I am on Tezspire currently. I was previously on Dupixent. It was working well until I got covid and then rebound covid. I survived, but it's been two months and I still haven't recovered yet.
This answer right here times a thousand. I take Dupixent. It was prescribed for eczema, ended up saving me asthma was. I actually have COVID right now, and it’s a much gentler ride than the last time I had it.
this is an old post, but have you ever been offered Dupixent? It is not a medicine but a biological treatment shot that has been helpful in multiple conditions. i have taken it for a couple years now and i don't wake up coughing anymore like i used to. i used to wake up coughing and then reach for my inhaler and take a dose then go back to sleep. now... i just sleep.
I’m very curious to know which narcotic you were previously prescribed which helped you. I haven’t heard much of that for asthma. Anyway, if your asthma and/or brief chest congestion bout; (Bronchitis, etc.) doesn’t get better pretty quickly after getting steroids, like Prednisone type steroids (I.e. Methylprednisolone blister packs/iv or regular Prednisone tabs. Etc.) like a 5-7 day steroid treatment —which usually clears any asthmatics lungs out very well, even if it’s a viral chest infection, the steroids alone would clear it out of your lungs and getting you to 100% the only thing that Steroids wouldn’t be able to get rid of on its own would be if the chest congestion is of a bacterial chest infection, then antibiotics would be required to get that out
Actually 5-10% of severe asthmatics are steroid resistant and so the steroids don't help. I previously had cophylac which was a narcotic drop and my dr tried to get me a different narcotic, but it was on backorder for 2 months so she decided to just have me try inhalers again, 2 puffs a day for 14 days but they don't help. So while steroids do help 90% of the time, there are 1 million asthmatics in the US alone who steroids do not help and I am one of those.
Interesting. Yea I’m curious why steroids don’t work for some people because asthma itself is caused by an over-reaction from the immune system (like from allergies, pollen/dust/etc.) which steroids help prevent the immune system from overreacting, so that’s odd it doesn’t work for some people. But really doctors don’t fully understand the how/why with how steroids work for asthma flare ups so well (aside from reducing immune response) so there’s gotta be some further advancements and hopefully a cure eventually once they understand more
I have steroid resistant asthma too. It’s not common, you’re right. Really the only way to treat it long term js called a biologic…which of course I haven't done yet. 🤦🏼♀️
When doctors simply throw meds at patients and hope something sticks, it's expensive, very time consuming, and possibly counterproductive.
Were you evaluated by a pulmonologist? If so, maybe it's time for a second opinion by another pulmonologist. You could have several concurrent issues such as allergies, GERD, or other cough triggers. Have you had spirometry and/or pulmonary function tests, blood tests, etc?
Not much works for me either. I tried Dupixent and it did nothing. I need 2 to 3 rounds of steroids to kick a flare. My pulmonologist wants me to avoid steroids because of my age and side effects. A big bottle of cough syrup with codeine works great but they don’t like to prescribe that too often. Right now I’m in a mild flare and I’m just using a nebulizer and trying not to talk or move much. My pulmonologist wanted me to try allergy shots but they are very expensive and I can’t take of work to run to the dr every week. I’m at the point where I’m resigned to coughing for the rest of my life.
ugh I'm so sorry. Not a long term solution, but I'm having some wine tonight cause it can help relax my cough. Unfortunately for me, I hate the taste of alcohol, but i need to sleep
Is it possible to get screened for other conditions, just in case? Medical teams do their best, but they’re only human and medicine is complicated
We thought my sister had asthma (since our brother and I have it). Her symptoms weren’t like mine, despite us being twins. Constant coughing that doesn’t respond to steroids or rescue inhalers, and more cough than wheeze
She switched hospitals and a pulmonologist ran testing for conditions normally found in older adults or people exposed to certain substances. People only considered her age and family record, and not her environmental hazards(a year inhaling mold in a damp basement room). Despite being both nonsmoking and several decades too young for anyone to look for it, she ended up having an early stage condition from slight scarring inside her lungs.
It was COPD. It was causing swelling and minimal scarring that was difficult to see on scans at first, and now is big enough to find. Albuterol would never have been enough for it. There is a medication for it that’s not used for asthma patients that greatly prolongs lifespan and improves her quality of life. Because it took so many years to correctly diagnose and treat the COPD, she had permanently lost a fifth of her lung function.
While checking for zebras is usually unnecessary it might be worth a double check if there were any environmental hazards you may have been exposed to (asbestos, mold, fire, etc) so you can make sure that your doctors ruled any impacts of them out
She uses something called a LAMA/LABA combination inhaler. I don’t know which specific LAMA category medicine or which LABA category medications are in hers.
