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Trouble getting asthma under full control
Asthma & Allergy | Last Active: Sep 8 11:29am | Replies (34)Comment receiving replies
I've talked to so many doctors, I welcome input from people living with asthma.I a 54 y.o. I've had it my whole life. Was not a big issue other than every doctor told my parents not to smoke around me, and they completely ignored that. Few ER visits as a child and lots of resentment, but about it.I've struggled more with asthma as an adult. Have gotten allergy shots for 30 years. Have had a maintenance inhaler, rescue inhaler and nebulizer forever. My allergist does regular pulmonary function tests. Of course, never when I am not feeling well; only on good days. But life was livable.In the past two years, my asthma has exacerbated beyond anything I could imagine. You name it, over the years I've been on every inhaler. About two years ago, I added Dupixent to the regimen, as we saw me going down a slippery slope. I was having surprise asthma attacks where I had no idea the trigger.So for two years or more, I have been on Trelegy, Dupixent, Singulair, Mucinex, Albuterol inhaler, Albuterol nebulizer or Levalbuterol if I can get it and many rounds of prednisone. Things would go well for a bit and then I'd get taken down for like a week or more by severe shortness of breath. Couldn't take a deep breath, couldn't yawn. Got out of breath carrying a laundry basket. Little to no cough. No phlegm or coughing up any junk. Just super tight breathing. Pulse oxygen mid 90sThen last November admitted to hospital for 12 days. Chest xray was clear. Started me on anti-viral, anti-fungal and anti-biotics with steady intravenous steroids. Round the clock DuoNeb and MucoMist. Second day in did a CT with contrast. Both lungs partially collapsed and a black spot that took two more days to diagnose as a bacterial infection of something I inhaled (stenotrophomonas maltophilia). I'm told healthy people inhale this all the time and the body kicks it out.After being released from hospital, got about six weeks before my next bout of shortness of breath. Like, I cannot breathe. Lost 20 pounds over two months because you cannot eat if you cannot breathe. I chose trying to breathe over eating.Switched me to hydrocortisone instead of prednisone and in February, switched me to Tezspire from the Dupixent because Dupixent was not the miracle drug for me that it has been for some. Switched from Trelegy to Breztri just to try something new.Daily Albuterol or Levalbuterol nebulizer, Breztri, mucinex, singulair, fomoterol nebulizer (sp?), albuterol inhaler about every two hours, oral steroid and Tezspire monthly. Recently started taking Mullein tincture to see if it helps.No dairy. No gluten.Back in the hospital in April for two days because I couldn't breathe.I have two pulmonologists and an allergist. All three say, "You're a mystery." All feel they have tried everything. I don't doubt it, but I'm getting really tired of feeling like this. Was just up all last night because around 8pm I felt the tightness come over me.I've had moments of just wanting to give up and stop trying so hard to breathe. But I'm not ready to do that to my family. But I am exhausted and not flattered by being called a mystery.Clean house, hard floors, air purifiers, no scents, recently sanitized air ducts, allergy skin test clear but for crab and some grass I never heard of.Is there a test I haven't had? A medication I haven't tried? Anyone have any suggestions?If you have read this far, thank you for that.
Replies to "I've talked to so many doctors, I welcome input from people living with asthma.I a 54..."
@ogmom
I see the monitor had responded to you with recommendations. I too would asked have you tried going to a mjaor medical provider like Mayo Clinic, Cleveland Clinic. Mayo Clinic has pulmanary specialist and testing that is the latest diagnosis testing and treatments.
I just had a full pulmanary test done that showed some troubling areas but nothing that would have cause my asthma episode I experienced during a Sprint Triathlon swim. It seems to me if something goes wrong I do something or my body does something and cannot get enough air in. Then I start coughing up phlem.
Mayo and I are experimenting on inhalers to try using before race and I am also working with a speech MD. I know speech sounds suspicious but they are specialist in the throat area and also had another test.
My suggestion is see if you can go to a Mayo that is closest to you. I say that because I know Mayo is outstaing in their diagnosis and treatment of asthma conditions.
@ogmom how long you were on anti fungals, anti-virals, etc and did you get to have ID (infec didease) MD consult/ labs done/biopsy of black spot ? It does sound something infectious in nature and would warrant ID MD work up. I can relate to some symptoms - weight loss, not eating , hard to breathe. I was on azoles for 6 months after fungal infection in lungs, also lost close to 50 lbs, shortness of breath (SOB) and yes i was told that usually immunocompitent body fights it back and healthy immune system doesnt let whatever we inhaled to stick around in lungs. I tested negative for hiv (aquired immunodeficiency), but there is always primariry - so you would aslo want to ask allergy/immunoology MD to run all of your IGGs labs.
I was bed ridden good 3 months, multiple steroids, abx and antifungals that didnt work initially, then had labs done on antifungal meds absorption which was very low. ID md switched me to a liquid form and i finally (slowing over few months) started feeling like a human again :). ID MD worked with pulm and allergy md as a team, but she was running the show.
Looking back, it did feel no end in the tunnel - tons of labs, inability to move, body aches and yes loss if hope it will get better. Once you find ID md who is willing to figire it out, it will get better. Infections cam spread, so be careful.
Please ask for heart echo, fluid aroud your heart (from infection) can also give symptoms of SOB
I hope you start feeling better soon!
