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non-steroidal long-acting inhaler for asthma

Dear all, 

I was diagnosed with asthma 1 year ago (age 38).  I have a wonderful doctor.  I am a professional singer and need to be able to treat my asthma with a non-steroidal inhaler for that reason; the steroidal medications cause tension in the vocal cords and make it impossible to sing.  For almost a year I took Foradil and it was amazing, my singing voice was not affected and my breathing and well-being were great.  But my doctor recently took me off it because it was discontinued by Merck, I was doing well and he wanted me to try being without it, and it carries risk of sudden death as a side effect.  Since stopping, I have not been doing as well.  My singing has suffered.  I now take Singular and use albuterol 3 times daily, 2 puffs. His plan is that I do this, and whenever a flare occurs, I take a multi-day course of prednisone and azithromycin.  He says he believes that eventually, I will get to the point where I don't need the prednisone and azith anymore.  I am going to follow his plan, but I am wondering: he said there is no non-steroidal long-acting inhaler for asthma.  All of them are for COPD only, and they all carry the risk of sudden death, a risk I should not take.  My question is if anyone, physician or patient, knows of any non-steroidal, long-acting inhaler for asthma that does not have the side effect/risk of sudden death?  Thank you for any and all input.

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  • Kathy P

    Welcome fanzzzy!I did not know that about the steroid inhalers and vocal chord tension.I'm not sure which inhalers are specified for copd only, but there is a lot if overlap of symptoms. Drugs can be used "off label" for other conditions than they were specifically tested for. Also. A number of the combo meds have the black box warning.What kind of doc is managing your asthma? Do you know what your triggers are? Do you do things to try to minimize them?

  • Fanzzzy

    Thanks for answering!  Yes, and my Foradil use was off label I think…  it is typically prescribed for COPD but because I had been undiagnosed for a while, he did it to calm exacerbated symptoms and allow me to work (sing).  I see a very experienced pulmonologist and he has done pulmonary function tests on me, etc., the whole shebang.  I don't know all my triggers – I know that too much cardio is bad (I cannot do too much sprinting or a full hour of aerobics or do tabata, but I can do a dance hour with routine, resistance training, etc).  I also had a very bad flare because I visited Australia – they were burning the bush near Sydney to prevent wildfires in the summer, and my lungs felt absolutely horrible there).   My doc said that is one of the worst triggers out there, and Australia has a very high asthma rate.  I live in Chicago and take excellent care of my living space – I have 3 air filters running 24/7, gave my cat to my parents (devastating), nasal rinse and spray morning and evening (Fluticasone and Azelastine), sleep with a clean humidifier every night, do the occasional dry salt inhaler, sing (good for asthma), eat well, I'm even getting an air purifier in my next car.  And as mentioned, I do albuterol 3 times a day, 2 puffs (and sometimes before and after exercise), and singulair at night.  All of that.  But my experience on Foradil was just so great - I didn't have to do inhaler 3 times a day or worry, I felt great – I guess that was the first time in my life I knew how normal people feel when they breathe.  And now I had a flare up because of Australia, I have to take this prednisone/antibiotic course, the first dose was last night and it's intense and gave me a major stomach upset. I just can't believe there are zero options for non-steroidal long-acting inhalers for asthma that do not carry a side effect / risk of sudden death?

  • Jen

    Hi fanzzzy, 

    Welcome to AAFA.  That does seem like a  tough situation – you want something that will help, but with minimal risks.  Sometimes, I know, we need to weight the risks vs the benefits.  Although you say your pulmo is very experienced, it might be useful to get  second opinion to see if you get any new ideas.

  • Fanzzzy

    Thanks Jen.  I suppose I could do that, I was hoping to get some help here possibly.  Health insurance is crazy these days, not willing to cover much at all and I cannot afford to double check right now, so hopefully soon.  In the meantime if anyone has any names of a non-steroidal long-acting inhaler for asthma that doesn't carry risk of sudden death, it would be helpful.  Thanks again!