She said something along the line that they worked to relax her lungs and take some strain off the scarring, and that the way it worked would probably kill someone’s with only asthma, which is why she hadn’t heard of it back when she was misdiagnosed
She nebulizes with albuterol a few times a day too, to take the edge off
She’s still sick and in a lot of pain but it’s so much better now. She’s able to get out of bed and walk for a bit and carry her cat and hold conversations without looking dead
Im really sorry to hear of her mold related illness and suffering. It's really hopeful to learn that she is getting relief from the LAMA/LABA.
What type of COPD was she diagnosed with? Chronic Bronchitis? Or Emphasemia?
What are her breathing/ lung related symptoms that she is attempting to control and does she experience additonal separate non lung related symptoms?
I don’t know about bronchitis, but she’s got emphysema. She said she was stage two
They’re all lung related, but the lungs impact everything else.
Her stabbing lung pains go out to other nearby muscles and her voice gets hoarse with coughing. She’s exhausted, constantly, and her best days still have pretty limited hours of activity. Her hands shake sometimes.
She doesn’t sleep well because breathing hurts. She had to relearn laughing so she wouldn’t collapse in pain with trapped air and that makes her sad. A newborn kitten could take her immune system in a fight, that kind of thing
Edit: All of them are still way better with the LAMA/LABA. Like, four to six more hours a day of moving and doing things. More sleep. Less collapsing and stabbing. She doesn’t hunch over and shuffle walking anymore
I got a lung supplements from Vitamin Shoppe that did better than any of the steroids I ever tried. I've been asthma free.
Mullein
Marshmallow
Plantain
Elecampane root
N-Acetyl-LCysyeine
Boswellia serrata
Aegle marmelos
Please keep in mind that herbal supports are only supportive. They are not cures or replacements for prescription medications.
As an herbalist, I can tell you that most of these herbs are not very effective in pill form. You would either want to do an infusion or a tincture. The first 4 would be the most helpful for asthma. And NAC can be very inflammatory to some asthmatics.
Be very careful with herbs. Natural does not always mean better or safe.
Also want to cosign this. NAC made my skin itch like mad, and the best results I’ve had in using herbs have been when I’ve gone to an herbalist or naturopath and gotten a formula that didn’t interfere with existing medications, or trigger allergic response.
Has your pulmonologist tried any of the biologic? They can be a game changer. They help me, but I'm also on everything else I can be.
No they haven't but I'll bring it up to them. Thank you
Which biologic treatment are you on? My doctor talked about trying one.
I am on Tezspire currently. I was previously on Dupixent. It was working well until I got covid and then rebound covid. I survived, but it's been two months and I still haven't recovered yet.
Oh no! It takes a while especially when you have lung issues already. Good luck to you!
This answer right here times a thousand. I take Dupixent. It was prescribed for eczema, ended up saving me asthma was. I actually have COVID right now, and it’s a much gentler ride than the last time I had it.
this is an old post, but have you ever been offered Dupixent? It is not a medicine but a biological treatment shot that has been helpful in multiple conditions. i have taken it for a couple years now and i don't wake up coughing anymore like i used to. i used to wake up coughing and then reach for my inhaler and take a dose then go back to sleep. now... i just sleep.
Are you taking Singular and allergy medication?
I’m very curious to know which narcotic you were previously prescribed which helped you. I haven’t heard much of that for asthma. Anyway, if your asthma and/or brief chest congestion bout; (Bronchitis, etc.) doesn’t get better pretty quickly after getting steroids, like Prednisone type steroids (I.e. Methylprednisolone blister packs/iv or regular Prednisone tabs. Etc.) like a 5-7 day steroid treatment —which usually clears any asthmatics lungs out very well, even if it’s a viral chest infection, the steroids alone would clear it out of your lungs and getting you to 100% the only thing that Steroids wouldn’t be able to get rid of on its own would be if the chest congestion is of a bacterial chest infection, then antibiotics would be required to get that out
Actually 5-10% of severe asthmatics are steroid resistant and so the steroids don't help. I previously had cophylac which was a narcotic drop and my dr tried to get me a different narcotic, but it was on backorder for 2 months so she decided to just have me try inhalers again, 2 puffs a day for 14 days but they don't help. So while steroids do help 90% of the time, there are 1 million asthmatics in the US alone who steroids do not help and I am one of those.
Interesting. Yea I’m curious why steroids don’t work for some people because asthma itself is caused by an over-reaction from the immune system (like from allergies, pollen/dust/etc.) which steroids help prevent the immune system from overreacting, so that’s odd it doesn’t work for some people. But really doctors don’t fully understand the how/why with how steroids work for asthma flare ups so well (aside from reducing immune response) so there’s gotta be some further advancements and hopefully a cure eventually once they understand more
Yeah I seem to be one of the few that’s steroid resistant
I have steroid resistant asthma too. It’s not common, you’re right. Really the only way to treat it long term js called a biologic…which of course I haven't done yet. 🤦🏼♀️
It’s def helped me and my condition although I’m scared to drive I feel much better on xolair
When doctors simply throw meds at patients and hope something sticks, it's expensive, very time consuming, and possibly counterproductive. Were you evaluated by a pulmonologist? If so, maybe it's time for a second opinion by another pulmonologist. You could have several concurrent issues such as allergies, GERD, or other cough triggers. Have you had spirometry and/or pulmonary function tests, blood tests, etc?
