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Do you use a nebulizer? If so, do you prefer it to inhalers?

@Mandy brought this up on the daily roll call thread.  I think @GigiGibson and @Pljohns both find that nebulizers work better for them.  

Do you use nebulizers or inhalers more often?  Why?

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  • Pljohns

    Super thread!!!  I don't have a choice but use nebs.  The propellant in the inhalers is what my lungs doesn't like-at least that's the best we can determine.  Albuteral NEB works great but inhaler-the albuteral stops the asthma attack but another one starts simultaneously-and it does the same thing with any inhaler I use-I've tried inhaled steroids for maintenance and they do the same thing so it's nothing but nebs for me.  the inhalers worked great for the first year or so and then, just like my doc said would happen did, and things started not working so we had to throw everything but the kitchen sink at it again and nebs is the best we've come up with.  I'm the "asthma version" of a junkie-instead of drugs hidden everywhere I have nebulizers everywhere!  I have an ultrasonic in my purse, a big one in my car, one in the office, my main one at home and a back up at home and a small one that stays in my hospital bag.  Never thought I'd have to take my own neb to the hospital but one time their version of STAT ALBUTERAL was 6 hours later.  I swore then that I'd never go there without my own neb and meds.

    My neb manufacturer makes a mouthpiece designed specifically to use only when you are ill and need the meds to get deeper in your lungs.  I have one and have used it a few times and it is a big difference from my regular mouthpiece.

    I would give anything to be able to use an inhaler and just keep in my pocket or purse but I seem to be stuck with the "darth vader" as my kids call it.

  • K8sMom2002

    My dad uses a neb rather than an inhaler. It works better for him. And there have been times early in my asthma journey, when I would show up in mid-asthma attack at a primary care physician's office, the first thing they would do would be to slap a neb on me. 

    I'm interested in the mouthpiece that's for when you're ill — I think I would like to ask our doctor about using that as a step-up to prednisone. We've been fortunate (DD and I both) to have escaped the terrible flares that last for days for almost a year. In fact, the last time both of us were really sick was last May, when I wound up with pneumonia. (Please don't let me be jinxing myself!)

    At that time, DD's allergist was worried that her inhaler wasn't adequately controlling her symptoms and wrote a standing prescription for a taper of prednisone as part of her asthma plan. 

    But if we could TRY a neb with a mouthpiece that would get the meds into her lungs … that might be a good solution.

  • Pljohns

    The neb mouthpiece that is designed for those really bad times is the Pari LC Star-All of my nebs are Pari and they are wonderful.  I've totally WORN OUT 2 of the lithium battery packs for the TrekS(that's my regular neb).  It's nice to have the portability to walk around the house or get dressed or sit on the bed or whatever while I'm doing a neb.  Now, when I've been in the hospital, my big Pari comes out.  It's a work horse but I do so miss the portablility of the TrekS when I have to put it away.  It's just not meant for 8-10 nebs a day so I have no choice but get out the big Pari. The only non Pari I have is my ultrasonic that I carry in my purse and it's an Omron.

    I normally I use the LC Sprint and it does an amazing job-hardly any medicine left in the cup at all.  I've always been careful to change mouthpieces every 6 months along with tubing and filter on the neb and I boil the mouthpiece every week and rinse the mouthpiece after every use.  

     

  • K8sMom2002

    PLJohns, that's a good point about making sure to change mouthpieces and cleaning the mouthpiece. Thanks for the reminder!

    And I'm going to suggest that my dad check out your preferred nebs … he loves to go, but his neb is a big clunky table-top device, so he does his breathing treatments while he watches tv. 

