Trouble getting asthma under full control

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.

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.

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.

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.

@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

@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.

@jc76 I am definitely going to try to get into Mayo. Your story is both inspiring and scary. I am sorry you go through that. But I am happy that you are even able to attempt a triathlon. That can never happen for me. I hope you get to continue your athletics unencumbered by breathing problems. Best wishes.

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.

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.

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.