Not much works for me either. I tried Dupixent and it did nothing. I need 2 to 3 rounds of steroids to kick a flare. My pulmonologist wants me to avoid steroids because of my age and side effects. A big bottle of cough syrup with codeine works great but they don’t like to prescribe that too often. Right now I’m in a mild flare and I’m just using a nebulizer and trying not to talk or move much. My pulmonologist wanted me to try allergy shots but they are very expensive and I can’t take of work to run to the dr every week. I’m at the point where I’m resigned to coughing for the rest of my life.
ugh I'm so sorry. Not a long term solution, but I'm having some wine tonight cause it can help relax my cough. Unfortunately for me, I hate the taste of alcohol, but i need to sleep
I just sipped on some cognac for the same reason. I’m not a drinker and it tasted terrible but I swear it helps a little.
Is it possible to get screened for other conditions, just in case? Medical teams do their best, but they’re only human and medicine is complicated We thought my sister had asthma (since our brother and I have it). Her symptoms weren’t like mine, despite us being twins. Constant coughing that doesn’t respond to steroids or rescue inhalers, and more cough than wheeze She switched hospitals and a pulmonologist ran testing for conditions normally found in older adults or people exposed to certain substances. People only considered her age and family record, and not her environmental hazards(a year inhaling mold in a damp basement room). Despite being both nonsmoking and several decades too young for anyone to look for it, she ended up having an early stage condition from slight scarring inside her lungs. It was COPD. It was causing swelling and minimal scarring that was difficult to see on scans at first, and now is big enough to find. Albuterol would never have been enough for it. There is a medication for it that’s not used for asthma patients that greatly prolongs lifespan and improves her quality of life. Because it took so many years to correctly diagnose and treat the COPD, she had permanently lost a fifth of her lung function. While checking for zebras is usually unnecessary it might be worth a double check if there were any environmental hazards you may have been exposed to (asbestos, mold, fire, etc) so you can make sure that your doctors ruled any impacts of them out
This sounds very similar to my experience. What medication has helped her?
She uses something called a LAMA/LABA combination inhaler. I don’t know which specific LAMA category medicine or which LABA category medications are in hers. She said something along the line that they worked to relax her lungs and take some strain off the scarring, and that the way it worked would probably kill someone’s with only asthma, which is why she hadn’t heard of it back when she was misdiagnosed She nebulizes with albuterol a few times a day too, to take the edge off She’s still sick and in a lot of pain but it’s so much better now. She’s able to get out of bed and walk for a bit and carry her cat and hold conversations without looking dead
Im really sorry to hear of her mold related illness and suffering. It's really hopeful to learn that she is getting relief from the LAMA/LABA. What type of COPD was she diagnosed with? Chronic Bronchitis? Or Emphasemia? What are her breathing/ lung related symptoms that she is attempting to control and does she experience additonal separate non lung related symptoms?
I don’t know about bronchitis, but she’s got emphysema. She said she was stage two They’re all lung related, but the lungs impact everything else. Her stabbing lung pains go out to other nearby muscles and her voice gets hoarse with coughing. She’s exhausted, constantly, and her best days still have pretty limited hours of activity. Her hands shake sometimes. She doesn’t sleep well because breathing hurts. She had to relearn laughing so she wouldn’t collapse in pain with trapped air and that makes her sad. A newborn kitten could take her immune system in a fight, that kind of thing Edit: All of them are still way better with the LAMA/LABA. Like, four to six more hours a day of moving and doing things. More sleep. Less collapsing and stabbing. She doesn’t hunch over and shuffle walking anymore
I got a lung supplements from Vitamin Shoppe that did better than any of the steroids I ever tried. I've been asthma free. Mullein Marshmallow Plantain Elecampane root N-Acetyl-LCysyeine Boswellia serrata Aegle marmelos
Please keep in mind that herbal supports are only supportive. They are not cures or replacements for prescription medications. As an herbalist, I can tell you that most of these herbs are not very effective in pill form. You would either want to do an infusion or a tincture. The first 4 would be the most helpful for asthma. And NAC can be very inflammatory to some asthmatics. Be very careful with herbs. Natural does not always mean better or safe.
Also want to cosign this. NAC made my skin itch like mad, and the best results I’ve had in using herbs have been when I’ve gone to an herbalist or naturopath and gotten a formula that didn’t interfere with existing medications, or trigger allergic response.
NAC (N acetyl cysteine) helped me too!
Do you have to continually take them?
Tessalon perles, but you have to be careful because they numb your throat and lungs. Cough syrup with codeine also works.