Lena
Hi Lena -- Thank you for the kind words and information. Yes, Infectious Disease doctors finally diagnosed me after culturing my sputum. They also pinpointed the right antibiotic to kill the bacterial infection.
I'm just shocked at how different my breathing has been in the recent past compared to the first 50+ years. Everything seems to be on the decline. I am definitely making an appt. with Mayo to try to figure things out bc I cannot continue to live like this. It isn't living.
I wish you well on your journey and appreciate you reaching out.
-- Christine (ogmom)
Hi. So sorry to hear of your struggles and I can relate to almost everything. I have been on all of the medications you had mentioned and then some. I was on Xolair for 15 years before it stopped working - and that was the beginning of biologics. I was on Tespire - and had gotten worse from it, but Dupixent has been better for me. Recently, was in hospital - 240mg of Steroids IV for 10 days - which was awful and finally tapered down to a "normal" level - but still on them and don't know if I will get off. Please see a cardiologist - as from all the steroids, you may have some cardiac issues which are now interfering with your recovery. I was also considered a "mystery" as to why my asthma has gotten much worse in the past 2 years +, being an asthmatic since I was a child. Also - Brovana (Arformoterol) - a 12 h - twice a day nebulizer has been helpful (this is long acting Albuterol), along with Budesonide nebulizer every 12 hours, have been helpful, along with daily medications. An old time medication - Theophylline is still around and can be helpful as well. Good luck and hope to hear that you are improving.
Thanks for your response. I did get the Covid Vaccine (which took it's toll on me). It took me 6 weeks to recover (had to increase the steroids after the 2nd shot), and it took me another 6 weeks after I received a booster. I have been very lucky with my family, not permitting me even to go to the supermarket and I was very careful. However, I did get Covid last summer and was sick with after effects for about 6-8 weeks. I was on Paxlovid, too. There is much that is not known about Covid, and it does affect the heart and the lungs as well. I have had lingering Long Covid symptoms and it has taken longer for me to get better from my most recent hospitalization for asthma (in January). Let me know if you have questions. We can privately email, too. Good Luck.
Don't forget the extreme increase in smoke from wildfires. That kind of smoke can (and has) literally traveled across the entire country.
Air Quality Alerts have increased a great deal.
Using an air filter in the house and a mask outside, could significantly reduce these exposures.
Three More Things:
1) My wife had a hair dresser. He had bad asthma. We live in New Jersey. The hairdresser moved to North Carolina. Within a couple of months, his asthma simply disappeared.
2) Some people find that sea air / salt air helps their breathing. I have severe asthma. I was told that if I could walk on a beach an hour daily it would help a lot. Have not had the money to move or make this happen, but passing along what I was told. I have been in sea air a bit...and it does always help some.
3) Might also want to think about reducing your general exposure to chemicals in the house...meaning replacing ammonia and bleach with milder cleaners like distilled white vinegar, etc.
Here's one article about that:
IMPROVING INDOOR AIR QUALITY
Checking and improving your indoor air quality
Do you need to improve your indoor air quality? What do you smell when you walk in your front door? Do you smell air fresheners, dryer sheets? Who knows what chemicals are in these products and how many are harmful to your health?
Who knows what they do when they accumulate in your body? Or what their synergistic effects might be? [“Synergistic” means that 2 + 2 = 5, that when two or more are added together, their total effects might be worse than the sum of either separately.]
https://www.createyourhealthyhome.com/improve-your-indoor-air-quality/index.html
Most important asthma is treated by a Pulmonolgist
The allergy testing is not helping unless it is an allergy to a food or medicine. Most allergists do not test for medications.
You need to use a lung doctor, a pulmonologist.
You need an Infectious Disease Dr. Pulomonologist will work with Infectious Disease Doc. on the breathing issues. Its the Stenotrophomonas that is causing the breathing issues but it is hard to tell the difference in asthma and a bacterial infection. It feels the same and hard to tell which it is.
I am still trying to get over Stenotrophomonas as well. Have had asthma all of my life, been on allergy shots for 52 years. Asthma was totally under control for the last 20 years until I started picking up bacteria. It will not be a mystery to an Infectious Disease Dr. They take sputum samples (spit in a cup) send it off and the lab will tell them what grows out and what meds that will kill it, beat it back or is immune to it. Because of picking up so many bacteria, I have developed BE (Bronchiechitis ) which is where your small air ways widen over time and you can not get rid of mucus. I use an airway clearance vest 2x per day which does seem to help. I can't stress how important it is to find a good if not GREAT Infectious Disease Dr.
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@ogmom I'm sorry to hear what you have been through - people sometimes don't realize how difficult and even life-threatening asthma can be until it happens to them or someone they love.
We have a great support community here, so someone may have an exact suggestion for you. I know you have seen many doctors, but have you been treated in a multi-disciplinary practice with specialists in Intractable Asthma? Mayo Clinics (http://mayocl.in/1mtmR63 ) have Asthma programs in all 3 of their locations, Rochester, MN, Jacksonville, FL and Phoenix, AZ. Other specialty centers include Cleveland Clinic, Massachusetts General/Brigham, Duke University, Ohio State U Wexner Medical Center and U of Texas at Houston. I'm sure there are others as well.
Have you considered a referral to one of these?
Sue