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Reactive Airway Disease Syndrome – Asthma

I am 52 and developed asthma over a year ago. I have always been extremely allergic to molds. When the building I worked in became musty smelling, stagnant air, and after months showed many water leaks throughout, my sinus pain, congestion, headaches to name a few symptoms, turned in to full blown asthma which my doctor calls Reactive Airway Disease. I use to ride my horse, ride my home Peloton spin bike, hike, run, always athletic from a young age to a house bound mom. If I am around someone with strong perfume, I will have 2-3 days of nebulizer usage and too sick to get off the couch. I am still learning all my triggers. I do wear a mask when I am out.

Breo doesn't work for me at all. I use Annuity Elipta, Singular tablet, rescue inhaler and the home nebulizer when I have an attack which makes me feel stomach sick with a heart pounding out of my chest. I am searching for any / all information to try to gain control of this…my son says "you're always tired," which is correct because I don't sleep well. 

Thank you! 

 

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  • Melissa G

    Hi Luna! Welcome to the AAFA Forums! So glad that you found us! 

    Here is a free online  Do you have an 

    What are you doing to 

    Sending you lots of !

  • Luna

    thank you! I will definitely take the Asthma Action Plan. 

    My house is completely controlled. I have things covered, hard floors, and hypoallergenic dogs, no plants. My triggers are mold, perfume and exercise and usually the response is hours after the exposure. For example, if I exercise (cardio) one day, I can plan to be down for 2 days after. Perfume is the same. I am not sure if this is the same for everyone, but the pain is bad! I have a high pain threshold being athletic but after two days of pain, I start to lose perspective and become depressed. After nebulizer 2x/day for up to two days, I begin to feel better. It makes me not want to go anywhere.

     

  • Melissa G

    Here is some information on . Does your doctor have you pre-treating with your rescue inhaler before exercise?

  • Luna

    Yes, I use my inhaler before exercise. I am only doing Pilates and this by itself is okay but I find that daily activities are a problem. I usually chose two things to do that day and stick to it or i have to nap. Most days I nap to be honest. Any form of cardio causes an adverse reaction. 

  • K8sMom2002
    Luna posted:

    thank you! I will definitely take the Asthma Action Plan. 

    My house is completely controlled. I have things covered, hard floors, and hypoallergenic dogs, no plants. My triggers are mold, perfume and exercise and usually the response is hours after the exposure. For example, if I exercise (cardio) one day, I can plan to be down for 2 days after. Perfume is the same. I am not sure if this is the same for everyone, but the pain is bad! I have a high pain threshold being athletic but after two days of pain, I start to lose perspective and become depressed. After nebulizer 2x/day for up to two days, I begin to feel better. It makes me not want to go anywhere.

     

    Welcome, Luna! You will find great support here! 

    A couple of questions so I can understand your particular situation better …

    You mention pain … what kind of pain exactly? Managing pain can be quite stressful!

    And are you allergic to pet dander? You mentioned a hypoallergenic dog, but points out that there is not really a "hypoallergenic" dog.  Of course, if pet dander isn't an allergic or asthma trigger, then it might not be an issue for you.

  • Luna

    This is a definition to what my illness is:

    Reactive airways dysfunction syndrome. A form of irritant-induced asthma also known as occupational asthma. Reactive airways dysfunction syndrome (RADS) describes breathing problems that develop after a single exposure to high levels of an irritating vapour, fume, or smoke.

    I am allergic to a couple molds, olive oil/trees, walnuts. I only have reactions at this time to perfumes, firewood logs, and exercise even when I use an inhaler before exertion. I mention the dogs because I do keep the house clear of dust etc to reduce possibilities. 

    Pain is on the right side of my sternum / chest. The pain can be very intense. Starts as dull pain and 2nd / 3rd day it becomes sharp pains. 

     

     

  • K8sMom2002
    Luna posted:

    I am allergic to a couple molds, olive oil/trees, walnuts. I only have reactions at this time to perfumes, firewood logs, and exercise even when I use an inhaler before exertion. I mention the dogs because I do keep the house clear of dust etc to reduce possibilities. 

