So, my nebs are taking FOREVER. I'm literally nebbing for an hour and a half twice a day. When I go back to school in September, that's quickly going to turn into either non-compliance or no sleep. Neither of which will end well in the sick fall season. I asked my doctor today (via phone) if he would be comfortable prescribing me a PARI eflow. He seemed hesitant but will call me tomorrow. I'm still a bit confused though. I've been googling it all day but it seems like everyone has a different answer. My questions are:1. What medicines are okay to take in the eFlow? What's FDA approved?2. What medicines do you take in the eFlow? Are any of them (other than TOBI) specially formulated for it?3. Did insurance pay for it without a fuss? (I know all insurances are different, I'd just like some input ahead of time.) How long did it take to get? My current neb is working, but as I said, it's taking over half an hour to do HTS and over 20 minutes to do Xopenex, with about 15-20 for Dnase and 15-30 for TOBI depending on how long I can stand to sit there.4. How many cups come with it? I know the HTS can be taken with it but clogs the neb cups. Will the pharmacy send you multiple cups even if the drugs you're intending to take it with aren't FDA approved? (Doubt it. Worth a shot...)5. Is the handset the same as the Altera handset for Cayston? I know that the metal heads aren't the same, but are the bases interchangeable?6. Is there anything else I should know about the eFlow? Is it durable/does it last a couple of years? Can I do it while I'm vesting?Thanks so much for any answers.
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PARI eFlow Questions
- Thread starter ryry11
- Start date
Hey, I can't answer most of your questions mostly because I don't live in the US but I have been using PARI eflow for 3 years now and it works fine. I've used it with 4 different medicines, all approved by doctors: - Pulmozyme - Colomycin - Tobi - MucoClear Just gotta use different cups for the different medicines. They take on average 5 - 15min to nebulize, depending on the medicine. Good luck.
JustaCFmom
New member
Hi. I am also not in the US (in Israel). The doctors would ONLY recommend the e flow when I asked about all the hi tech alternatives. (Now, AFTER I bought the Aeroneb Go for my adult son, they asked me for the contact info in Israel. They want to do some research with it... It is a fraction of the cost (1300 NIS vs 5000!!), so I think they want to be able to recommend it to the patients and need the medical backing) My son doesn't communicate at all about if he is doing the inhalation and, if so, how it is for him. My other 2 kids have the e flow. The teenager takes care of her machine, but I am responsible for the 8 yr old's. PROS: FAST QUIET QUIET QUIET! BATTERY OPERATION, IF WANTED PORTABLE CONS: DELICATE aerosol head - can end up with equally slow inhalation time as micro holes get clogged up Too many pieces to clean & keep track of MUST BE HELD HORIZONTALLY - and I am ALWAYS nagging my 8 yr old not to let it sag from his mouth (picture this: \ vs --) because then the medicine doesn't get aerosolized :-(
I am not a fan of the design. SUMMARY: Overall, we are very happy with it. I hope the doctors get to the point of recommending the Aeroneb Go because I think it is a better design (it might be recommended in the UK?) CLEANING: I saw a recommendation somewhere about using an ultrasonic cleaner and it seemed like good advice. I am still trying to get a machine shipped to me here (there is nothing local). The aerosol head is VERY DELICATE and gets clogged up easily. It comes with a special cleaning unit that I use once a week. Right now, I just rinse the head with RO filter water. I know someone who uses boiled tap water for rinsing it, but the water here is so full of STUFF. I prefer using my RO water. Then, I sterilize it with a pot and a steamer insert. I set a timer so I don't forget it!! I almost melted my pari LC pieces when I forgot them boiling on the gas! I use a microwave sterilizer for all the plastic pieces. (I love it. I zap it for 8 minutes and everything is sterile until I open it for the next treatment)
Hope this was helpful. I think it is a must for anybody coping with such time consuming treatments and trying to get on with their life! I was doing the TOBI thing with my son and was going crazy with the 2 hours daily regimen. I am so grateful that we got rid of those bugs!
I am not a fan of the design. SUMMARY: Overall, we are very happy with it. I hope the doctors get to the point of recommending the Aeroneb Go because I think it is a better design (it might be recommended in the UK?) CLEANING: I saw a recommendation somewhere about using an ultrasonic cleaner and it seemed like good advice. I am still trying to get a machine shipped to me here (there is nothing local). The aerosol head is VERY DELICATE and gets clogged up easily. It comes with a special cleaning unit that I use once a week. Right now, I just rinse the head with RO filter water. I know someone who uses boiled tap water for rinsing it, but the water here is so full of STUFF. I prefer using my RO water. Then, I sterilize it with a pot and a steamer insert. I set a timer so I don't forget it!! I almost melted my pari LC pieces when I forgot them boiling on the gas! I use a microwave sterilizer for all the plastic pieces. (I love it. I zap it for 8 minutes and everything is sterile until I open it for the next treatment)
Hope this was helpful. I think it is a must for anybody coping with such time consuming treatments and trying to get on with their life! I was doing the TOBI thing with my son and was going crazy with the 2 hours daily regimen. I am so grateful that we got rid of those bugs!