  • Pljohns

    I absolutely can not brag on the TrekS enough-I've had 2 now-one stays in my car with the car adapter that it comes with(it's my older Trek S and the battery died so I replaced the entire neb and put just the neb in the car and the new one with the battery in the house) and the other is my main neb unless I'm post hospitalization.  They went through a spell a year ago that the manufacturer of their battery packs was AWFUL!  I had 3 different ones in less than 6 months-they would just stop working.  They replaced them every time but I needed something i could depend on.  I finally called Pari and the rep said they had some quality control issues and had stopped production of the battery packs until they could get it resolved.  As soon as they did, they shipped me a new one and it's been going great for almost a year now-no problems at all.  There are very few companies that I can say I've not had any problems with any of their products or if I did, they stood behind them but Pari is one.  I won't buy anything else

  • Shea

    I really do want a portable nebulizer.. and battery is nice because I get worried about power outages and needing mine. I found a link for the one PLJohns mentions: 

    I think I might purchase it… I do not think my insurance will cover it, but I think itd be worth it to save for, its only $73.00 on here.

  • Pljohns

    Thats the one I have but the $73 is without the battery-when you check out, it has the option of adding the battery for like $100 more.

  • K8sMom2002

    What would help you convince your insurance to pay for a battery operated neb, Shea? If you have frequent power outages, could you document each time and request a back-up neb? 

  • Pljohns

    Mine paid for this one-it went toward my deductible and we have to use an instate medical equipment company (can't do mail orders) but they covered it.  I've since bought a replacement battery that I knew they wouldn't cover because it was mail order, but we used the FSA account for it.  DH said it wasn't an option for me, so I got it.

  • K8sMom2002

    That's a great way to look at it — something that you needed anyway taking a bite out of that deductible! 

    I don't take advantage of my FSA like I should. We have a debit card, but I forgot to send it with DH to get DD's meds earlier this week, and now I've got to figure out how to get reimbursed for it. Maybe I should just give him the debit card because he's the one who usually picks up our meds?

  • Pljohns

    We used them up every year-now neither DH nor I have one with our current companies.  I know we don't get the tax break, but I set up a recurring transfer from our checking to our savings for the amount we were putting in the FSA.  Now when we need something expensive (like monthly meds) the money is there and it's not such a hit.

  • Shea

    I dont know much about insurance, besides that they are pains and never want to cover anything, but when I was freshly diagnosed and out of the hospital, just getting my regular nebulizer– I was having such a hard time getting it covered and I was so broke at the time, I started crying on the phone with them because I was like, I cannot survive without this and I have no money no job and a newborn… and THAT is when they finally covered it…. with me legitimately in tears fearing for my life… I would rather not get myself so frustrated and sad again trying to get them to cover this. I have had 2 outtages in the last year that were over 4 hours long.. but I just dont know if its worth even trying with the insurance…. I might… but worse comes to worse I will save up. 

  • Jen

    Shea – I think it would be worth a try with insurance.  Since you already have a backup plan of saving up for it, maybe you won't be as emotionally invested and it won't be so draining to try to get them to cover it, even if you have to appeal.  You could approach it more like a business transaction – You're trying a,b and c to get it covered.  If that doesn't work, you have plan d.  

  • Pljohns

    Definitely worth a try!  Most insurances will require a script from the doctor but other than that, they usually will cover at least part of it.  They have their "allowable" amouth they will cover-not usually much-but it's worth a try.  Another option is to rent one monthly from a home health agency-they will go directly through your insurance for payment and it's usually like $8/month-the good side-if something happens to it, you don't have to pay for it (like if the battery croaks).

  • Jen

    @Shea Have you thought any more about checking with your insurance to see if they might cover the new nebulizer?

  • K8sMom2002

    Another possibility, Shea, is to make sure your listed as a person with chronic health issues with your electricity provider. Some utility companies keep priority lists of people who are sick or dependent on electricity due to health issues, so that in the event of an outage, they try to restore power ASAP and they alert you ahead of time of any outages you may experience.

    And then there's this possibility: could you buy a portable power pack designed to jump off a car? My DH bought me a that I keep in the trunk of my car that supposedly will even run a blender — it has a place to plug in regular plugs. 

  • Pljohns

    That's a wonderful idea-if all you need is the block that plugs into the cigarette lighter in your car with regular power plugs on it, it's called an inverter.  I had totally forgotten about those-we had them when the kids were little and we traveled with 2 DVD players.  Best use of a cigarette lighter every invented~

  • K8sMom2002

    PLJohns, good point, and it would be much cheaper than the gadget my DH got me.