    Pain is on the right side of my sternum / chest. The pain can be very intense. Starts as dull pain and 2nd / 3rd day it becomes sharp pains. 

    Just a word of caution since you noted that you were allergic to walnuts: Some fireplace starter logs have used ground tree nut shells or peanut shells in the past. 

    That pain sounds very challenging! Have you reported it to your doctor? Do you see any connection with your other symptoms or any sort of trigger that is associated with it? You mentioned that you have a high pain tolerance … and pain is a way that our bodies are telling us that something is wrong.

  • Luna

    Thank you. I do not use fire starter logs. Unfortunately since my disease is a result of an exposure to one of my allergies (mold), my body is overreacting now. I have always been bothered by strong perfumes but now its effects last 2-3 days of breathing difficulty and pain. My doctors have been very supportive and are aware of my issues. I am here on this forum so I can hopefully connect with others who may have similar health issues and learn from each other. I want to get well if that is possible, I want to be back as healthy as I once was. I am very motivated and willing to take additional steps to get well or at least get to a point that my illness is controlled. I see how others with asthma (not RADS) are able to still be active. I wish I could have that…I appreciate all the support and information that others can provide. 

  • LK

    Welcome Luna!    

    I am sorry you are having to deal with this.  I'm in my mid 50s and was diagnosed just over six years ago with adult-onset asthma.  Until about a year ago was still able to ride my horse every day so I understand how hard this is.  I had had a mild chronic cough for years but thought it was just because I was in the dusty environment of the horse barn and also was a therapeutic riding instructor.  My doctor had me take the methacholine challenge and that set off my severe asthma.  Some of my triggers are strong scents, car and diesel exhaust, cold air, humid air, smoke of any kind, weather changes, strong winds, etc.  

    I am glad you have a good team of doctors and keep them informed.  The people here on theses forums are a wonderful group for support and learning how they live with asthma.  They have seen me through many days when I have been struggling with how to keep my life on an even keel with asthma.

    Glad you have a mask and wear it.  I also wear a mask and have taken to wearing it when I am out shopping because by the time I notice someone who has strong perfume or a cigarette smoke odor it has already affected my lungs.  

    It must be hard to get things done when you still have kids at home.  My severe asthma didn't show up until our youngest was off at college.  I understand the tiredness that hits after a flare.  It's like your body is trying to recover and just wants to rest.  Not that rest is something moms ever really get to do! 

    Hope this helps a little bit!

    What kind of horse do you have?  I have a warmblood and used him to show hunters. 

    Hope you are doing better today!  Please let us know how you are.

  • Pljohns

    Welcome Luna-I'm sorry you had a need to find us but very glad you did!  You will find the most amazing group here that truly understands what it's like to live with what we all do.  

    I was diagnosed 8 years ago-in my mid 40's with no prior issues at all.  I have severe uncontrolled non allergic persistent asthma with a list of drug allergies a mile long.  Difficult to control is an understatement for me.  i can't use inhalers so all of my meds are nebulizers.

    do you keep any type of journal?  A lot of us here have found that keeping a journal has been a great way for us to determine what triggers us part of the time.  I keep mine electronically and note weather, if I'm not feeling good, sleep and exposure to what few triggers we know about.  Perfume or strong smells in general are a definite trigger for me so I always note "perfume assault" and things like that.  I have about 5 solid years of data, along with peak flow readings that I do every day, but having that much data has allowed me to find trends that I wouldn't have been able to find otherwise-like weather.  In the early days of trying to figure out things, I would take it with me to my doctors appointments so he could see what caused me issues and make suggestions what to do about it.  

    Having a good care team is imperative.  I've had the good, the bad and the ugly when it comes to that and am finally back to the good.  A lot of us have found that we have to be our own advocates and be 100% honest with our docs (I'm sitll working on both of these).  Sometimes it takes a good bit of trial and error to find the right combo of meds that works for you-and once you find something that works, it might now always work.  Asthma changes over time-that's part of what makes it such a challenge to manage.  Hang in there-I'm sure you will be able to find what works best for you.  Welcome to the boards!