I've had a couple of the Aeroneb Go as well, it worked fine for the time I had it but it didn't last very long. They seem to crack and give problems quite quickly and this was the same for every one of them I had so for the cost it just wasn't worth it if I'd have to be replacing the thing so often. So I went back to using my trusty, reliable Pari Sprint.
Edit: I'll add to this now that I remember exactly and just pulled out my last one I had. The cup itself would crack, not sure if from boiling which it's supposed to be able to take and it the way I prefer to clean them when possible. also every one I had started giving trouble with the cord that plugs into the back, I'd have to jiggle and fiddle with it till it got going and holt in in that position. Again, this happened with ALL of them I had plus my girlfriend's own too - she has PCD so takes nebs too. Maybe they's imprived the design and or materials now I don't know but a couple years ago that's my experience with them.
Edit: I'll add to this now that I remember exactly and just pulled out my last one I had. The cup itself would crack, not sure if from boiling which it's supposed to be able to take and it the way I prefer to clean them when possible. also every one I had started giving trouble with the cord that plugs into the back, I'd have to jiggle and fiddle with it till it got going and holt in in that position. Again, this happened with ALL of them I had plus my girlfriend's own too - she has PCD so takes nebs too. Maybe they's imprived the design and or materials now I don't know but a couple years ago that's my experience with them.
Neither of the clinics I go to will prescribe it.
"TOBI has to be specially formulated." Well, I want to switch to Cayston as soon as possible, so there.
"Shorter treatment times aren't necessarily better." And I'm sure getting no sleep when you're nebbing for 3 hours A DAY on TOBI months is the BEST option.
"I don't have enough information from my patients on how it works, so I won't prescribe it to my patients." ...What?
So. Thanks for all the advice, I think I'm going to go pound my head against a wall now.
Oh. Wait. I'm tied to the neb. I can't. Arrggghhh.
"TOBI has to be specially formulated." Well, I want to switch to Cayston as soon as possible, so there.
"Shorter treatment times aren't necessarily better." And I'm sure getting no sleep when you're nebbing for 3 hours A DAY on TOBI months is the BEST option.
"I don't have enough information from my patients on how it works, so I won't prescribe it to my patients." ...What?
So. Thanks for all the advice, I think I'm going to go pound my head against a wall now.
Oh. Wait. I'm tied to the neb. I can't. Arrggghhh.
I got one with my first dose of Cayston. I'm not sure if the eflow is FDA approved for anything else, but I know the head/cup that comes with Cayston, called the Altera, is only approved for Cayston. There is also a head/cup called the Trio that people use for other meds, including Tobi. I think, if you get your Tobi filled through Foundation Care, you can get the special formulation to use with the Trio....so, yeah, Tobi has to be specially formulated, but it would have been nice if they could have told you were to get it that way! But, I'm not sure if you would have to pay for the Trio OOP - and it's expensive. But, switching to Cayston is also a good option. It is much faster than Tobi. Including cleaning, it adds about 25 minutes to my day. You get a new head/cup with every Cayston refiil, so you end up with a ton of heads after a while. You have to be careful about nebbing other meds with an eflow because the dose you get will change compared to a traditional nebulizer. But, I've tried hypertonic saline in my leftover Altera cups because I figured getting too much salt water wouldn't hurt me. It made me cough a ton, but I felt like it may have been more effective (and I've read some info that has stated that nebbing HS in an eflow may be more effective). It was faster, but not enough for me to make it worth having to clean/manage another neb cup. The thing about the cups is that they are more of a pain to clean. So I was saving about 5-7 minutes nebbing in the eflow, but then spending an extra 5 minutes cleaning. Regardless, I wanted to highly recommend you get a new compressor! Holy cow, your treatments should not be taking that long and it is crazy that your doctor didn't suggest a new compressor! My treatments times for my compressor (Devilbiss Pulmoaide) and cups (Pari LC Plus) are albuterol & pulmozyme: 8 minutes. HS: 15-20 minutes. I get a new compressor about once a year...we CFers put so many hours on those things, we really can wear them out fast.