TOBI and COLOMYCIN(colisitin)

rubyroselee · Jun 26, 2008

I do tobra 3 weeks on/1 week off and use colistin for flare ups. I get tightness with both meds, mostly just in the first few days of starting. I do nebbed albuterol before the treatments and it seems to help, but not completely. It's just one of those things that I deal with because I want to be able to take the antibiotic. It can be a hard few days but I get through it. I know it's very common to have tightness with both tobra/tobi and colistin. If the tightness got too severe for me I might consider not taking it, but I already know I'd personally be worse off without the med.

rubyroselee · Jun 26, 2008

I do tobra 3 weeks on/1 week off and use colistin for flare ups. I get tightness with both meds, mostly just in the first few days of starting. I do nebbed albuterol before the treatments and it seems to help, but not completely. It's just one of those things that I deal with because I want to be able to take the antibiotic. It can be a hard few days but I get through it. I know it's very common to have tightness with both tobra/tobi and colistin. If the tightness got too severe for me I might consider not taking it, but I already know I'd personally be worse off without the med.

rubyroselee · Jun 26, 2008

I do tobra 3 weeks on/1 week off and use colistin for flare ups. I get tightness with both meds, mostly just in the first few days of starting. I do nebbed albuterol before the treatments and it seems to help, but not completely. It's just one of those things that I deal with because I want to be able to take the antibiotic. It can be a hard few days but I get through it. I know it's very common to have tightness with both tobra/tobi and colistin. If the tightness got too severe for me I might consider not taking it, but I already know I'd personally be worse off without the med.

rubyroselee · Jun 26, 2008

I do tobra 3 weeks on/1 week off and use colistin for flare ups. I get tightness with both meds, mostly just in the first few days of starting. I do nebbed albuterol before the treatments and it seems to help, but not completely. It's just one of those things that I deal with because I want to be able to take the antibiotic. It can be a hard few days but I get through it. I know it's very common to have tightness with both tobra/tobi and colistin. If the tightness got too severe for me I might consider not taking it, but I already know I'd personally be worse off without the med.

rubyroselee · Jun 26, 2008

I do tobra 3 weeks on/1 week off and use colistin for flare ups. I get tightness with both meds, mostly just in the first few days of starting. I do nebbed albuterol before the treatments and it seems to help, but not completely. It's just one of those things that I deal with because I want to be able to take the antibiotic. It can be a hard few days but I get through it. I know it's very common to have tightness with both tobra/tobi and colistin. If the tightness got too severe for me I might consider not taking it, but I already know I'd personally be worse off without the med.

Shine · Jun 26, 2008

Hi Joannamc,

Just have one question for you: is your Colistin a generic or the one that Pizfer makes called Colymycin M parental?

The reason I ask is bc I use to be on Colymycin M parental(since I was a child) that Pizfer put out until now, bc our govt decided to change this drug to Colistin Link-
(a generic antibiotic) and I feel it makes the side effects even worse, tighter in the chest with horrible paralzying lung cramps than the Pizfer brand.

As generics go, they usually tend to have a lot of extra unessacery junk in the medication that can cause more problems than it's worth. As I found out. So that's why I am wondering if you or anyone else has experienced this kind of thing before or am I alone on this matter?

Also Tobi does cause quite a bit of tightness as well for me, but I find if you dilute it with 2mls of sodium chloride it's more tollerable.
Still there are those months when it's all too much to hand at time, so sometimes i'll take a complete break from my antibiotic neds and start taking Ciproxcin for 2 weeks or another oral antibiotic, depends on what the cultures are as to what I have.

Shine · Jun 26, 2008

Hi Joannamc,

Just have one question for you: is your Colistin a generic or the one that Pizfer makes called Colymycin M parental?

The reason I ask is bc I use to be on Colymycin M parental(since I was a child) that Pizfer put out until now, bc our govt decided to change this drug to Colistin Link-
(a generic antibiotic) and I feel it makes the side effects even worse, tighter in the chest with horrible paralzying lung cramps than the Pizfer brand.

As generics go, they usually tend to have a lot of extra unessacery junk in the medication that can cause more problems than it's worth. As I found out. So that's why I am wondering if you or anyone else has experienced this kind of thing before or am I alone on this matter?

Also Tobi does cause quite a bit of tightness as well for me, but I find if you dilute it with 2mls of sodium chloride it's more tollerable.
Still there are those months when it's all too much to hand at time, so sometimes i'll take a complete break from my antibiotic neds and start taking Ciproxcin for 2 weeks or another oral antibiotic, depends on what the cultures are as to what I have.

