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Asthma changes over time

Just curious-how has your asthma changed over the time you've had it?  We all now it is a disease that does change, but how has yours changed and what have you had to do to accommodate those changes?

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  • K8sMom2002

    What a great question, Lynn! I was thinking of this as I read through @Amma's recent post about her .

    I didn't even know I had asthma for many years — I knew I had "coughing spells." I knew I couldn't run because my lungs would "act up." I knew that a cold would leave me coughing for weeks.

    But it wasn't until a long bout of bronchitis that I was properly diagnosed. That inhaler sure did help! I forgot about taking my inhaler with me, and then the next summer, when the temps rose and heat triggered an asthma attack, I knew what it was. 

    My asthma has gone from an infrequent visitor to a more commonly seen sidekick … but my education and awareness about asthma have gone up, too. That more than balances things. 

    I'd love to hear how other people's asthma has changed over the years — and how their asthma skills have changed, too!

  • LK

    Great topic Lynn!

    I'm kind of like you, Cynthia.  I had a chronic cough that I didn't know was asthma for some years as an adult and then it became severe persistent asthma.  Went from no inhaler or meds to several asthma meds and inhalers.  Change of lifestyle encompassed reducing my exposure to triggers, taking meds on schedule, learning about severe asthma, finding AAFA website and the forums which have taught me so much about life with asthma.

  • Emelina

    Great question Lynn! My asthma started in childhood with eib and long bouts of bronchitis after any cold. In my 20s it was eib and occasional flares with viruses and spring allergies; I could beat it back with intermittent Flovent and as needed albuterol. Only in the last 6 months has it really ramped up and required max therapy short of a biologic. My team hopes this is just a viral exacerbation + gerd (and I hope they are right) but I’ve had lots of URIs before, but never anything as out of control and severe like this.🤞

  • Breatheeasy

    I was diagnosed In 2017-2018 Dec -Jan something like that at 30yrs. I have no idea when it began. I might have had exercise induced from 12 yrs of age but did not know. When I was diagnosed it was a small flare-up. And the plan was to use both my anti-inflammatory and albuterol inhalers until it calms down. It did calm down as soon as I started using albuterol but I didn’t know that I was supposed to use both the inhalers as I did not discuss it with my pharmacist. 

    Later – it was August of last year – loads of issues hit me in life(not health related issues) I had a very bad flare up asthma wise. my inhaler did not work anymore and also started causing broncospasms. I was told that the anti-inflammatory is also a must use inhaler. So I start using my anti-inflammatory and no albuterol. It works. Until it starts causing some side effects. I go back to my doc. Who says I should get off of the anti-inflammatory. And use Singulair.

    After that things are ok with intermittent issues so I go to another pulmo. He starts me on Advair and a dose of oral steroids for two weeks. Things improve and I am back to myself. I decide to go make use of this. I like an idiot go swimming all the while worrying that the chlorine was going to set my asthma off again. And I have an attack that night. I use my inhaler that helps. After that there’s intermittent tightness. And the inhalers start causing issues again with broncospasms. So I go back and started on oral steroids again with an antibiotic. Now I have a mild sinus infection. Which my doc thinks is causing my asthma to flare up. I must go back and probably get another antibiotic.

  • Shea

    My asthma has changed over time from before it was asthma (allergies only) to after it became churg-strauss syndrome in which eosinophillic asthma is one of tge many issues. It started as animal dander allergies (severe) and environmental to molds pollens (less severe) . Singulair seemed to stop the allergy living with animals at first but in tryth made everything worse–  I regard it as a bad med by making it into a worse disease over the long term by suppressing my bodys ability to remove the allergens without treating the eosinophil and allergic inflammation from happening internally and making one think they didnt need to practice avoidance due to symtoms suppression. It turned to eosinophillic inflammation and asthma and worsening allergic disease. Avoidance helped along with getting off singulair and having to use high dose steroids and other medications to get severe eosinophilia under control (eosinophils can affect more than lungs in many diseases it gets into tissues and in my case caused a heart attack of which permanent damage occurred– it wasnt until the heart attack that CSS was diagnosed and doctors started to understand the role animal dander exposure and singulair played– some doctors wouldnt even try to understand but I did find an expert, very goid allergist /immunologist did come through for me and help me explain to family my need for avoidance of animal dander.

