Can’t get Asthma under control

Posted by asthmahelp10 @asthmahelp10, Feb 10 2:53pm

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.

Interested in more discussions like this? Go to the Asthma & Allergy Support Group.

@ccanz

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.

Jump to this post

Thanks for commenting. I also did forget to add I do have bronchiectasis. I also did do sputum sample came back for Rare Methicillin Resistant Staphylococcus aureus my doctor didn’t seem too concerned about it. I did Google. It comes up as Mrsa which can’t be that good in your lungs. I’m guessing.

REPLY
@asthmahelp10

Thanks for commenting. I also did forget to add I do have bronchiectasis. I also did do sputum sample came back for Rare Methicillin Resistant Staphylococcus aureus my doctor didn’t seem too concerned about it. I did Google. It comes up as Mrsa which can’t be that good in your lungs. I’m guessing.

Jump to this post

Good you know you have it. I can’t imagine having that in your lungs. I hope all is figured out for you and you feel better.

REPLY
Please sign in or register to post a reply.