After 3.5 years on Symbicort I started coughing up some serious blood. Once I switched to Spiriva, it stopped. The blood was due to a serious aspergillus infection that I blame on Symbicort. I do not have asthma but I have cavitary disease along with bronc., copd, scar tissue.
The cavity allows bacteria to collect and the steroid make it grow. My surgical attempt to resection was a failure 4 years ago so I have to live with it. My quality of life is better with spirivia.
In keeping with this discussion, has anyone asked the Denver or Mayo doctors about the use of anticholinergics (sp?) with respect to bronchiectasis and making mucus harder to expel? Trelegy and spiriva (I think) both have some anticholinergic effect. Logically it has always seemed to me that drying up the mucus was not a good idea but I have no clue about this. I have an autoimmune disease and have to be on steroids (low dose). I also have asthma. Some of us need steroids for various reasons and have managed to survive for many years!! My assumption is there are various theories about these drugs none of which are the final word. For my allergies and post nasal drip I use a nasal spray Azelastine of which very little is absorbed by the body (allegedly) combined with a spray of a steroid like flonase. These are complicated issues.
Thanks Sue...good to know. I had heard that LABA's should not be taken without a steroid but I don't know if that continues to be true. The LAMA is the anticholinergic as far as I understand it and you are saying that that has not caused any drying up so thanks for that info.
Just to clarify...you are on Symbicort (sp?) right? and that is a LABA plus a steroid I think (formoterol and budesonide ). It's the LAMA that I was more concerned with as it is an anticholinergic (sp?) and Trelegy has the steroid, the LAMA and a LABA....oh dear! I'm on Breo which is a LABA and a steroid (vilanterol and fluticasone furoate) but how it exactly differs from Symbicort is beyond my pay grade. I think they are similar though.
Just to clarify...you are on Symbicort (sp?) right? and that is a LABA plus a steroid I think (formoterol and budesonide ). It's the LAMA that I was more concerned with as it is an anticholinergic (sp?) and Trelegy has the steroid, the LAMA and a LABA....oh dear! I'm on Breo which is a LABA and a steroid (vilanterol and fluticasone furoate) but how it exactly differs from Symbicort is beyond my pay grade. I think they are similar though.
Inserting some thoughts even though I'm not SueinMN !
I am currently on symbicort; before now I was on flovent (straight fluticasone) with albuterol as needed. Comparing the two steroids is not straightforward. Perhaps a chemist can explain it. When I google searched budesonide vs fluticasone and infection rates, I found studies that fluticasone caused slightly more infection rates than budesonide containing meds in the COPD/asthma population (?) If I can dig up the study I will post it here.
At one point I tried spiriva and my breathing felt very good but it seemed more of an effort to clear my lungs so I stopped it. It's really a balancing act figuring it out. One size does not fit all.
Inserting some thoughts even though I'm not SueinMN !
I am currently on symbicort; before now I was on flovent (straight fluticasone) with albuterol as needed. Comparing the two steroids is not straightforward. Perhaps a chemist can explain it. When I google searched budesonide vs fluticasone and infection rates, I found studies that fluticasone caused slightly more infection rates than budesonide containing meds in the COPD/asthma population (?) If I can dig up the study I will post it here.
At one point I tried spiriva and my breathing felt very good but it seemed more of an effort to clear my lungs so I stopped it. It's really a balancing act figuring it out. One size does not fit all.
Interesting observation about the budosenide. My ID doc says that is why he okays budosenide nebs for MAC patients when a steroid is required.
I am waiting to see if my insurance will put Anoro on the formulary for asthma or bronchiectasis in the new year - now it is limited to COPD, which I don't have. Then I can reduce my risk even more - if it works as well as the Symbicort.
Just a Happy Hour observation - did you know inhaling the salt from the rim of your margarita glass works almost as well as a saline neb to bring up mucus? Of course, it makes everyone else at the table edge away from you as if you have the plague!🤣
Inserting some thoughts even though I'm not SueinMN !
I am currently on symbicort; before now I was on flovent (straight fluticasone) with albuterol as needed. Comparing the two steroids is not straightforward. Perhaps a chemist can explain it. When I google searched budesonide vs fluticasone and infection rates, I found studies that fluticasone caused slightly more infection rates than budesonide containing meds in the COPD/asthma population (?) If I can dig up the study I will post it here.
At one point I tried spiriva and my breathing felt very good but it seemed more of an effort to clear my lungs so I stopped it. It's really a balancing act figuring it out. One size does not fit all.
Renee & Rick (@rstel7272) - Yes, inhaled steroids are a risk if you have MAC, but there are some other choices.
If you have declining lung function, and part of the problem is asthma or COPD, there are inhalers that will help your lung function in the way @tumanic described, but without the steroid included in Trelegy (which may complicate antibiotic treatment.)
They are called LABA, Long Acting Beta Agonists and LAMA, long Acting Muscarinic Agonists. These help open the airways for 12-24 hours with a single dose. Anoro is one such medication, but I think there are a few others.
These are different SABA, Short Acting Beta Agonists like from albuterol and levalbuterol, which are meant to open the airways temporarily and may need to be repeated many times a day.
The long-acting treatments were developed for COPD, but are becoming standards of care for many other lung conditions because a single dose is effective all day (better compliance, less burden on the patient) side effects are less than either nebulized or inhaled SABA's, and research is showing a lessening of lung infections.
What did it mean for me?