  • Luna
    LK posted:

    Welcome Luna!    

    I am sorry you are having to deal with this.  I'm in my mid 50s and was diagnosed just over six years ago with adult-onset asthma.  Until about a year ago was still able to ride my horse every day so I understand how hard this is.  I had had a mild chronic cough for years but thought it was just because I was in the dusty environment of the horse barn and also was a therapeutic riding instructor.  My doctor had me take the methacholine challenge and that set off my severe asthma.  Some of my triggers are strong scents, car and diesel exhaust, cold air, humid air, smoke of any kind, weather changes, strong winds, etc.  

    I am glad you have a good team of doctors and keep them informed.  The people here on theses forums are a wonderful group for support and learning how they live with asthma.  They have seen me through many days when I have been struggling with how to keep my life on an even keel with asthma.

    Glad you have a mask and wear it.  I also wear a mask and have taken to wearing it when I am out shopping because by the time I notice someone who has strong perfume or a cigarette smoke odor it has already affected my lungs.  

    It must be hard to get things done when you still have kids at home.  My severe asthma didn't show up until our youngest was off at college.  I understand the tiredness that hits after a flare.  It's like your body is trying to recover and just wants to rest.  Not that rest is something moms ever really get to do! 

    Hope this helps a little bit!

    What kind of horse do you have?  I have a warmblood and used him to show hunters. 

    Hope you are doing better today!  Please let us know how you are.

    I can't tell you how good it feels to hear others stories. I have been feeling so isolated with some of my friends saying I need to get out of the house and do things. Well, parties will have well, perfume people, possible outdoor fire and who knows what else I could be exposed to. No party seems worth it. 

    I have a beautiful dark bay paint and a stout little quarter horse. I am the quarter horse girl from very young…my oldest sister has Arabs and use to do endurance riding, and my other sister has Thoroughbred girl, use to be an exercise rider of race horses and now is settled with the farm life (baby horses lol). 

  • Luna
    Pljohns posted:

    Welcome Luna-I'm sorry you had a need to find us but very glad you did!  You will find the most amazing group here that truly understands what it's like to live with what we all do.  

    I was diagnosed 8 years ago-in my mid 40's with no prior issues at all.  I have severe uncontrolled non allergic persistent asthma with a list of drug allergies a mile long.  Difficult to control is an understatement for me.  i can't use inhalers so all of my meds are nebulizers.

    do you keep any type of journal?  A lot of us here have found that keeping a journal has been a great way for us to determine what triggers us part of the time.  I keep mine electronically and note weather, if I'm not feeling good, sleep and exposure to what few triggers we know about.  Perfume or strong smells in general are a definite trigger for me so I always note "perfume assault" and things like that.  I have about 5 solid years of data, along with peak flow readings that I do every day, but having that much data has allowed me to find trends that I wouldn't have been able to find otherwise-like weather.  In the early days of trying to figure out things, I would take it with me to my doctors appointments so he could see what caused me issues and make suggestions what to do about it.  

    Having a good care team is imperative.  I've had the good, the bad and the ugly when it comes to that and am finally back to the good.  A lot of us have found that we have to be our own advocates and be 100% honest with our docs (I'm sitll working on both of these).  Sometimes it takes a good bit of trial and error to find the right combo of meds that works for you-and once you find something that works, it might now always work.  Asthma changes over time-that's part of what makes it such a challenge to manage.  Hang in there-I'm sure you will be able to find what works best for you.  Welcome to the boards!

    Thank you! I was doing a journal for the first six months but then stopped. I am going to pick it up again. What do you suggest for an electronic journal? I feel I am an good advocate for myself. I have not been able to work because the flare ups are unpredictable. I research and research. I am happy I found this group. 

    Are any of you considered disabled because of uncontrolled asthma?

