New to Colistin

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Gingerloveslife

New member
Hey Everyone! My doctors have finally decided to let me try inhaled Colistin since my PA is multidrug resistant. The instructions on the box was not clear so I am wondering if yall could tell me what you all do.

I was given vials of 150 mg Colistimethate and 4mL vials of sterile water and syringes and told to mix. I have heard from some sources though that you only draw out 2ML but mine did not say this.

Also, what side effects should I be on the outlook for and do yall feel like this drug is beneficial in your routine?

I was in the Aztreonam study and did well in it but so far I have been unable to get it through the extended access program. On the other hand, I do not tolerate TOBI at all!

Any advice on Colistin would be greatly appreciated. I get extremely worried anytime I start a new med and I am especially so this time since that one CFer died because of it. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ginger
 
G

Gingerloveslife

New member
Hey Everyone! My doctors have finally decided to let me try inhaled Colistin since my PA is multidrug resistant. The instructions on the box was not clear so I am wondering if yall could tell me what you all do.

I was given vials of 150 mg Colistimethate and 4mL vials of sterile water and syringes and told to mix. I have heard from some sources though that you only draw out 2ML but mine did not say this.

Also, what side effects should I be on the outlook for and do yall feel like this drug is beneficial in your routine?

I was in the Aztreonam study and did well in it but so far I have been unable to get it through the extended access program. On the other hand, I do not tolerate TOBI at all!

Any advice on Colistin would be greatly appreciated. I get extremely worried anytime I start a new med and I am especially so this time since that one CFer died because of it. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ginger
 
G

Gingerloveslife

New member
Hey Everyone! My doctors have finally decided to let me try inhaled Colistin since my PA is multidrug resistant. The instructions on the box was not clear so I am wondering if yall could tell me what you all do.

I was given vials of 150 mg Colistimethate and 4mL vials of sterile water and syringes and told to mix. I have heard from some sources though that you only draw out 2ML but mine did not say this.

Also, what side effects should I be on the outlook for and do yall feel like this drug is beneficial in your routine?

I was in the Aztreonam study and did well in it but so far I have been unable to get it through the extended access program. On the other hand, I do not tolerate TOBI at all!

Any advice on Colistin would be greatly appreciated. I get extremely worried anytime I start a new med and I am especially so this time since that one CFer died because of it. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ginger
 
G

Gingerloveslife

New member
Hey Everyone! My doctors have finally decided to let me try inhaled Colistin since my PA is multidrug resistant. The instructions on the box was not clear so I am wondering if yall could tell me what you all do.

I was given vials of 150 mg Colistimethate and 4mL vials of sterile water and syringes and told to mix. I have heard from some sources though that you only draw out 2ML but mine did not say this.

Also, what side effects should I be on the outlook for and do yall feel like this drug is beneficial in your routine?

I was in the Aztreonam study and did well in it but so far I have been unable to get it through the extended access program. On the other hand, I do not tolerate TOBI at all!

Any advice on Colistin would be greatly appreciated. I get extremely worried anytime I start a new med and I am especially so this time since that one CFer died because of it. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ginger
 
G

Gingerloveslife

New member
Hey Everyone! My doctors have finally decided to let me try inhaled Colistin since my PA is multidrug resistant. The instructions on the box was not clear so I am wondering if yall could tell me what you all do.
<br />
<br />I was given vials of 150 mg Colistimethate and 4mL vials of sterile water and syringes and told to mix. I have heard from some sources though that you only draw out 2ML but mine did not say this.
<br />
<br />Also, what side effects should I be on the outlook for and do yall feel like this drug is beneficial in your routine?
<br />
<br />I was in the Aztreonam study and did well in it but so far I have been unable to get it through the extended access program. On the other hand, I do not tolerate TOBI at all!
<br />
<br />Any advice on Colistin would be greatly appreciated. I get extremely worried anytime I start a new med and I am especially so this time since that one CFer died because of it. Thanks so much! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Ginger
 
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lightNlife

New member
One of the things you'll notice with colistin is that it will make your tongue and lips feel numb and tingly. This is normal when taking it orally; the same thing happens when taking it as an IV.

You'll want to call your doctor to double check how much colistin he wants you to inhale and whether it's to be done twice a day. Usually when mixing it with the 4 mL of sterile water, you use half of it (2mL) for your morning neb, and the other half in the evening. Do NOT premix more than one day's worth at a time, because it can start doing some funky reactions in the vial.

That's great that you did well in the Aztreonam study. I'm hoping to start it myself soon along with inhaled levaquin!
 
L

lightNlife

New member
One of the things you'll notice with colistin is that it will make your tongue and lips feel numb and tingly. This is normal when taking it orally; the same thing happens when taking it as an IV.

You'll want to call your doctor to double check how much colistin he wants you to inhale and whether it's to be done twice a day. Usually when mixing it with the 4 mL of sterile water, you use half of it (2mL) for your morning neb, and the other half in the evening. Do NOT premix more than one day's worth at a time, because it can start doing some funky reactions in the vial.