  • K8sMom2002

    Fanzzzy … That has to be a tough situation!

    I'm wondering if you've thought of other work-around solutions. I know my mom was on Theophylline when she had COPD (along with asthma), along with her long-term control meds, and that piggy-backing seemed to help her, even though her lung function at the time was very poor.

    Also, Nemo88, another member here, . I'll flag him down and see if he can't share with you more about the breathing exercises that helped him. 

  • Nemo88

    Hey fanzzzzzy I so wish I could introduce you to my speech therapist he works primarily with professional singers and athletes in dealing with the vocal chords. Just wondering what kind of music do you sing and sorry I will probably ask a lot of questions I am a very severe asthmatic and I have been on those medications with the black box warnings since I was a child. I myself have been intubated for respiratory failure a few times in the past couple years just about anything that can happen has happened to me. 

    Okay back to some more questions do you take any aspirin or nsaid class medications like naproxen or advil? Also anything like blood pressure meds ace inhibitors or beta blockers. I am guessing no to those last few but all those classes of medications have been found to make asthma worse.

    Also are you a cougher with your asthma and if so is it dry and rough or deep and congested feeling and or do you have gasping cough with stridor? Again sorry I am asking all these questions it's just that if I can understand how your asthma is unique to you I can make some recommendations on meds and maybe some things your doctor can look at. Cause some meds I know of could help but it depends on your specific symptoms. Thing to especially remember with asthma is try not to let anxiety during the rough times get you and just focus on breathing.

    One suggestion I can recommend if you believe your vocal cords are involved is to have them observe you vocal cords during an attack. It's uncomfortable but would give you the most accurate picture if vocal dysfunction or something along those lines is occurring. Well I think I have rambled on enough and I hope I can be of some help hope you have a great Friday.

  • Jen

    Nemo – thanks for chiming in!

    Fanzzzy – I know.  Health insurance can be so frustrating.  I deal w some of that when it comes to coverage for some of my son's therapies (he has autism).  Hopefully we can get a few more people to chime in for you.  Hang in there!

  • Fanzzzy

    Hi Nemo, Thanks for replying.  I will try to answer all.  I am trained in classical voice but now singing pop and MT.  I don't take any of the types of meds you mentioned but I do take an antidepressant, a low dose of Adderall, an anti anxiety, and Armour for my thyroid.  When my asthma flares, I get thick mucous that I have trouble coughing out, I start sneezing a few times a day, my singing teachers start noticing that my inhaling between phrases is distractingly loud (aka wheezing), they tell me my singing voice sounds "thin" compared to normal, I lose stamina through the course of a song (and as we know the vocal climax is always at the end and we need our support intact), I used to get post nasal drip (that has become less a problem), and when it is a severe flare I get tension in my chest.  Even when well-treated, I am limited in my cardio aerobic capacities, so I do more strength training.  I just did that test where you exhale hard as possible into a gauge 3 times in a row: my first one was 1000 (the top capacity, yay!), my second one was 450, my third was 470 (these are big drops in stamina).

    Thing is, I have never had an actual "attack" that I know of….?  I've had more just flares or worse times.  I was initially diagnosed last year because I got bronchitis for the first time, it took a month or 2 to go away, and then I got it AGAIN.  Hence my visit to a pulmonologist.  And doc said it may be partly allergies/other triggers.  I went to Australia, and while in Sydney my asthma was HORRIBLE – turns out they were burning the bush to control wildfires and the city was full of the burn off.  That is the worst my asthma has ever been (and I no longer had Foradil).  I had a cat but he now has to live with my parents because my breathing problems were low grade but constant when he was with me.  So it's a combination of things.

    Does this help in terms of advice?

  • Nemo88

    You definitely sound like allergies are at play and allergies can become worse at any time or even develope at any age. So maybe adding in some simple daily allergy meds I would talk to your doctor though to see which ones they would recommend specifically for you. Then if those meds help awesome if they don't make enough of a difference I would suggest looking into seeing about getting allergy tested and maybe getting allergy shots which for alot of people I know that describe their asthma symptoms like you do have helped. 