  • LK

    We also have our kids retired 4-H horses.  A quarter horse and a QH-type grade horse, both are very "aged" !  One is 29 and the other 35.  Both are QH size.  Oh and one other retired show horse, an Oldenburg.  Of all the horses we have ever had, I love the minds of the quarter horses the best!  Very sensible and smart!

    If you ever want to talk "horses" . . . !!    I always love to talk about them!  I started out riding western when I was young and then switched to jumping when I was a teenager.  Sounds like your whole family is into horses.  How nice!  Wow!  An endurance rider and an exercise jockey!  Both very impressive rides!  Does your one sister raise TBs then?  Had one when I was in high school.  What a great horse.  Bet you and your sisters had fun riding together when you were little!

  • Pljohns

    luna-I use simple old MC excel.  i created a spread sheet that has a column for text as well as recording my peak flow and FEV1 numbers.  I use the fill colors to at a glance see triggers, med changes, dr appointments etc.  I like excel instead of a "canned" program that doesn't allow me to manipulate the data based on what I need-like worse months, ave peak flow for the month or making graphs.  It works for me-there are some good apps for smartphones that track things but I lost 2 years worth of data using one of them.  The developer decided not to upgrade any more to match the apple updates so the app no longer worked.  

    I totally agree with you-and probably most of us here would-about the parties.  I keep a mask in my purse that is specifically designed for odors-and it works.  I feel like a freak but am getting to the point of which is better-not being sick for weeks or getting over how I look in it.  

    We're glad your here and please jump in on threads or start new ones-

  • LK
    Luna posted:

    I can't tell you how good it feels to hear others stories. I have been feeling so isolated with some of my friends saying I need to get out of the house and do things. Well, parties will have well, perfume people, possible outdoor fire and who knows what else I could be exposed to. No party seems worth it. 

    My extended family, those who aren't around me on a daily basis to see what I have to contend with, still sometimes suggest that I need to just get out and do more things.  Wish I could!!  They are well-intentioned but just don't realize how even a few breaths of a trigger are enough to sideline me.  I have to consider all the things you mention, perfumed people, smoke, strong scented candles or potpourri inside homes and it just isn't worth it to have to take weeks or months to recover all while breathing poorly.

    I agree – No party is worth that.  Until I found these forums the only people I knew with asthma only needed a few puffs on a rescue inhaler and they were good to go.  It does help so much to know there are others who have the same challenges.

    We will make it!  

  • Shea

    Hi Luna, 

    I am sorry about your recent breathing difficulties triggered by what seems like a not safe work environment– (I have a few moldy building stories too, and live in Florida where humidity can help molds thrive– they really need better regulations!). I have heard of people developing breathing and allergic problems after mold exposures.

    And, I feel ya on the difficulties any breathing disease brings! New sensitivities, a need to change activities and social interactions, a need to advocate and educate others so you can just breathe and be safe! 

    I am disabled by my rare chronic allergic disease that involves my lungs (asthma), heart, and digestive tract called churg-strauss syndrone… I have a lot of fatigue, allergies, and sensitivities. It does make it tough to go out and enjoy things! Plus I have a 7 year old with allergies too (food, dander, and environmental.)

    I carry a purse backpack with a bunch of "tools" for my son and I (inhalers, epipens, asthma masks, benadryl, portable nebulizer, food allergy cards, safe snacks). And I have to do some preliminary checks on places and events before I go (I cannot go to a home with any type of cat or dog that regularly visits or resides on it, as even animal dander carried on others people clothing has triggered asthma attacks, rashes, and can end up flaring my entire disease). The increased number of animals in stores can make it difficult to go to some places (although a lot of places are cracking down on No pets or ESE animals, Service Animals Only), and I cant fly in planes with their current policies regarding animals. Visiting with some friends and family can be more anxiety-provoking (heavy perfumes or people who own lots of animals), so I try to educate and find safe ways to interact. (It is tough because I dont like making special requests or seeming like I am complaining a lot– but I need to breathe and do errands and survive too, so Ive just had to kinda practice a lot– Im still practicing.. I am still learning and irs been 7 years since diagnosis for me). 