That's great that you did well in the Aztreonam study. I'm hoping to start it myself soon along with inhaled levaquin!
 
L

lightNlife

New member
One of the things you'll notice with colistin is that it will make your tongue and lips feel numb and tingly. This is normal when taking it orally; the same thing happens when taking it as an IV.

You'll want to call your doctor to double check how much colistin he wants you to inhale and whether it's to be done twice a day. Usually when mixing it with the 4 mL of sterile water, you use half of it (2mL) for your morning neb, and the other half in the evening. Do NOT premix more than one day's worth at a time, because it can start doing some funky reactions in the vial.

That's great that you did well in the Aztreonam study. I'm hoping to start it myself soon along with inhaled levaquin!
 
L

lightNlife

New member
One of the things you'll notice with colistin is that it will make your tongue and lips feel numb and tingly. This is normal when taking it orally; the same thing happens when taking it as an IV.

You'll want to call your doctor to double check how much colistin he wants you to inhale and whether it's to be done twice a day. Usually when mixing it with the 4 mL of sterile water, you use half of it (2mL) for your morning neb, and the other half in the evening. Do NOT premix more than one day's worth at a time, because it can start doing some funky reactions in the vial.

That's great that you did well in the Aztreonam study. I'm hoping to start it myself soon along with inhaled levaquin!
 
L

lightNlife

New member
One of the things you'll notice with colistin is that it will make your tongue and lips feel numb and tingly. This is normal when taking it orally; the same thing happens when taking it as an IV.
<br />
<br />You'll want to call your doctor to double check how much colistin he wants you to inhale and whether it's to be done twice a day. Usually when mixing it with the 4 mL of sterile water, you use half of it (2mL) for your morning neb, and the other half in the evening. Do NOT premix more than one day's worth at a time, because it can start doing some funky reactions in the vial.
<br />
<br />That's great that you did well in the Aztreonam study. I'm hoping to start it myself soon along with inhaled levaquin!
<br />
<br />
 
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nu65

New member
I agree with LightNLife, check with your doc about the dosage but normally its 2 mL of sterile water you mix with the powdered colistin. I'm actually doing colistin right now! Make sure you do albuterol neb (or inhaler, whichever you use) beforehand. I've always been told to do colistin last of the nebs because it is the antibiotic. I've found that if I skip the albuterol beforehand, I get really tight-chested. I would also recommend not using the VEST during colistin since you take smaller breaths and can't get the antibiotic to the smaller airways.

Good luck! I've never found that colistin alone made me feel better, its been a combination of things.
 
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nu65

New member
I agree with LightNLife, check with your doc about the dosage but normally its 2 mL of sterile water you mix with the powdered colistin. I'm actually doing colistin right now! Make sure you do albuterol neb (or inhaler, whichever you use) beforehand. I've always been told to do colistin last of the nebs because it is the antibiotic. I've found that if I skip the albuterol beforehand, I get really tight-chested. I would also recommend not using the VEST during colistin since you take smaller breaths and can't get the antibiotic to the smaller airways.

Good luck! I've never found that colistin alone made me feel better, its been a combination of things.
 
N

nu65

New member
I agree with LightNLife, check with your doc about the dosage but normally its 2 mL of sterile water you mix with the powdered colistin. I'm actually doing colistin right now! Make sure you do albuterol neb (or inhaler, whichever you use) beforehand. I've always been told to do colistin last of the nebs because it is the antibiotic. I've found that if I skip the albuterol beforehand, I get really tight-chested. I would also recommend not using the VEST during colistin since you take smaller breaths and can't get the antibiotic to the smaller airways.

Good luck! I've never found that colistin alone made me feel better, its been a combination of things.
 
N

nu65

New member
I agree with LightNLife, check with your doc about the dosage but normally its 2 mL of sterile water you mix with the powdered colistin. I'm actually doing colistin right now! Make sure you do albuterol neb (or inhaler, whichever you use) beforehand. I've always been told to do colistin last of the nebs because it is the antibiotic. I've found that if I skip the albuterol beforehand, I get really tight-chested. I would also recommend not using the VEST during colistin since you take smaller breaths and can't get the antibiotic to the smaller airways.

Good luck! I've never found that colistin alone made me feel better, its been a combination of things.
 
N

nu65

New member
I agree with LightNLife, check with your doc about the dosage but normally its 2 mL of sterile water you mix with the powdered colistin. I'm actually doing colistin right now! Make sure you do albuterol neb (or inhaler, whichever you use) beforehand. I've always been told to do colistin last of the nebs because it is the antibiotic. I've found that if I skip the albuterol beforehand, I get really tight-chested. I would also recommend not using the VEST during colistin since you take smaller breaths and can't get the antibiotic to the smaller airways.
<br />
<br />Good luck! I've never found that colistin alone made me feel better, its been a combination of things.
 
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