I was able to completely stop levalbuterol nebs unless I have an exacerbation. And with my lungs always "open" I don't have to time airway clearance to coordinate with taking meds, I do it when convenient. Wonderful time & labor savings!
My breathing is better, and after a few weeks (to get enough in my body) my chronic chest heaviness/chest pain was gone. I have only needed my rescue inhaler a handful of times this year!
Finally, my exacerbations are down to one in the past 18 months, as opposed to 2-3 per year before.
So - it is worth further discussion with your doc to find one of the many inhalers now available that can work for you!
Sue
Sue, I have a question, I too take Annoro but opted to take it in the evening because I couldn’t sleep at night because of accumulation of mucus. I take it around 7:30-8:00pm. I love the idea of taking it during the day so possibly no need to nebulize or rescue inhaler. Now we know can only do Annoro once every 24 hrs, so do you take anything in the evening? Or does your one dose of the Annoro last you the full 24hrs or close to it? When I first started it about 3 years ago it really lasted 12-16 hrs. But now only seems to last 8-10hrs maximum, any thoughts or advice? Your thoughts and advice are always appreciated. Thank-you.
Sue, I have a question, I too take Annoro but opted to take it in the evening because I couldn’t sleep at night because of accumulation of mucus. I take it around 7:30-8:00pm. I love the idea of taking it during the day so possibly no need to nebulize or rescue inhaler. Now we know can only do Annoro once every 24 hrs, so do you take anything in the evening? Or does your one dose of the Annoro last you the full 24hrs or close to it? When I first started it about 3 years ago it really lasted 12-16 hrs. But now only seems to last 8-10hrs maximum, any thoughts or advice? Your thoughts and advice are always appreciated. Thank-you.
I really don't have an answer for you, since I take a different medication, Symbicort. I do know that when my asthma is "acting up" I must use it 2-4 times a day, but many times I only use it in the morning. This plan was worked out with my pulmonologist.
I would suggest that if you are finding a medication lass helpful than in the past, you discuss it with your doctor. There my be something else that would be appropriate for you. Have you talked to the prescribing doc about the lessening effectiveness?
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After 3.5 years on Symbicort I started coughing up some serious blood. Once I switched to Spiriva, it stopped. The blood was due to a serious aspergillus infection that I blame on Symbicort. I do not have asthma but I have cavitary disease along with bronc., copd, scar tissue.
The cavity allows bacteria to collect and the steroid make it grow. My surgical attempt to resection was a failure 4 years ago so I have to live with it. My quality of life is better with spirivia.
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1 ReactionThe LABA/LAMA has not reduced my sputum production in the past years and a half. I still cough up crud all day long.
Sue
Thanks Sue...good to know. I had heard that LABA's should not be taken without a steroid but I don't know if that continues to be true. The LAMA is the anticholinergic as far as I understand it and you are saying that that has not caused any drying up so thanks for that info.
Just to clarify...you are on Symbicort (sp?) right? and that is a LABA plus a steroid I think (formoterol and budesonide ). It's the LAMA that I was more concerned with as it is an anticholinergic (sp?) and Trelegy has the steroid, the LAMA and a LABA....oh dear! I'm on Breo which is a LABA and a steroid (vilanterol and fluticasone furoate) but how it exactly differs from Symbicort is beyond my pay grade. I think they are similar though.
Inserting some thoughts even though I'm not SueinMN !
I am currently on symbicort; before now I was on flovent (straight fluticasone) with albuterol as needed. Comparing the two steroids is not straightforward. Perhaps a chemist can explain it. When I google searched budesonide vs fluticasone and infection rates, I found studies that fluticasone caused slightly more infection rates than budesonide containing meds in the COPD/asthma population (?) If I can dig up the study I will post it here.
At one point I tried spiriva and my breathing felt very good but it seemed more of an effort to clear my lungs so I stopped it. It's really a balancing act figuring it out. One size does not fit all.
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3 ReactionsInteresting observation about the budosenide. My ID doc says that is why he okays budosenide nebs for MAC patients when a steroid is required.
I am waiting to see if my insurance will put Anoro on the formulary for asthma or bronchiectasis in the new year - now it is limited to COPD, which I don't have. Then I can reduce my risk even more - if it works as well as the Symbicort.
Just a Happy Hour observation - did you know inhaling the salt from the rim of your margarita glass works almost as well as a saline neb to bring up mucus? Of course, it makes everyone else at the table edge away from you as if you have the plague!🤣
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5 ReactionsI'm making a note right now to ask about switching to Symbicort from Breo at my next appointment....thanks
Yes, a true balancing act. A fungal infection development was my wildcard
Sue, I have a question, I too take Annoro but opted to take it in the evening because I couldn’t sleep at night because of accumulation of mucus. I take it around 7:30-8:00pm. I love the idea of taking it during the day so possibly no need to nebulize or rescue inhaler. Now we know can only do Annoro once every 24 hrs, so do you take anything in the evening? Or does your one dose of the Annoro last you the full 24hrs or close to it? When I first started it about 3 years ago it really lasted 12-16 hrs. But now only seems to last 8-10hrs maximum, any thoughts or advice? Your thoughts and advice are always appreciated. Thank-you.
I really don't have an answer for you, since I take a different medication, Symbicort. I do know that when my asthma is "acting up" I must use it 2-4 times a day, but many times I only use it in the morning. This plan was worked out with my pulmonologist.
I would suggest that if you are finding a medication lass helpful than in the past, you discuss it with your doctor. There my be something else that would be appropriate for you. Have you talked to the prescribing doc about the lessening effectiveness?