    But two things worry me about using car chargers to charge phones or run other devices.

    • I don't do well sitting in a car that's running and sitting still. 
    • In an emergency situation where there's widespread power outages, gas pumps won't work, either, so the gas in your tank is sometimes all that is available. 

    Still, it's a GREAT idea, and a wonderful stop gap measure. There are also power packs that are a bit cheaper that may run some things, but you'd have to check the wattage. Here's — one is about the size of a hard-back book, and the other is bigger (I'm thinking the size of a car battery?) but has the capability to be re-charged by solar power. Kind of cool!

  • Kathy P

    In power outages, I don't run the car the whole time. We'll do things like charge the phones or whatever with the key in auxiliary. We then run the engine for a few minutes to make sure we don't completely drain the battery.

    As for power inverters that plug into the cig lighter, we've had issues with those blowing fuses. So, it will depend on how much current your neb is trying to pull. I used to have a "trucker's lunchbox" designed for 12V that would blow the fuse in my van every time we tried to use it! And we blew a fuse in the truck on the way to the desert when we had several phones, the GPS and then plugged in my little battery pack to recharge. Ugh! 

  • K8sMom2002

    Good to know, Kathy — I remember that we had that issue with my mom's oxygen concentrator when we tried to plug it into the car's cigarette lighter.

  • Pljohns

    Definitely-if you plug in too much, it will blow a fuse every time.  So far, we've not had any issues with it.  If we are totally without power, we have purchased a generator to run the deep freezers on so I can plug into that long enough to charge the battery pack on my TrekS.  Once it's charge, I can normally get 3-4 days out of it depending on use.  With my normal meds-almost a week and with heavy meds added, just a couple of days.

  • Pljohns

    We have 2 deep freezers FULL and i didn't want to risk them so we bit the bullet and bought one a couple of years ago. We used to be without power all the time but the utility co. did something and we're on a different grid now and have not lost power since. We've never had to use it but if we need it, at least we have it.

  • K8sMom2002

    Well, that figures … the way to cure power outages is to buy an expensive generator!

    Here's a question … what's a quiet(er) neb that will work well? My dad uses his neb rather than inhalers, much like you do, but he is hard of hearing and wears hearing aids. Loud noises make it hard for him to hear, and his neb sounds like a jackhammer! It's an older model … Is there a quieter one that I might suggest to him?

  • Pljohns

    How often does he use his nebs?  My Pari TrekS is A LOT quieter than my big pari but the one I carry in my purse is an ultrasonic one and it is literally silent.  I've used it sitting in a meeting before and the person beside me never even knew I had it out.  I have the Omron ultrasonic-uses 2 AA batteries.  It's great for occasional use-a neb a day would be fine in it, but it's not meant for heaving duty use of several nebs a day.

  • Shea

    Great suggestions! I am going to my new allergy/rheumatology doctor tomorrow and I am brainstorming what to use the time for. I think I will first talk about meds and my goal of lowering on prednisone, and use that as an opening to ask for a prescription for a portable (batt operated) neb. I will have it for emergencies for power outrages or if I was taking a long day trip/car ride, just in case I really needed it. If that doesn't work, then I have been thinking of getting one of those portable power packs designed to jump a car, because that would get me through an emergency situation and has multiple uses.

  • Pljohns

    Here's the ultrasonic I have and it is absolutely silent.  I noticed they now have a power pack for it so you won't have to use batteries.  I can't say enough good about this neb-have had it for about 4 years and never a single problem with it.  It comes in a nice case that looks like a sunglass case but has enough room for me to put 2 vials of albuteral and 2 extra batteries in it if  I lay them length wise in the case.

  • K8sMom2002

    Shea, I hope you had good luck with the new allergist/rheumatologist today (it was today, right?) Fingers crossed you got a prescription for a new battery-powered neb.

    And PLJohns, I'm not sure how often he nebs, but I know at least once a day. I'll mention your suggestions — very cool on the absolutely silent neb. He does like to go, my dad, and a portable neb would make it where he didn't put off nebs. This time of year, he really finds himself struggling because of the pollen and the grass. 

