Can’t get Asthma under control
Hi everyone, I figured I’d make a post on here to get other people’s opinions and see what other people went through. I been through about 3 pulmonologist got checked by 2 heart doctors everything checked out good. I finally found a pulmonologist that is taking time out thinking outside the box. I been going through these constant flares ups taking time off of work to regroup. I feel like a lot mucus build up, burning in chest, tightness , heart rate spike so sob can’t even walk. I been getting relive with nebulizer treatments but the window does narrow down if I don’t get away from I guess triggers to let my lungs calm or airway. When I went to the doctor I wasn’t severely winded at the time but felt like shit for week straight and only when I’m going through attach I get increased hr and very winded. She said I’m clear no wheezing so she kinda scratching her head I can tell but said in around about what they are gunna try another nebulizer treatments add on called pumozyme a cf medication bc I have a gene that can turn into that later on with testing for came back negative but I’m guessing she thinking it can still bring out symptoms of inflammation that I’m having. When I’m going throughout this flare it’s almost like I just have to relax to recover or it will get worse I’m not sick or anything either. I did also get scoped for vcd forgot to add.
I’m on
Dupixent 300, Singulair, symbicort, Allegra, hypertonic saline with albuterol daily.
I’m guess with all of this treatment and still having problems they are starting took else where.
I tried trellgy, Symbicort,wixela I went from Tezspire to dupixent I’m still not getting the relief that I deserve. I I’m looking for advice if anybody been through this before thanks.
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Hi. @asthmahelp10. Welcome to Mayo Clinic Connect. I'm a fellow asthmatic, and I'm so sorry to hear about these flares and having trouble getting your asthma under control.
I've had different symptoms than you, but it does become miserable for me when I have a flare that is not going away easily.
I'm tagging some other Mayo Clinic Connect members who have experience with asthma to see if any of them have ideas on getting your flares to quit being a continual problem where you have to take time off work. Perhaps some of them have also had a lot mucus build up, burning in chest, tightness, heart rate spike and getting so short of breath they can’t even walk. Please meet @jenniferhunter @otter2154 @spudmato @mrbill @jc76 @km6 @scoop.
Sounds like you've done a thorough job of going to get medical advice on your flares and that you've tried quite a number of medications, asthmahelp10.
When will you get your new nebulizer treatment?
Yes I tryed a lot of different meds over periods of time. I still had symptoms on them here and there. I still have constant flare ups just lost for words at this point. The best I could describe it everything on paper PFTs and everything look good constant flareups.
@asthmahelp10
First good I.D.
I have had problems with sinuses, throat, bronchial irritation for decades. I was having sinus infections every other week. They did sinus surgery but came back. Then did another surgery which really opened up my sinus draniage. Probelm is that too much and constantly runs down my throat and I cough all the time.
When I do get it all out goes into my bronchial tubes and then I start coughing more. That causes irritation in bronchial which just leads to more coughing.
Mayo did a complete pulmonary test on me. Showed signs of asthma. I also had xrays which showed a partly collasped airway but did not recommend surgery.
So like you I have constant sinus drainage, constant coughing and when doing Sprint Triathlon back several months ago could not get enough air into my lungs like had closed off.
I see you are on a lot of medications. Please have your pulmonologist check to make sure they are not contradicting each other. I did not find a inhaler that worked for me until I got Wixela. It is a generic but contains Fluticasone propionate and salmeterol inhalation powder. I found this really helps my bronchial area calms down, open airway an coughing stops.
My pulmonologist wanted me on a different kind but this came from my PCP so I just use it. It is designed to be taken daily but I only take it when I flare up.
Have you checked into having allergies. They will really affect your asthma, bronchial tubes when exposed to them. You mentioned calming down. When I had my breathing problems at race I was breathing out of a snorkle so mouth breathing. When I took it off and was calming down I was breathing through nose. So I associate part of the problem with mouth breathing AND the stress of breathing during the race.
So would look at reduction stress and axniety with doctors to see if that can help also. I just want you to know I have the same flare ups and they just can't find the exact cause with all my testing. So I try to avoid triggers (stress, anxiety, breathing through mouth, allergies, etc.) to help me not get the triggers. Then if needed I take the Wixela. The medication I take may not be for you but keep trying. And again I see a lot of different medications you are taking. Just have your doctors ensure they are not contradicting each other. You can also asked your pharmacist where you have your medication filled to do same.
Thanks for responding.
I did allergy testing came up grass in dander for dogs. I did allergy testing blood testing Eospniphils the whole asthma panel everything is normal not out of range m. I think that’s what’s kinda of strange there is no markers if that’s the word that explains it. At the moment I’m doing Breo, dupixent , albuterol 2 day nebulizer Air way clearance which can’t get much up but can feel it.
I was reading what you were talking about stress, anxiety. I’m not taking any medication for that I do feel like I’m not stressed out besides going through this. That can cause flares ups? Can you give me little more information on what you are saying?
