Neb Treatments

[blindhearted]

I am on Tobi, Albuterol (premix), & DNase. When I'm on Tobi, I mix Tobi with Albuterol (takes 45 mins), followed by DNase, then CPT or Vest. When I'm off Tobi, I do Albuterol mix with a half bullet of regular Saline (seems to help moisten my lungs), followed by DNase, then CPT or Vest. So, I was wondering what order does everyone do your nebs in?

 

[thelizardqueen]

The only neb I do is Tobra. I take 2 puffs of albuterol, followed by two puffs of Symbicort. I then do my physio, and then follow that up with my Tobra whenever I'm on it. I've been told that its better to do your TOBI treatments after physio so that you're not coughing up the meds, and the TOBI gets deeper into your lungs.

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>blindhearted</b></i>

I am on Tobi, Albuterol (premix), & DNase. When I'm on Tobi, I mix Tobi with Albuterol (takes 45 mins), followed by DNase, then CPT or Vest. When I'm off Tobi, I do Albuterol mix with a half bullet of regular Saline (seems to help moisten my lungs), followed by DNase, then CPT or Vest. So, I was wondering what order does everyone do your nebs in?</end quote></div>


1st and foremost - stop mixing your TOBI with albuterol. Not a good idea.

The order my physician had me do my meds in was the following:


1. Albuterol + Intal to dialate my airways
2. Hypertonic Salene
3. Pulmozyme
4. The Vest
5. TOBI (after you get ALL THE gunk out, TOBI has the best chance of getting far far far down into your airways)

 

[blindhearted]

My ped. cf doctor told me to mix the Albuterol with my Tobi, he said it wouldnt hurt anything. and my adult cf doctor has not told me any different...its been that way since I was put on Tobi (when it first came out).

I might need to ask my doctor about the order of things.

Anyway, please keep posting.

 

[Alyssa]

We were told the same order that Amy stated -- we were told to get everything diolated and cleared out first -- then get the antibiotic in last -- they want it to go as deep into the lungs and stay there as much as possible

 

[anonymous]

I was also told a NO-NO to mix anything with TOBI when I was on it. You shouldn't even use the same neb cup for anything that TOBI is used in without a thourough washing first.

As far as order, I just got back from clinic, and this is the order they told me (based on MY nebbed meds).... The doc actually sat me down and told me why in this order, but I forgot. <img src="i/expressions/face-icon-small-smile.gif" border="0">

1. Albuterol

2. Pulmozyme

3. Hypertonic Saline (if I decide to do it)

4. Colistyn (this would be the same as TOBI)

5. Pulmicort

Sonia

 

[Faust]

Careful...Those things will probably kill you.

 

[Faust]

By the way, if you need actual response, here goes: Don't mix pulmozyme period. No questions, no if's or buts. The stuff is extremely sensitive, considering it is made from Chinese hamster ovaries (totally honest), and the whole DNA makeup can change by bringing in any other form of chemical composition. As for everything else, well common sense should direct you to what you should or should not do...But then again, people are REALLY stupid so who knows.


Just leave pulmozyme alone in it's own neb.

 

[Jane]

How much does pulmozyme really help? My boys have been on and off. We haven't seen a difference so we haven't hurried to get back on.

We are always told never to mix anything too.

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>How much does pulmozyme really help? My boys have been on and off. We haven't seen a difference so we haven't hurried to get back on. </end quote></div>

I personally can tell a difference when I am not on Pulmozyme, but I have been on it ever since it came out in clinical trials. I do know that when I first started it I didn't tell a difference because I had a hard time maintaining a routine with it. When I told my docs that I wasn't doing it regularly because I didn't feel it did anything they told me that it is a drug that you will see more of a long term effect with ... meaning that it may not feel like it is helping but if it is done properly it has the ability to minimize the amount of lung damage you get and how quickly the damage "spreads/increases."