  • Shea

    Well… I didn't get a chance to bring it up at this appointment–I just had so much to go over with my whole history, answering questions, showing her my health portfolio where I have highlighted major events and labs and sans…. and I am meeting again with her the last week of the month after I get some lab work completed, so I decided I will ask her then for the prescription for portable nebulizer. I did like the new doctor and I did feel kind of refreshed by her. She was knowledgeable about the disease (Churg-Strauss Syndrome) and she understood what was going on  and where I was at (my eosinophil count is down now, but I still have asthma/inflammation/vasculitis to treat, and she was up-to-date on the courses of treatment and medication options for my disease. SHe is running lab work that no doctor previously ran but that I have read up some on, so  I am glad to be getting these tests done. And I felt very comfortable talking with her. So, she's a keeper.  

  • Pljohns

    Shea-so glad you liked the new doc and even more glad that it sounds like she knew what she was talking about!  Hope the labs come back good for you!

  • K8sMom2002

    Oh, Shea! I am SO glad! A keeper doc is a reason to ! Did she have any thoughts on ways to reduce your steroids while not making things worse? 

  • Bhoffpauir

    I use both I prefer to use my inhaler for convince but I am having to use my nebulizer a lot out of necessity lately. I am having attacks that my inhaler has no effect on. When that happens I have to use the nebulizer. I'm also currently using the nebulizer for steroids. 

  • Shea

    Welcome Bhoffpauir, 

    I too get better relief from nebulizers, always have. I am sorry about the recent attacks, hopefully the nebulizers of steroids will help get them under control. How frequently are you needing them? (I do nebulizers twice a day).

  • Shea

    Oh, and K8SMOM, my doctor said to not come down on the prednisone yet, because my asthma is not real well-controlled, and she wants to get my labs back before she makes any medication changes. She has some medications in mind, but one of them I had a bad reaction to in the past. She said the reaction may not have come from that med because its not liist as a side effect and she uses it commonly on her practice,  and my reaction could have been from another factor. (The medications she suggested were imuran and cellcept). The side effects I experienced shortly after starting them were mental/break from reality-type event unlike anything have experienced before, and started when i started the med, stopped when i stopped, so I am pretty confident it was the medication. But I guess she thinks after hearing about it may have been coincidental, or a contributing factor because all that happened shortly after I was hospitalized the first time for CSS. Either way, I would be super-cautious if starting it again, I probably have like my mom stay with me.. When she does give me the ok that my asthma is controlled, I might just try to lower with no further medications, just really slowly 1mg at a time. Honestly, I do not want to start any new medications, I just want to work my way off medications.

  • Mandy

    Welcome BHOFFPAUIR! Hope you get better relief. Is there anything you can contribute the increase in symptoms to? Any triggers that can be avoided? 

    Shea, I hear you on the apprehension to start more meds and being cautious about the med you've taken before that gave you such horrible side effects. You know your body and you have the right to say no.

  • Bhoffpauir

    We have not determined why it has gotten so much worse the past few months. We will be doing  allergy testing as soon as it's controlled enough that the testing is safe

  • K8sMom2002

    BHOFFPAUIR, what type of nebulizer do you like to use? Is it a small portable one, or is it one that you use strictly at home? I hope you can get things under control enough to do some testing … if you could figure out triggers and ways to avoid those triggers, that would be awesome!

    Shea, I hear you on being cautious after a reaction like that. It sounds like you have a great plan in place if you try that medication again. Hopefully your doctor will be able to suggest something that would work just as well? When will you get your labs back?

  • Shea

    I scheduled an appt for labs on friday. My followup appointment is the last week of the month. Yeah, Mandy and k8smom, I think I will say no to the meds that gave me a bad reaction, and try to just start a low taper to see how I do. And i am going to ask for a prescription for a portable nebulizer at that appointment too. 