    Now about the thick mucous best things I find if it's in the morning that it's the worst is one make some hot tea or coffee helps thin and loosen the crud. Also drinking a glass of orange juice I find can help loosen the crud thats close to coming out but wont. Also I find sometimes making the bathroom kind of like a sauna before I take I shower can also help to loosen up crud but have to be careful as even that could trigger issues. 

    Another thing I still wouldn't take the vocal cord dysfunction off the table either yet. Because what sound like could be bronchospasm could actually be the vocal cords having issues. Like I said that one is more of going to see an otolaryngologists and having them observe your vocal cords with a camera and having you do some breathing for them in order to observe the functionality and health of you vocal cords. One thing I should ask is do you ever feel the wheezing is in your neck or the back of your throat with a tight rigid feeling in your neck? Another question does it ever just happen suddenly like one minute your okay the next it's like a clamp shut your airways for just a few seconds but then right after the release you start coughing? 

    Just so you know asthma is complicated at first because they're so many variables and trigger combinations and much more that can cause it. Sometimes you get lucky and find the answers quickly sometimes it can take awhile  I would definitely in your case would start though with allergies and treating those because that could really improve your asthma. The other cruddy thing brush fires like you were talking about can do a lot to person with breathing problems and doesn't surprise me that it brought on bronchitis from the irritation of the smoke particulates while you were in Australia. It will take time and from what I have learned about the people in this community online and others we got your back and will do our best to help make it easier if possible.

  • Anne P

    Have you looked into allergy testing and allergy shots?  My asthma has improved tremendously since I started allergy shots, and I'm backing down my asthma meds now.

    It's definitely not a short-term fix, but curing the allergies can improve asthma in the long term.

    Is a possibility?  It's a long acting beta agonist inhaler.

  • Fanzzzy

    Hi Anne and Nemo, thanks again!!  I had allergy tests done about 3-4 years ago and everything came up negative except for a mild dust mite allergy, so I have dust mite covers on all pillows and mattress now.  I went to Dr. Bastian at Bastian Voice Institute yearly for cord checks, he didn't seem to observe any dysfunction, my last one was only 2 years ago.  Nero, the tightness does not seem to have that pattern for me… none of those other things you mention sound familiar.  It's basically just like when the asthma is flaring, I may have a period of time where the tightness appears and then I rest and it goes.  I've only experienced the tightness 2-3 times over the last years.  The bush fires didn't bring on bronchitis, they brought on a flare up of the asthma.  So now I am doing a course of prednisone/antibiotic to settle that flare up.  Hopefully it will stop the wheezing too.  But yesterday at my dance class I was a disaster.  I could not keep up and had to keep taking breaks, even though I am doing my daily albuterol (3x day/2 puffs) use and did a couple of extra puffs before class.  It was disheartening, but one thing of note is that the weather here yesterday was crazy – it was hot and extremely humid/heavy air, and the day ended in severe storms.  I think that must have had something to do with how hard it was for me yesterday, along with maybe the prednisone/antibiotic course?  

    Anna, I just looked up Serevent and it seems to carry that same warning: risk of asthma related death.  I am sure that's why my doctor did not recommend it, because I know he does prescribe it.

  • Kathy P

    There are 2 components to asthma – asthma and constriction. Different meds target the different issues.

    During normal breathing, the airways to the lungs are fully open. This allows air to move in and out of the lungs freely. Asthma causes the airways to change in the following ways:

    1. The airway branches leading to the lungs become overly reactive and more sensitive to all kinds of asthma triggers
    2. The linings of the airways swell and become inflamed
    3. Mucus clogs the airways
    4. Muscles tighten around the airways (bronchospasm)
    5. The lungs have difficulty moving air in and out (airflow obstruction: moving air out can be especially difficult)

    Has the doc suggested using an expectorant for the thick mucus? I have cough variant asthma (I typically cough a LOT instead of wheezing). I know things are bad when I stop coughing bc for me that means that there is too much mucus or it's too thick for me to cough around and keep moving.

