with the Tobi cycle
- Thread starter soderick
- Start date
I have been on the 28 days on/28 days off Tobi regimen for many years now. It seems to be effective, but lately I've been having problems during the off-Tobi weeks. I experience a very noticeable decline in lung capacity over that time. I lose tons of sleep because I cough incessantly when my body is horizontal. This is a huge handicap since I'm a full-time student and barely have enough time to sleep between classes, homework, exercising, and doing treatments. By the end of the cycle, I can barely climb the stairs in our apartment without getting completely winded, but within 4 or 5 days of resuming the Tobi, I am back to my normal, albeit limited, lung capacity. Does anyone else have this problem? What do you do to remain functional during those off-weeks?
I have been on the 28 days on/28 days off Tobi regimen for many years now. It seems to be effective, but lately I've been having problems during the off-Tobi weeks. I experience a very noticeable decline in lung capacity over that time. I lose tons of sleep because I cough incessantly when my body is horizontal. This is a huge handicap since I'm a full-time student and barely have enough time to sleep between classes, homework, exercising, and doing treatments. By the end of the cycle, I can barely climb the stairs in our apartment without getting completely winded, but within 4 or 5 days of resuming the Tobi, I am back to my normal, albeit limited, lung capacity. Does anyone else have this problem? What do you do to remain functional during those off-weeks?
I have been on the 28 days on/28 days off Tobi regimen for many years now. It seems to be effective, but lately I've been having problems during the off-Tobi weeks. I experience a very noticeable decline in lung capacity over that time. I lose tons of sleep because I cough incessantly when my body is horizontal. This is a huge handicap since I'm a full-time student and barely have enough time to sleep between classes, homework, exercising, and doing treatments. By the end of the cycle, I can barely climb the stairs in our apartment without getting completely winded, but within 4 or 5 days of resuming the Tobi, I am back to my normal, albeit limited, lung capacity. Does anyone else have this problem? What do you do to remain functional during those off-weeks?
I have been on the 28 days on/28 days off Tobi regimen for many years now. It seems to be effective, but lately I've been having problems during the off-Tobi weeks. I experience a very noticeable decline in lung capacity over that time. I lose tons of sleep because I cough incessantly when my body is horizontal. This is a huge handicap since I'm a full-time student and barely have enough time to sleep between classes, homework, exercising, and doing treatments. By the end of the cycle, I can barely climb the stairs in our apartment without getting completely winded, but within 4 or 5 days of resuming the Tobi, I am back to my normal, albeit limited, lung capacity. Does anyone else have this problem? What do you do to remain functional during those off-weeks?
i have similar issues during my off tobi weeks as well, though not as severe it sounds like. my doc wanted me to start another drug during the off tobi months to help keep steady lung funciton. i don't tolerate colistin (makes me worse instead of better) but that could be an option for you or depending on how low your baseline lung fuction is to start with you might can get into the early access aztreonam program. since the FDA didn't approve it if your lung function is above i think 50% you can't get it yet, but hopefully they will approve it soon...so that could be another option. since neither one of those are options for me i'm not doing anything additional during the off weeks so i just up my treatments when i start feeling crappy.
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
i have similar issues during my off tobi weeks as well, though not as severe it sounds like. my doc wanted me to start another drug during the off tobi months to help keep steady lung funciton. i don't tolerate colistin (makes me worse instead of better) but that could be an option for you or depending on how low your baseline lung fuction is to start with you might can get into the early access aztreonam program. since the FDA didn't approve it if your lung function is above i think 50% you can't get it yet, but hopefully they will approve it soon...so that could be another option. since neither one of those are options for me i'm not doing anything additional during the off weeks so i just up my treatments when i start feeling crappy.
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
i have similar issues during my off tobi weeks as well, though not as severe it sounds like. my doc wanted me to start another drug during the off tobi months to help keep steady lung funciton. i don't tolerate colistin (makes me worse instead of better) but that could be an option for you or depending on how low your baseline lung fuction is to start with you might can get into the early access aztreonam program. since the FDA didn't approve it if your lung function is above i think 50% you can't get it yet, but hopefully they will approve it soon...so that could be another option. since neither one of those are options for me i'm not doing anything additional during the off weeks so i just up my treatments when i start feeling crappy.
