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Hypertonic saline- waiting list?

AnD

New member
For those of you who are on a waiting list for the 10% HS, what are you doing in the meantime? I am on the CF Services waiting list as of today...

I thought I might just do once a day, but that only buys me another week. Anybody doing the 3% in the meantime?
 

AnD

New member
For those of you who are on a waiting list for the 10% HS, what are you doing in the meantime? I am on the CF Services waiting list as of today...

I thought I might just do once a day, but that only buys me another week. Anybody doing the 3% in the meantime?
 

AnD

New member
For those of you who are on a waiting list for the 10% HS, what are you doing in the meantime? I am on the CF Services waiting list as of today...

I thought I might just do once a day, but that only buys me another week. Anybody doing the 3% in the meantime?
 

cdale613

New member
Just a suggestion - start saving the vials, and not throwing everything out after one use. put them upright in a small glass and stick them in your fridge. That triples your supply.

If you aren't comfortable doing this, that's fine, but I do it, and don't think it increases my risk for becoming infected with any thing. I mean, we boil our nebs, and use one-use doses because its "sterile", but have you ever watched the little water droplets work their way up your 3 month old tubing, into your neb... into you... its not sterile. Breathing isn't sterile. Its just the way it is.

That doesn't mean I want to be wreckless, but I don't think using all the HS in a 15 ml vial over 24-36 hours is wreckless.

Chris

26 m w/CF
 

cdale613

New member
Just a suggestion - start saving the vials, and not throwing everything out after one use. put them upright in a small glass and stick them in your fridge. That triples your supply.

If you aren't comfortable doing this, that's fine, but I do it, and don't think it increases my risk for becoming infected with any thing. I mean, we boil our nebs, and use one-use doses because its "sterile", but have you ever watched the little water droplets work their way up your 3 month old tubing, into your neb... into you... its not sterile. Breathing isn't sterile. Its just the way it is.

That doesn't mean I want to be wreckless, but I don't think using all the HS in a 15 ml vial over 24-36 hours is wreckless.

Chris

26 m w/CF
 

cdale613

New member
Just a suggestion - start saving the vials, and not throwing everything out after one use. put them upright in a small glass and stick them in your fridge. That triples your supply.

If you aren't comfortable doing this, that's fine, but I do it, and don't think it increases my risk for becoming infected with any thing. I mean, we boil our nebs, and use one-use doses because its "sterile", but have you ever watched the little water droplets work their way up your 3 month old tubing, into your neb... into you... its not sterile. Breathing isn't sterile. Its just the way it is.

That doesn't mean I want to be wreckless, but I don't think using all the HS in a 15 ml vial over 24-36 hours is wreckless.

Chris

26 m w/CF
 

AnD

New member
I keep looking at that extra dose that's left over in the vial after I mix the two, and thinking "Why can't I suck that up into a sterile syringe and cap it and put it in the 'fridge? Or even freeze it? It's just sterile salt water... I wish someone could answer that- especially with the copays I have to pay... I may give it a try- I'll run it by my dr. Thanks <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 

AnD

New member
I keep looking at that extra dose that's left over in the vial after I mix the two, and thinking "Why can't I suck that up into a sterile syringe and cap it and put it in the 'fridge? Or even freeze it? It's just sterile salt water... I wish someone could answer that- especially with the copays I have to pay... I may give it a try- I'll run it by my dr. Thanks <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 

AnD

New member
I keep looking at that extra dose that's left over in the vial after I mix the two, and thinking "Why can't I suck that up into a sterile syringe and cap it and put it in the 'fridge? Or even freeze it? It's just sterile salt water... I wish someone could answer that- especially with the copays I have to pay... I may give it a try- I'll run it by my dr. Thanks <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 

blindhearted

New member
they say to throw away what is left after you mix them, but i have never done that. I keep what is left, up right and then put it until tall medicine bottle so the cap can be closed to keep anything from falling in. It does triple your supple. They say to throw it away because it is sterile, but you mix it in a syringe (or at least that is what they gave me) that is not wrapped or sterilized....so, what's the difference and it saves me money. My co-pay sucks too.
 

blindhearted

New member
they say to throw away what is left after you mix them, but i have never done that. I keep what is left, up right and then put it until tall medicine bottle so the cap can be closed to keep anything from falling in. It does triple your supple. They say to throw it away because it is sterile, but you mix it in a syringe (or at least that is what they gave me) that is not wrapped or sterilized....so, what's the difference and it saves me money. My co-pay sucks too.
 

blindhearted

New member
they say to throw away what is left after you mix them, but i have never done that. I keep what is left, up right and then put it until tall medicine bottle so the cap can be closed to keep anything from falling in. It does triple your supple. They say to throw it away because it is sterile, but you mix it in a syringe (or at least that is what they gave me) that is not wrapped or sterilized....so, what's the difference and it saves me money. My co-pay sucks too.
 

cdale613

New member
The response pharmacists have given me is: The FDA has passed guidelines that say meds for inhalation must meet sterility standards that are very similar to standards for injected drugs. This is why its so difficult to find HS - few pharmacies have the sterile hood necessary to meet the guideline.