    I have worked over the years to find asthma and allergy friendly products and practices for my home and made a sanctuary here and that is really nice. I dont entertain here often because it is important for me to have a safe space here, but I like to meet people out for coffee, walk the outdoor malls, my parents host a lot of family events at their home (which is now no cats or dogs), and some stores I can go in, some with heavy fragrances or sprays on clothings or pet- friendlt I cannot go to.

    It has also taken time to inform friends and family, and set personal and physical boundaries to keep my son and I's health in good order. Also, as others mention, getting hrlp from doctors just to put in a treatment plan or action plan what triggers are and how to avoid them (and what to help for different types of breathing/skin/allergy/viral/bacterial/ irritant inflammations or attacks.) 

    I have really benefitted from sharing stories with others on this forum (especially the daily roll call thread where a few regulars chine on each day)– because every day brings its challenges and it gets mixed in with the other parts of life, so there is a lot of joy and little victories of progress shared too. (Plus it is kind of like a reflective journal in its own right, and a littke social contact eith people who can really empathize). 

  • Luna

    Wow, you are a super Mom! I love pets (I have three dogs and two horses) but I can't understand why they have to go to stores, restaurants and travel with their owners. Two of my dogs don't shed and one has very short hair but I notice at Pilates (which I can do), there is dog hair brought in by owners. You have a tough battle. 

    Perfumes! I wear a mask most times but a quick run in the store can be deadly. I had no idea until I began this illness journey what others like us have to battle every day. I can't thank you enough for sharing your story with me. I don't feel so alone which has been a big battle for me. My friends don't understand and my family does but I don't see them as much as friends.  

     

  • Shea

    Thanks Luna! I am glad your family understands. I moved this past year and friends can be tough to try and explain things to, for sure. Plus I tend to be private about my health to others especially people I am just meeting (partly because I have experiemced a lot of rejection and hurt in the past) but I find it comes out eventually! Using a mask is a great idea, and something I am trying more to get in the habit of doing myself.

  • Luna
    Breatheeasy posted:

    Have they considered any immunosuppressant?

    No but I will research it and present the information to my doctor. Thank you so much!

  • Luna

    Back to my 'normal' pain at a 4, between dull and sharp. Haven't bumped in to any of my triggers. Thank you for asking

  • Luna

    Do others with Asthma have pain? I always have pain but during a flare up it intensifies and almost unbearable. 

  • LK

    Luna,  If you mean pain right along my sternum when my chest feels really tight during a flare, then yes.  Oh, and some pain from GERD if I eat too large a meal before bedtime or something too spicy.

    What has your doctor said about it?

  • Luna

    I deal wth pain every day. I was tested for GERD but I don't have it. Because the cause of my asthma is exposure to mold, which I am very allergic to, a new doctor may do a bronchoscopy to determine if the mold is causing problems. 

  • LK

    Luna, I am so sorry you are in pain every day!    That continual challenge will wear a body down.  I hope you are able with your doctors to determine what is causing this and take steps to at least reduce the pain.

  • K8sMom2002

    Luna, very gentle hugs on the pain … I'm glad your new doctor is taking things seriously and digging deeper. 

    Have you checked out ?

    I'm really glad you've found us … we're here for you. You certainly not alone!

  • MizWheezie

    @ Luna – You are not alone, Friend 

    So sorry that you are experiencing the trials and tribulations of dealing with Asthma, but I hope it helps you to know that we are here for you, and YES, we totally understand…

    I find it interesting that a couple of you mentioned that you were in your 50's when you were diagnosed, because I had asthma attacks in my late teens and early 20's, but then for about 20 years, had absolutely no breathing problems at all…

    Then, I started MENOPAUSE (at age 44), and once I was done with that (at age 50), it seems as if all You-Know-What broke loose – I could feel the symptoms slowly start to creep back, and about a year later, I was back on meds (Advair).

    I mentioned that major change to my Dr. and he said that for some women "hormonal changes" can trigger asthma as well as anything else. 