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
i have similar issues during my off tobi weeks as well, though not as severe it sounds like. my doc wanted me to start another drug during the off tobi months to help keep steady lung funciton. i don't tolerate colistin (makes me worse instead of better) but that could be an option for you or depending on how low your baseline lung fuction is to start with you might can get into the early access aztreonam program. since the FDA didn't approve it if your lung function is above i think 50% you can't get it yet, but hopefully they will approve it soon...so that could be another option. since neither one of those are options for me i'm not doing anything additional during the off weeks so i just up my treatments when i start feeling crappy.
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
i have similar issues during my off tobi weeks as well, though not as severe it sounds like. my doc wanted me to start another drug during the off tobi months to help keep steady lung funciton. i don't tolerate colistin (makes me worse instead of better) but that could be an option for you or depending on how low your baseline lung fuction is to start with you might can get into the early access aztreonam program. since the FDA didn't approve it if your lung function is above i think 50% you can't get it yet, but hopefully they will approve it soon...so that could be another option. since neither one of those are options for me i'm not doing anything additional during the off weeks so i just up my treatments when i start feeling crappy.
<br />
<br />good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />good luck with school! i miss it <img src="i/expressions/face-icon-small-smile.gif" border="0">
rubyroselee
New member
Hi Sadie,
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
rubyroselee
New member
Hi Sadie,
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
rubyroselee
New member
Hi Sadie,
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
rubyroselee
New member
Hi Sadie,
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
rubyroselee
New member
Hi Sadie,
<br />
<br />I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
<br />
<br />I have the EXACT same problem. My off-Tobi months were horrible for me...I would feel so much worse with the coughing, SOB, fatigue, etc. What we first tried was doing Colistin on the off-Tobi months, but Colisitin really didn't do anything for me. So my doctor took a little untraditional approach and put me on Tobi 3 weeks on/1 week off. I have been doing this for many years and it works so much better! I now only have one week of feeling bad rather than 4 weeks, and even so by the time I start feeling bad it's time to start Tobi again anyways. I know this is not traditional and some doctors might not go for it, but I think the benefits are much greater than the harm. The risk is that there will be resistance quicker to Tobi, but I have been doing this for many years and it still works just as effective and I still have sensitivity to it. The other option is to do Tobi once a day with no break (I've heard of this method before too), but I didn't think that would work for me personally. Talk to your doctor to see what options there are for your off-Tobi month, because I totally understand what you're going through.
I am experiencing that right now actually! Its HORRIBLE the way I feel right after stopping my cycle of tobi...i get all the same symptoms as you do and it almost started to feel like ive got another infection but usually around 3 weeks of being off tobi ill start feeling better...the weather for me also doesnt help it...I usually just take it easy and up my dose of treatments to clear the mucus out...I also have been taking nyquil at night to help me to sleep laying down and not cough as much.
I am experiencing that right now actually! Its HORRIBLE the way I feel right after stopping my cycle of tobi...i get all the same symptoms as you do and it almost started to feel like ive got another infection but usually around 3 weeks of being off tobi ill start feeling better...the weather for me also doesnt help it...I usually just take it easy and up my dose of treatments to clear the mucus out...I also have been taking nyquil at night to help me to sleep laying down and not cough as much.
I am experiencing that right now actually! Its HORRIBLE the way I feel right after stopping my cycle of tobi...i get all the same symptoms as you do and it almost started to feel like ive got another infection but usually around 3 weeks of being off tobi ill start feeling better...the weather for me also doesnt help it...I usually just take it easy and up my dose of treatments to clear the mucus out...I also have been taking nyquil at night to help me to sleep laying down and not cough as much.
I am experiencing that right now actually! Its HORRIBLE the way I feel right after stopping my cycle of tobi...i get all the same symptoms as you do and it almost started to feel like ive got another infection but usually around 3 weeks of being off tobi ill start feeling better...the weather for me also doesnt help it...I usually just take it easy and up my dose of treatments to clear the mucus out...I also have been taking nyquil at night to help me to sleep laying down and not cough as much.
I am experiencing that right now actually! Its HORRIBLE the way I feel right after stopping my cycle of tobi...i get all the same symptoms as you do and it almost started to feel like ive got another infection but usually around 3 weeks of being off tobi ill start feeling better...the weather for me also doesnt help it...I usually just take it easy and up my dose of treatments to clear the mucus out...I also have been taking nyquil at night to help me to sleep laying down and not cough as much.