    Overall, steroids make symptoms better/ inflamnation lower when on high doses, coming off is always a failure if the allergic triggers remain, so avoidance was important for me, especially because my reactions became more severe and included second hand snimal dander exposure. Steroid dependence makes everything harder– making it difficult to assess sensitivity because it changes based on how much steroid one is on. Fatigue makes everything harder and is a symptom of prednisone tapers/withdrawal. A messed up cortisol cycle and wacky blood sugar are also difficult to deal with. Emotionally it is difficult to bounce up and down on steroids. Symptoms and side effects are all mixed together after a while.

    But I am alive and breathing. So that is good. My ER visits are less, my avoidance strategies are better and to thank for a lot of my progress including keeping eosinophil levels lower and having big attacks less. Stabilizing doses of prednisone also help– much better than trying to push off steroids before symptoms are gone because of fear of long-term use. The greater fear for me is pushing off steroids and running back into triggers and needing to go up high again– I do not like bouncing up and down on prednisone.

    So over time for me I have focused on stability and ability to complete ADLs for me and be a caretaker to my son and have made that priority number one. I dont mind exposing myself to less through lifestyle. I used to only go out for an hour or 2 a day tops and only to environments without animal dander, strong perfunes, smoke, chemicals, or other triggers. Now I have more social support and safe places so I can manage more activities and events through modifications others make to accomodate me but still avoud all of the above triggers. The disease itself is much better than 7 years ago and I think it involves complex factors, lifestyle changes, and effort that is ongoing. I also have worked hard to make my physical home a sancuary and do not typically entertain guests here unless I know they do not own animals so that helps not having even secondhand animal dander in home environment, as it is hard to get rid of once it gets on and can get into homes without animals to a significant level if more pet owners visit (shoes, bags, clothes are all reservoirs).. 

  • Deborah Bartlett

    To be quite honest, my asthma has gotten worse over time. I am doing everything as I am instructed. With the COPD added in…it is tough at times. Slowly but surely, we will find out what else can be done to help me. Physical exam is coming up. Bloodwork as well. Possibly, testing for eosinophilic. We've tried all combinations of meds. Maybe biologics will be up next….

  • Pljohns

    It’s been interesting to see everyone’s response-my asthma is an odd type and over the years, I’ve gone from being able to use inhalers at first to having issues with them and having to change over completely to a neb.  I’ve been in the hospital 4 times because I didn’t slow down and take care of myself but I’m working on that-i’m A work in progress.  Thankfully I think mine has stayed about the same-there are more and more meds that I can’t take but so far, the original med is holding strong.

  • Breatheeasy
    Pljohns posted:

    It’s been interesting to see everyone’s response-my asthma is an odd type and over the years, I’ve gone from being able to use inhalers at first to having issues with them and having to change over completely to a neb.  I’ve been in the hospital 4 times because I didn’t slow down and take care of myself but I’m working on that-i’m A work in progress.  Thankfully I think mine has stayed about the same-there are more and more meds that I can’t take but so far, the original med is holding strong.

    Totally, I don’t understand why my meds keep acting strange too. 

    Sometimes I wonder if there’s something else going on when the meds cause issues. Or maybe as time goes by the meds help less. Do the inhalers work when you try a new medicine. A different inhaled drug other than the ones you frequently use?

  • Pljohns

    All we have been able to figure out is the HFA propellent and my lungs don't like each other-not in ANY form of inhaler.  The meds by themselves in a neb work great but try to use them in an inhaler and no way. Meds have worked backwards on me most of my life-the last time I looked, I'm up to about 18 meds I can't take at all-there are currently no asthma meds on the market that I haven't tried and had issues with-some were life threatening issues-that's why I use a COPD med off label-its the only thing that worked-sort of-that I didn't have problems with.