    Sooo, I'm just sayin' – Unfortunately, it could be a "hormonal" thing as well. 

    But again, welcome to the Forum!

  • Melissa G

    @Luna, have you had another appt with your new dr? Has a bronchoscopy been scheduled? How are you feeling?

  • Luna

    I am still waiting for another CT scan and the bronchoscopy. I am not feeling well. Chest heavy, my voice sounds like a person with a bad cold, and tired. I didn't get my nap yesterday because my son had a water polo game and I slept until 10:30 this morning. No relief from my nebulizer. I may go to the ER or Urgent Care

  • Luna

    I believe I am… I need to use my nebulizer instead of my inhaler I think when it gets this bad. I have an appointment soon and I am going to go over in detail with my doctor so he can help me. I started logging how I feel again after I joined this forum. But like I may have mentioned before, I never feel really good. I use to have so much energy and now I never wake up feeling good.

     

  • LK

    Luna,  Many mornings I have that same problem of not feeling rested when I would wake up in the morning.  Finally figured out that it was because I just wasn't sleeping well because of my asthma making it a struggle to breathe especially at night.  Therefor I wasn't resting at night just working hard to breathe.  Also, there were not many days at all when I felt like I was breathing well.

    Hope your appointment is soon!  If it isn't, it may be worth it to call and see if you can get in earlier.

    Will keep you in my prayers!  Please let us know how you are doing!

  • Luna
    Breatheeasy posted:

    Have you been prescribed oral steroids?

    No. My doctor believes that i will have more side effects than I will benefit from them. 

  • Luna
    LK posted:

    Luna,  Many mornings I have that same problem of not feeling rested when I would wake up in the morning.  Finally figured out that it was because I just wasn't sleeping well because of my asthma making it a struggle to breathe especially at night.  Therefor I wasn't resting at night just working hard to breathe.  Also, there were not many days at all when I felt like I was breathing well.

    Hope your appointment is soon!  If it isn't, it may be worth it to call and see if you can get in earlier.

    Will keep you in my prayers!  Please let us know how you are doing!

    Thank you so much! I really appreciate your concern. I will also be fit for a mouth piece to help my sleep apnea in a month or so. I am hoping this will help my sleep quality. Did you get a CPAP or any other device to help your sleep? How do you feel now? 

  • LK

    Kathleen,  No, I do not have a CPAP or anything else.  I am doing much better since starting Dupixent about three weeks ago.  I hope you are able to sleep better soon!  

  • Luna

    You are so sweet! Thank you for asking. You made my day! Honestly, a little down. I had an appointment with my allergist and I am going to try this new nasal spray he recommended that may stop me from being so sensitive to scents which cause my attacks. I will start that today. I will be fit for a mouth guard soon to help with my sleep apnea and that would be amazing if I could get a good nights rest. 

    I am watching as my world gets very small so I am hoping to get this controlled so I can live again. I'm sure you can relate. I am hosting a baby shower tomorrow for my second oldest nephew and wife, of course 'fragrance free zone,' and I think it will be just the lift I need, seeing lots of my family. 

    How are you? 

  • LK

    Kathleen,   I hear you loud and clear about your world getting smaller at times.  Oh, yes.  For the past year and a half or so, mine shrunk a lot.  It got so I was just worn from dealing with such a long flare and all the things that go with it.

    I hope you have a wonderful time hosting the baby shower!!  Good thinking to let everyone know about scents.

  • Melissa G

    Sending you lots of hugs Kathleen! I hope the nasal spray helps! That is so sweet of you to host the baby shower. 

  • Luna
    LK posted:

    Kathleen,   I hear you loud and clear about your world getting smaller at times.  Oh, yes.  For the past year and a half or so, mine shrunk a lot.  It got so I was just worn from dealing with such a long flare and all the things that go with it.

    I hope you have a wonderful time hosting the baby shower!!  Good thinking to let everyone know about scents.

    Ok, so I am not alone… Thank you for sharing. It is a very strange disease.