Thanks again
At one point, in desperation my primary reached out to the clinical pharmacist for help trying to control my asthma. He immediately had 2 suggestions. First, I was on a very low dose beta blocker to control my rapid heartbeat- it shouldn't have been high enough to mess with the beta-agonist used for asthma (Levalbuteroland formoterol are BAs) but in my case it did, that helped but not enough, and he suggested eliminating aspirin and all NSAIDs - that finally made the difference. I'm not sure I understand the connection between anti-inflammatory meds and asthma, but since then my daughter has had the same experience. For me, it means I live with arthritis pain, helped a tiny bit by Tylenol, and some by duloxetine. But I can breathe.
@sueinmn I will definitely pay attention medication like that. What does duloxetine do for you is it suppose to help the asthma?
Asthma since birth and I am 68 years old. It could just be that your body is very specific to medications and you haven't found what works yet. Most of the asthma corticosteroids on the market do not work for me nor do most of the rescue inhalers. I am either allergic or they simply do not do the job. I have tried almost every drug mentioned in the comments and none of them work for me. Also, generics do not work well on me. I went on Flovent back in 1994, I believe it was, and it was a miracle drug for me. The manufacturer quit making it in America back in October 2024. I now get mine from a Canadian company that ships it from New Zealand. Still working for me. I did try the generic Flovent for a couple of months and ended up being a no-go. Most insurance companies will not pay for a Ventalin emergency rescue inhaler so I pay out of pocket myself. I usually will only purchase 2 per year in order to have one on me at all times and one in the house. Good RX can save a lot of money on drugs instead of fighting with the insurance company to get an exception. Sometimes it is worth the fight if it is too expensive though.
I’m glad to see your post because we are all different with our allergies and triggers can change on a whim, just to drive us a little more crazy, affecting our asthma issues. I am not in the medical field, but have suffered from adult onset asthma for the past 35 years. I have a pulmonologist who has treated me after 3 hospitalizations over the past 5 years for pneumonia. However, for the past 10 years I have had the luxury of having a really good allergist/ immunologist, who changes up my maintenance inhaler, depending on the effectiveness at the time. I am generally on allegra and fluticasone nasal spray daily. Since my asthma has improved, I am no longer on a daily maintenance inhaler (asmanex). Most significantly to help with my asthma while in the hospital was the doctor prescribing mucinex. Now, when I get a really bad flare up which results in a sinus infection, I take mucinex twice daily and it prevents pneumonia and hospitalizations for me, (along with a z-pack, an antibiotic). I will be praying for your improvement. I do suggest you see an allergist/immunologist in addition to your pulmonologist.
Duloxetine is for managing chronic pain - not asthma. At first we tested at very low dose to make sure it wouldn't ramp up asthma, and it is ok for me.
Every person needs an asthma treatment that works for their symptoms - my daughters and I all have asthma, and have completely different medications that work.
Your message sounds like how I felt until 2024. I was on trelegy, albuterol, singular etc. I ended up going to the emergency room in 2021. My blood pressure was sky high and I couldn’t breathe. I had a cat scan. I was sent home with antibiotics for pneumonia after the cat scan showed tree in bud opacities. Couple days later I ended up in the hospital because my heart rate and blood pressure went sky high. I couldn’t breathe. Heart was fine after much testing. Another cat scan of lungs showed same thing as first time. Nebulizing several times a day helped along with oxygen while I was there. I went home but still had the same issues until we moved and I saw a new pulmonologist end of 2023. She looked at my history, including ct scans. She was determined to figure out why I had dyspnea and trouble breathing. I always told doctors that my difficulty breathing did not feel like my asthma, but I was also winded with fast heartbeat. My asthma felt under control. Doctors never heard wheezing.
I will always be thankful for the new pulmonologist sending me for more tests and thinking outside the box. I had a new pulmonary function test that showed asthma. I had another ct scan and turned in sputum a couple different times. The ct scan showed the same tree in bud opacities as previous ones. The ct scan dr. found I had bronchiectasis in three parts of my lungs. The sputum took two months for results. They revealed I had a bacteria growing, called mycobacterium avium complex (MAC). It is one of about 175 bacterias that can grow in our lungs. I next saw an infectious disease specialist. I’ve been on three specific antibiotics for MAC 10 months. I use nebulizer twice a day first with albuterol then with 7% saline. I still take singular but am off trelegy as it is not good to take with antibiotics. I should finish the antibiotics in May. At that time I’ll have another pulmonary function test and pulmonologist will figure out best asthma preventative medicine for me to take. I did a lot of research about both broniectesis and MAC-wow! There’s a lot to learn. I also researched dyspnea, talked with gastroenterologist and found out that acid reflux, GERD (I have both), and food going into lungs are among the reasons for it. I’m careful how I eat and sleep knowing this. I have lots of allergies so am seeing an ENT now too. I found support with Mayo for bronchiestesis and asthma.
It’s great you have a new pulmonologist that is thinking outside the box. I hope you have further testing to see if something else is going on with your lungs too.