    BHOFF, allergy tests (skin prick) were very helpful for identifying triggers/connections between activities and things that make my asthma worse. That.. and journalling… and many, many flares …but, as long as you learn from them, you are making progress, and making progress is good. Sometimes when I get frustrated and stuck, I look back and see how far I have come and it re-inspires me. Like right now, I know my main triggers and how to avoid them in my home environment. Having my home set up as a safe space has really helped me physically and mentally dealing with chronic allergic disease and asthma. Then from being on here, I have learned tips to communicate with family/friends/aquaintances, stress relief from knowing I am not the only one going through these asthma issues, and learning tips on things like wearing masks during certain events, or bringing them with, and of course, now I am learning about portable nebs so thatll be cool to get one… hopefully soon. ☺

  • K8sMom2002

    Shea, you are so right about looking back … that's another plus for journaling. You can flip back and see, "Well, now last year, things were MUCH worse, and I survived it!"

    I hope you can get a portable neb that will free you up from having to be home at certain times … good luck on the labs and the appointment!

  • Bhoffpauir

    /k8smom2002. I use portable nebulizer. I have the trek s portable nebulizer. I got t it about a month ago. I keep it at work. I also have a respironics mini elite. I've had that one awhile. They both work wonderful. 

  • Pljohns

    I've got a TrekS too-actually 2 of them-one that I keep in the car that doesn't have a battery and the one in the house is my main one unless I'm sick then the big pari comes out.

  • Payton's Mom

    For Payton yes yes a million times yes! We have an albuterol inhaler, albuterol neb, and duoneb. Duoneb is our favorite hands down. Nebs are much preferred in my opinion.

  • Payton's Mom

    I didn't know they had portable nebs! I didn't know they had digital peak flows! 

    Tomorrow I have an asthma specialist coming to pur house to assess the environment for potential triggers that one night not consider. I wonder what will come up. They go through children's hospital – perhaps they will offer these resources or know where to go for them. They mentioned offering free heppa vaccums and allergen free bedding etc. 

  • Pljohns

    I don't know where you are, but justnebulizers.com is where I order all my stuff.  Super customer service, best prices and I've never had a problem with them.  That's where I got both my trekS (normal neb that you can purchase a lithium battery pack to go with-HIGHLY recomment it) as well as my Omron battery one that I carry in my purse all the time.  They carry all of the supplies (replacement mouthpieces, filters etc too) My digital peak flow meter cam from Amazon-it's the smaller Piko one (more expensive, but I've had both that amazon carries and this one is the best).

    Good luck with the asthma specialist today!

  • Jen

    Payton's mom – let us know how things go with the asthma specialist. 

  • Payton's Mom

    Ooo thanks for the info PLJohns.

    Well, the home visit was nice. We will have 8 visits in total. They are adding Payton to a research study where she will wear a bracelet for a week that has some chemical in it that collects all the stuff in the air around her to determine all the things she is in contact with. They will test the air quality in our home. They are training her in proper use of everything in addition to understanding what asthma is and what it effects in her body. The whole thing sounds awesome. Our first visit was very informative. She did a lot of work with Payton. She is focused on educating not just the parents but the kid, which I like. So Payton knows more about how to identify what is going on. There will be one visit dedicated to teaching Payton how to implement an asthma diary. It is very hands on, in depth and educational. Great for an engaged 7 year old. I learned a lot too. She will be back next Tuesday 🙂

    I'm happy they suggested Payton be involved in this program.

  • K8sMom2002

    Payton's Mom, that sounds AWESOME. Please, please start a thread with everything they suggest so that we can learn along with you. And I love the idea that they are including her in this as an "equal." My DD's doctors are wonderful in that way, too, and I think it helps kids learn how to manage chronic disorders from an earlier age.

    Is the study a pilot program? I'm really interested in that bracelet — who knows? Maybe it will turn up some ideas to help identify and reduce triggers. 

    PLJohns, thanks for the neb tip! And @Bhoffpauir, thank you, as well for the recommendation!

  • Pljohns

    Peyton's mom-that sounds AMAZING.  I'm so glad you have some help coming and it really sounds like they gear it for your daughter.