    I've been on Advair for years and both my kids (now late teens) have used Symbicort for years. Docs do use those meds for asthma and not just COPD. Is your concern the black box warning? Have you asked the doc why he is not considering any of those?

  • Anne P
    Fanzzzy posted:

     

    Anna, I just looked up Serevent and it seems to carry that same warning: risk of asthma related death.  I am sure that's why my doctor did not recommend it, because I know he does prescribe it.

    IIRC, Foradil had the same black box warning.  The FDA required it for both drugs, starting around 2010 or so.

  • Fanzzzy

    Yes, that is part of the reason they took me off Foradil.  He says I am too young to have that risk on me.  I was taking Mucinex while in Australia just in case, but the doc said it would not help me much.  He did not recommend Advair or Symbicort or anything other than Albuterol/Singulair and the prednisone/antibiotic when flaring.  I think it has to do with whether it is steroidal and affects the vocal cords, vs what risks are involved.  That's why my question was so specific: does anyone know of any long-acting, non-steroidal inhalers/aerolizers/even a nebulizer that does not have the black box warning of sudden death attached to it?  The well-known brands of inhalers for asthma do not generally meet this criteria, many of them are steroidal and affect the vocal cords, preventing singing.

  • Mandy

    I have issues with over production of mucous secretions and coughing with my asthma. I don't know of any non steroidal inhalers…man I wish I did. I just want to ask why does your Doctor think taking your reliever 3 times a day is preferable to taking a smaller dose of a steroid daily? I get the VC implications but not being properly managed has to be taxing for you and your ability to perform. Hang in there! I hope you find some answers soon.

  • K8sMom2002

    I get what your doctor is saying, and I believe you should definitely heed a doctor's advice. I am NOT a doctor. 

    However, it's my understanding that black box warnings are usually targeted at specific populations.

    • Because of your age, does that make you more of a risk on this med?
    • Does that risk outweigh the benefits of you getting your asthma under control and avoiding the problems of worsening lung function? 

    A "for instance:" I have endometriosis. That means, statistically, I have three times the risk of developing ovarian cancer than a woman without endometriosis. Sounds scary, right?

    Well … not exactly. According to the National Cancer Institute, the was 11.9 per 100,000 women per year. Now to figure my risk, multiply that by 3. That's 35.7 women out of 100,000 per year. That doesn't sound so scary, does it?

    So look at actual numbers and frame it in a way that you can understand the risks vs benefits. It may be that the risks are too great — but it may also be that the risks aren't as great as you might think. 

    And who's to say that this is forever? Perhaps if your lungs could have a chance to heal (and you can stay out of Australia! ) , you could one day discontinue the meds.

  • Fanzzzy

    Thank you K8Smom!  Yes he mentioned that if I can use the prednisone and antibiotics in case of flares (finally finished that course today) and just be patient,I may not need them in the future, so he does hope it will improve.  I'm not going back to Australia, it wasn't very fun anyway lol, so that's that.  But now I know burnoff is a trigger, long-term low level exposure to cats (this one hurts), too much intense cardio, some seasonal allergies of some kind (dunno what kind, but it did get worse in the spring), so I can try to minimize exposure to those things, and just monitor what happened when it flares.  This forum was so encouraging and supportive, I'm just sad I didn't get any answer – probably because the answer is that there is no non-steroidal long acting asthma inhaler without risk of sudden death.  I don't know if any pharma is working on one but I hope so.  Thanks everyone.

  • Kathy P

    I do think the answer is that there aren't any. All the LABA have the black box warning.

    We are here to support you through flares or just daily struggles 

  • Jen

    Hi fanzzzy  - just checking in to see how things are going.  Stop in to update us when you get a chance.

  • K8sMom2002

    @Fanzzzy, just checking on you to see how things were going with you and if you'd had any more flares. We're definitely here for you!