I know several pharmacists who agree that this is a flawed policy, because the body, even a CFer's body, is much more vulnerable to infection from injected things than inhaled things. They aren't saying that inhaled infection doesn't happen, just that the current guideline is unreasonably strict.

When you talk to your Dr. point out that in the past, like when Mucomyst was first used, that CFers were told by their CF docs to make their own saline solution on the stove, mixing boiling water, salt, and a small amont of baking soda to make the solution to mix with the mucomyst. I also remember my pharmacist when I was young (pre-TOBI) dumping all the single use injection vials of Gentamycin or Tobra into one big brown bottle that I would use for months, drawing out the meds with the same syringe day in and day out.

The changes that have occurred haven't come down because of infection problems from these practices.... at least I've never seen anything to suggest that. They happened when TOBI and other meds were finally formulated for a small particulate inhalation size, and without the same nasty preservatives that were used in the older, injection antibiotics.

It makes me so upset about how expensive the HS is - I mean really, 60+ dollars for salt water?????

Chris

26 m w/cf
 

cdale613

New member
The response pharmacists have given me is: The FDA has passed guidelines that say meds for inhalation must meet sterility standards that are very similar to standards for injected drugs. This is why its so difficult to find HS - few pharmacies have the sterile hood necessary to meet the guideline.

I know several pharmacists who agree that this is a flawed policy, because the body, even a CFer's body, is much more vulnerable to infection from injected things than inhaled things. They aren't saying that inhaled infection doesn't happen, just that the current guideline is unreasonably strict.

When you talk to your Dr. point out that in the past, like when Mucomyst was first used, that CFers were told by their CF docs to make their own saline solution on the stove, mixing boiling water, salt, and a small amont of baking soda to make the solution to mix with the mucomyst. I also remember my pharmacist when I was young (pre-TOBI) dumping all the single use injection vials of Gentamycin or Tobra into one big brown bottle that I would use for months, drawing out the meds with the same syringe day in and day out.

The changes that have occurred haven't come down because of infection problems from these practices.... at least I've never seen anything to suggest that. They happened when TOBI and other meds were finally formulated for a small particulate inhalation size, and without the same nasty preservatives that were used in the older, injection antibiotics.

It makes me so upset about how expensive the HS is - I mean really, 60+ dollars for salt water?????

Chris

26 m w/cf
 

cdale613

New member
The response pharmacists have given me is: The FDA has passed guidelines that say meds for inhalation must meet sterility standards that are very similar to standards for injected drugs. This is why its so difficult to find HS - few pharmacies have the sterile hood necessary to meet the guideline.

I know several pharmacists who agree that this is a flawed policy, because the body, even a CFer's body, is much more vulnerable to infection from injected things than inhaled things. They aren't saying that inhaled infection doesn't happen, just that the current guideline is unreasonably strict.

When you talk to your Dr. point out that in the past, like when Mucomyst was first used, that CFers were told by their CF docs to make their own saline solution on the stove, mixing boiling water, salt, and a small amont of baking soda to make the solution to mix with the mucomyst. I also remember my pharmacist when I was young (pre-TOBI) dumping all the single use injection vials of Gentamycin or Tobra into one big brown bottle that I would use for months, drawing out the meds with the same syringe day in and day out.

The changes that have occurred haven't come down because of infection problems from these practices.... at least I've never seen anything to suggest that. They happened when TOBI and other meds were finally formulated for a small particulate inhalation size, and without the same nasty preservatives that were used in the older, injection antibiotics.

It makes me so upset about how expensive the HS is - I mean really, 60+ dollars for salt water?????

Chris

26 m w/cf
 

AnD

New member
Yep- just a little steep to me too, but I'll pay it just the same... *sigh* <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 

AnD

New member
Yep- just a little steep to me too, but I'll pay it just the same... *sigh* <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
 
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