I do know that from the time I started taking it ... I want to say around 11 or 12 until I was about 19 my lung function did not drop, considering that your lung function is said to drop on average like 10% a yr I think it is helpful. **Not a full 10% but 10% of what you have .. so if you have 50% I am guessing it would drop 5% on average, at least that is what my docs told me the average was when I was 19. Who knows if that is different now.** I noticed a big drop in my lung function when I went off the Pulmozyme for a few months, but since I started it regularly again my lung functions have leveled out.

Lindsey

 

[JazzysMom]

I do albeuterol and pulmicort (I mix them), then Pulmozyme, then Hypertonic Saline, then my Vest then my nebbed antibiotic (Tobi or Colistin).

I feel Pulmozyme works, but it is definitely one of those meds that you have to be on for a bit or off for a bit to notice. I stopped taking it when I thought it wasnt making a difference. It became very difficult for me to bring up my sputum. When I went back on it I saw the difference.

 

[vinsmom]

We follow the same sequence as "amy". Xopenex, Pulmozyme, vest, then Tobi last. And you probbly should stop mixing the albuterol in with it as mentioned by another user.

 

[blindhearted]

Thanks everyone. I'm going to ask my doctor about the Albuterol/Tobi thing. Makes more sense the way everyone up here does it. Not sure why they told me it was okay or why they havent changed it since being in my adult clinic. But I want to ask to make sure since they told me to use the albuterol to delute my tobi some so it wouldnt be as rough on me, maybe they can tell me something else to do with it, specially since Tobi is still hard on my throat and lungs (terrible coughing/vomitting) when deluted. Btw, I dont mix anything with the DNase, it has its own neb. Pari Neb for the Tobi.

Does anyone know where you can purchase a Pari Neb? I am having a time getting one with the home care company that my insurance company says to use. They act like they dont know what I'm talking about or what they are doing....very fustrating.

 

[anonymous]

Danyell....

I've gotten them through CF Services Pharmacy. I think they are $11.00, and insurance should cover them. Also, if you are on TOBI, some CF clinics give them out for free, so you could also check with your RT at your clinic. I think if you get your TOBI through CF Services Pharmacy, you may also get one free, not sure though... its been awhile since I've been on TOBI.

Sonia

 

[luke]

Danyell,

If you want to personal message me your address I will send you a few pari neb kits courtesy of "my" home care company. You can then "take" it to your company and they can order it. I will even tell them how to bill for it, if you wish.


luke

 

[Scarlett81]

Albuterol
Pulmocort
Pulmozyme
TOBI (one month on one month off)
Hypertonic Saline

I do the Hyp S while I do the vest-this is what my doctor told me to do.
And just reiterating-stop mixing any of your meds! You can either make them innafective, or hypersensitive!<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[JustDucky]

Yeah, definitely speak to your CF center about the mixing of your meds...I was told to never mix any of my meds.

I do the following:
Xopenex
Pulmozyme
Vest therapy
and then the TOBI (28 on 28 off) to get the most absorbtion into my lungs after all of the gunk is cleared out.

Also as another person has said, have different cups for each med, I first scratch the first letter of the med on the cup with a needle and then run a permanent marker on it so that it will stay when I wash them. I also don't mix them up when I do that.

Good luck,
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

We were told to use Pulmozyme after vest. Albeutrol 1st then vest or during vest then after pulmozyme flovent.

 

[Ender]

i don't do too many nebs. I start of with:

Pulmicort and atrovent inhaler
Saline with GSH
Saline with OO.

i just emailed my doctor about using a surfactant like tween 80 to mop up the dead proteins in my lungs. It was in that research article i posted earlier. See what she says <img src="i/expressions/face-icon-small-smile.gif" border="0">

Kiel

 

[Faust]

The only neb I do is this: The night before my neb I drive around to all the different self serve gas stations in town, and I rub all the funk off of the gas pump handles with a very old wet sponge that I found in the greyhound bus station mens urinal. I then go home and run a little more water from the tap on it, then I squeeze all that out into my neb. I then neb that. So far I feel ok. Can't wait to see what my next culture shows.