Shine · Jun 26, 2008

Hi Joannamc,

Just have one question for you: is your Colistin a generic or the one that Pizfer makes called Colymycin M parental?

The reason I ask is bc I use to be on Colymycin M parental(since I was a child) that Pizfer put out until now, bc our govt decided to change this drug to Colistin Link-
(a generic antibiotic) and I feel it makes the side effects even worse, tighter in the chest with horrible paralzying lung cramps than the Pizfer brand.

As generics go, they usually tend to have a lot of extra unessacery junk in the medication that can cause more problems than it's worth. As I found out. So that's why I am wondering if you or anyone else has experienced this kind of thing before or am I alone on this matter?

Also Tobi does cause quite a bit of tightness as well for me, but I find if you dilute it with 2mls of sodium chloride it's more tollerable.
Still there are those months when it's all too much to hand at time, so sometimes i'll take a complete break from my antibiotic neds and start taking Ciproxcin for 2 weeks or another oral antibiotic, depends on what the cultures are as to what I have.

Shine · Jun 26, 2008

Hi Joannamc,

Just have one question for you: is your Colistin a generic or the one that Pizfer makes called Colymycin M parental?

The reason I ask is bc I use to be on Colymycin M parental(since I was a child) that Pizfer put out until now, bc our govt decided to change this drug to Colistin Link-
(a generic antibiotic) and I feel it makes the side effects even worse, tighter in the chest with horrible paralzying lung cramps than the Pizfer brand.

As generics go, they usually tend to have a lot of extra unessacery junk in the medication that can cause more problems than it's worth. As I found out. So that's why I am wondering if you or anyone else has experienced this kind of thing before or am I alone on this matter?

Also Tobi does cause quite a bit of tightness as well for me, but I find if you dilute it with 2mls of sodium chloride it's more tollerable.
Still there are those months when it's all too much to hand at time, so sometimes i'll take a complete break from my antibiotic neds and start taking Ciproxcin for 2 weeks or another oral antibiotic, depends on what the cultures are as to what I have.

Shine · Jun 26, 2008

Hi Joannamc,
 
 Just have one question for you: is your Colistin a generic or the one that Pizfer makes called Colymycin M parental?
 
 The reason I ask is bc I use to be on Colymycin M parental(since I was a child) that Pizfer put out until now, bc our govt decided to change this drug to Colistin Link-
 (a generic antibiotic) and I feel it makes the side effects even worse, tighter in the chest with horrible paralzying lung cramps than the Pizfer brand.
 
 As generics go, they usually tend to have a lot of extra unessacery junk in the medication that can cause more problems than it's worth. As I found out. So that's why I am wondering if you or anyone else has experienced this kind of thing before or am I alone on this matter?
 
 Also Tobi does cause quite a bit of tightness as well for me, but I find if you dilute it with 2mls of sodium chloride it's more tollerable.
 Still there are those months when it's all too much to hand at time, so sometimes i'll take a complete break from my antibiotic neds and start taking Ciproxcin for 2 weeks or another oral antibiotic, depends on what the cultures are as to what I have.

AnD · Jun 26, 2008

Hmmm, that's a thought... I use the X-Gen generic Colistimethate instead of the name brand now, but I haven't noticed any more side effects, and this is the generic that the CF Services Pharmacy uses. I don't know if that helps or not, but I thought I would throw it out there just in case <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Oh, you also can send in for a free bottle of CF Source vitamins with every order of the X-Gen <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Shine, what strength of sodium chloride do you dilute the Tobi with? Is it the .09% ? I have the same problem with SOB, especially towards then end of round. I don't want to have to sit here nebbing any longer than I have to, but if it would help, I'll give it a try! It has gotten better since I started taking Magnesium though - I can actually tolerate a full dose for 2-3 weeks now.

AnD · Jun 26, 2008

Hmmm, that's a thought... I use the X-Gen generic Colistimethate instead of the name brand now, but I haven't noticed any more side effects, and this is the generic that the CF Services Pharmacy uses. I don't know if that helps or not, but I thought I would throw it out there just in case <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Oh, you also can send in for a free bottle of CF Source vitamins with every order of the X-Gen <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Shine, what strength of sodium chloride do you dilute the Tobi with? Is it the .09% ? I have the same problem with SOB, especially towards then end of round. I don't want to have to sit here nebbing any longer than I have to, but if it would help, I'll give it a try! It has gotten better since I started taking Magnesium though - I can actually tolerate a full dose for 2-3 weeks now.

