Is the PARI eRapid® Nebulizer System worth what it costs?
Does anyone have any long-term experience with the PARI eRapid® Nebulizer System?
After 15 years of lugging different large and small nebulizers around when traveling, I am ready to spend a lot of money on something small, easy to clean, and fast, so long as it is rugged and will last a few years. I have to nebulize four vials of stuff (including saline) twice daily. I'm not loving traveling anymore because of the chore of having to spread out all my stuff, sometimes with very little available surface area, wherever I am, not to mention having to wake up an hour before everyone else to nebulize.
Information from anyone who knows this product is appreciated.
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HI, I've written a lot about the Pari eRapid and have owned it for a couple of years. Bottom line it's quick, quiet and reliable. It's been used for years in the CF world. Pricey but glad I $plurged and have zero regrets. PARI says that the handset needs to be replaced every 6 months but I go much longer than that. The biggest drawback is that it leaves behind about 1 mL of saline. Keep in mind if you take it traveling, it still needs to be cleaned (soaked in soapy water) and steamed or boiled for sterilization. Not microwave safe. I boil mine in a ramen pot and let it air dry when I travel by plane. Traveling by car, I take the Grownsy baby bottle steamer with me without the tank so it takes up let room.
Here's a link to some of the things I've written.
https://connect.mayoclinic.org/discussion/survey-nebulizers-and-compressor-systems-speed-etc/?pg=4#comment-1269273
PS - I purchased it from Nebology during an extra discount time. They recently ran an extra discount over Independence Day weekend. Look for another during the next holiday period.
Mostly it is good, and definitely faster. You could take it travelling but you need to boil some parts after each use. Main problem is the buttons which wear out, and they're under the surface, so you can't do anything about it when it stuffs up. Overall, I would still get it because it is so much faster and quieter.
I use the ePari for study medication (or placebo). It's provided by the study. I don't get to keep it (I already asked). I can totally understand spending the $$ to have a really quiet and fast machine, it's night and day from others. You do have to boil the equipment every day and the protocol I'm on has us replace the little screen part that goes inside the handset once a week.
The power cord started getting wonky on mine at 9 months. The study replaced it.
What study are you participating in?
I'm in the "ENCORE" study, which has many sites in U.S. & internationally and is comparing Arikayce vs placebo, + ethambutol + Azithromycin. I'm fortunate to be treated at the NYU BE/MAC program. They are heading up this study. And several others as well, so many patients there have ready access to cutting edge research & treatment.
https://clinicaltrials.med.nyu.edu/clinicaltrial/1544/encore--randomized-double-blind/
Would a baby bottle sterilizer be sufficient, or is boiling necessary?
To sterilize the eRapid or eFlow (same thing, different name; one is called one in the U.S. and the other in Europe), I soak in hot tap water with a drop of Dawn. Then I sterilize in Boloco baby bottle sterilizer at home. On the road I use either a ramen pot for boiling or Grownsy baby bottle sterilizer. I used to sterilize everyday, now I go every couple to few days for sterilization but everyday I give it a Dawn soak. How often for cleaning/sterilization is personal preference taking into account your comfort level and disease state.
Thanks to all of you for your help in making this decision. What this confirms for me is that this disease, while not the worst thing one can have, is a real pain to manage and live a normal life. There really are no shortcuts.
Hopefully, Brensocatib will bring some relief to many of us. One of its developers told me that it should minimize the need for nebulizing, but I will believe it when I see it. I also fear the likely expense (two drugs I used to take ballooned to the cost of a mortgage payment when I went on Medicare, so I had to downgrade), but I am also hopeful.
Did you try GoldcardRX
I get my Azithromyacin and Ethambutol at CVS and Publix. Less than my copay with CIGNA
Did you see my email?