AnD · Jun 26, 2008

Hmmm, that's a thought... I use the X-Gen generic Colistimethate instead of the name brand now, but I haven't noticed any more side effects, and this is the generic that the CF Services Pharmacy uses. I don't know if that helps or not, but I thought I would throw it out there just in case <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Oh, you also can send in for a free bottle of CF Source vitamins with every order of the X-Gen <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Shine, what strength of sodium chloride do you dilute the Tobi with? Is it the .09% ? I have the same problem with SOB, especially towards then end of round. I don't want to have to sit here nebbing any longer than I have to, but if it would help, I'll give it a try! It has gotten better since I started taking Magnesium though - I can actually tolerate a full dose for 2-3 weeks now.

AnD · Jun 26, 2008

Hmmm, that's a thought... I use the X-Gen generic Colistimethate instead of the name brand now, but I haven't noticed any more side effects, and this is the generic that the CF Services Pharmacy uses. I don't know if that helps or not, but I thought I would throw it out there just in case <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Oh, you also can send in for a free bottle of CF Source vitamins with every order of the X-Gen <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Shine, what strength of sodium chloride do you dilute the Tobi with? Is it the .09% ? I have the same problem with SOB, especially towards then end of round. I don't want to have to sit here nebbing any longer than I have to, but if it would help, I'll give it a try! It has gotten better since I started taking Magnesium though - I can actually tolerate a full dose for 2-3 weeks now.

AnD · Jun 26, 2008

Hmmm, that's a thought... I use the X-Gen generic Colistimethate instead of the name brand now, but I haven't noticed any more side effects, and this is the generic that the CF Services Pharmacy uses. I don't know if that helps or not, but I thought I would throw it out there just in case <img src="i/expressions/face-icon-small-wink.gif" border="0"> . Oh, you also can send in for a free bottle of CF Source vitamins with every order of the X-Gen <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
 
 Shine, what strength of sodium chloride do you dilute the Tobi with? Is it the .09% ? I have the same problem with SOB, especially towards then end of round. I don't want to have to sit here nebbing any longer than I have to, but if it would help, I'll give it a try! It has gotten better since I started taking Magnesium though - I can actually tolerate a full dose for 2-3 weeks now.

Wheezie · Jun 26, 2008

There is supposed to be an inhaled aztreonam coming out soon and there are trials for an inhaled zithromax as well. I believe one of our other cystics does the aztreonam (and I think she does two weeks on, two weeks off instead of every other month, as is typically prescribed). Tara, please clarify if you see this thread <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I do tobi and colistin, but I alternate every two weeks instead of every month.

Wheezie · Jun 26, 2008

There is supposed to be an inhaled aztreonam coming out soon and there are trials for an inhaled zithromax as well. I believe one of our other cystics does the aztreonam (and I think she does two weeks on, two weeks off instead of every other month, as is typically prescribed). Tara, please clarify if you see this thread <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I do tobi and colistin, but I alternate every two weeks instead of every month.

Wheezie · Jun 26, 2008

There is supposed to be an inhaled aztreonam coming out soon and there are trials for an inhaled zithromax as well. I believe one of our other cystics does the aztreonam (and I think she does two weeks on, two weeks off instead of every other month, as is typically prescribed). Tara, please clarify if you see this thread <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I do tobi and colistin, but I alternate every two weeks instead of every month.

Wheezie · Jun 26, 2008

There is supposed to be an inhaled aztreonam coming out soon and there are trials for an inhaled zithromax as well. I believe one of our other cystics does the aztreonam (and I think she does two weeks on, two weeks off instead of every other month, as is typically prescribed). Tara, please clarify if you see this thread <img src="i/expressions/face-icon-small-tongue.gif" border="0">

I do tobi and colistin, but I alternate every two weeks instead of every month.

Wheezie · Jun 26, 2008

There is supposed to be an inhaled aztreonam coming out soon and there are trials for an inhaled zithromax as well. I believe one of our other cystics does the aztreonam (and I think she does two weeks on, two weeks off instead of every other month, as is typically prescribed). Tara, please clarify if you see this thread <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
 I do tobi and colistin, but I alternate every two weeks instead of every month.

TOBI and COLOMYCIN(colisitin)

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