Brinsupri follow-up

Posted by scoop @scoop, Sep 29 12:21pm

It seems a bunch of us have started Brinsupri. Let's use this thread for discussion. If you are taking Brinsupri have you noticed anything different, including changes to bronchiectasis or side effects? How long have you been on it?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Profile picture for spider109 @spider109

@scoop hey scoop glad you are feeling better. I had a similar issue. I’ve been on Brinsupri since 9/5. Did real well until 10/16. That’s the day I got my Covid & Flu vaccination. On 10/18 I took a trip to my local hospital ER, with more sob, body aches, fatigue, and more phlegm, and chest tightness. I had blood work, chest x-ray done and it was determined that my sodium in blood was low 126, (normal is 136-146) its a condition known as Hyponatremia. Now I’ve had this before, But I’m convinced that the Covid or flu vaccine triggered this condition, so is my pcp. Just 2-3 weeks prior my Sodium levels were 134-135, and had been that for the previous 3 months. I’ve been told previously that hyponatremia is common in people with lung disease. Nevertheless the treatment is fluid restriction and salt tablets, and furosemide. I know that there is alot of controversy over the Covid vaccine, in fact Florida is really initiating anti vaccine rhetoric, although it is optional to residents, and to me it seems evidence appears to be growing that maybe this vaccine isn’t as safe & effective as we’ve been told. Anyway it leaves us with an even tougher decision!! Do we get the vaccine or not??? Thank you for listening sorry so long. Also I did file a complaint with the FDA, my pcp says nothing will be done with it, it’s just another data point for them.

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@spider109 Did the ED treat you for a BE flare in addition to the Hyponatremia?

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Profile picture for scoop @scoop

@spider109 Did the ED treat you for a BE flare in addition to the Hyponatremia?

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@scoop No scoop they did not. I really hate to say this but the small town hospitals, don’t have the knowledge or the expertise & experiences to try to differentiate between possible different diagnosis for problems with similar symptoms. My experience time & time again is they see a positive test results for one particular diagnosis and tunnel vision takes over.

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Profile picture for scoop @scoop

@cwal @irenea8 I'll do my best to answer these questions. Pulmonary treats the patient and not only the sputum culture. In other words, increased cough, increased and darkening sputum feeling crappy for well over a week, all these symptoms drive the decision to treat. My sputum culture showed: excellent specimen quality (no epithelial cells), increased polys means strong inflammatory response (lots of neutrophils), rare mixed bacteria (nothing dominant), no specific pathogen isolated, low level infection likely. Also waiting for tests on fungi and NTM (which take longer).

Could it be a viral thing? Yes. Often exacerbations start out as triggered by some virus. Then, it progresses to bacterial due to weaknesses in my lungs (bronchiectasis). Sometimes I can fight it off and sometimes not.

Do you think the Brinsupri caused the issue? I sort of doubt it. If anything the brinsupri helped as recovered more quickly than usual and did not get as sick.

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@scoop
Still wonder since the most common side effect of Brinsupri was upper res infections. None of us wants to think it is causing side effects so we may talk ourselves out of it, but we also need to remember that it was not tested on people with MAC or Pseudo etc. I guess only time will tell for sure.

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Profile picture for spider109 @spider109

@scoop hey scoop glad you are feeling better. I had a similar issue. I’ve been on Brinsupri since 9/5. Did real well until 10/16. That’s the day I got my Covid & Flu vaccination. On 10/18 I took a trip to my local hospital ER, with more sob, body aches, fatigue, and more phlegm, and chest tightness. I had blood work, chest x-ray done and it was determined that my sodium in blood was low 126, (normal is 136-146) its a condition known as Hyponatremia. Now I’ve had this before, But I’m convinced that the Covid or flu vaccine triggered this condition, so is my pcp. Just 2-3 weeks prior my Sodium levels were 134-135, and had been that for the previous 3 months. I’ve been told previously that hyponatremia is common in people with lung disease. Nevertheless the treatment is fluid restriction and salt tablets, and furosemide. I know that there is alot of controversy over the Covid vaccine, in fact Florida is really initiating anti vaccine rhetoric, although it is optional to residents, and to me it seems evidence appears to be growing that maybe this vaccine isn’t as safe & effective as we’ve been told. Anyway it leaves us with an even tougher decision!! Do we get the vaccine or not??? Thank you for listening sorry so long. Also I did file a complaint with the FDA, my pcp says nothing will be done with it, it’s just another data point for them.

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@spider109
You said: On 10/18 I took a trip to my local hospital ER, with more sob, body aches, fatigue, and more phlegm, and chest tightness. I had blood work, chest x-ray done and it was determined that my sodium in blood was low 126, (normal is 136-146) its a condition known as Hyponatremia.

But those are not the usual symptoms of hyponatremia. So did you have something else going on as well as hyponatremia?

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They did do a EKG, Troponin I for cardiac reasons and the ER Dr. stated that my heart was fine, that it is probably the onset of hyponatremia, although not in the danger zone yet. He did say that they could run some other tests, but since I have a history of hyponatremia at this point that’s what he believes it to be.

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Profile picture for irenea8 @irenea8

Wondering out of those taking Brinsupri that have noticed decreased sputum amount and a lightening of color, have you also noticed feeling better? Some say breathing better? I still wonder how it is going to work for someone like me with chronic infection/exacerbation daily.

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@irenea8
I have been on Brinsupri 25 mg for 2 months. Prior to taking it, I had 3 respiratory infections this year. My mucus production and cough have definitely lessened. I still do airway clearance twice a day.

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I started taking Brinsupri 25mg 14 days ago and have not noticed much improvement. I’ve had a few hopeful days but no consistency yet. Mucus is slightly less but still pretty funky looking. My biggest concern is whether I’ll have an improvement in my breathing. I’m 78 years old and have had lung issues all my life but as I am aging, my lung function is worsening. I remain hopeful. This is a good way to learn patience.

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Profile picture for lmanells @lmanells

@irenea8
I have been on Brinsupri 25 mg for 2 months. Prior to taking it, I had 3 respiratory infections this year. My mucus production and cough have definitely lessened. I still do airway clearance twice a day.

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@lmanells Glad to hear you find that your mucus production and cough have lessened. I am curious...... did you experience full exacerbations prior to beginning the Brinsupri? Two of the pulmonologists I had visits with this week both indicated Brinsupri is geared towards helping to reverse exacerbations for those having them. Were you given the Brinsupri with exacerbations as the reason for starting it???
For me I feel my biggest problem is the mucus production, I haven't had an exacerbation, as yet and hope never.
Barbara

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Profile picture for blm1007blm1007 @blm1007blm1007

@lmanells Glad to hear you find that your mucus production and cough have lessened. I am curious...... did you experience full exacerbations prior to beginning the Brinsupri? Two of the pulmonologists I had visits with this week both indicated Brinsupri is geared towards helping to reverse exacerbations for those having them. Were you given the Brinsupri with exacerbations as the reason for starting it???
For me I feel my biggest problem is the mucus production, I haven't had an exacerbation, as yet and hope never.
Barbara

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@blm1007blm1007 I have several lung conditions but the bronchiectasis is apparently my biggest problem. I have flare ups from time to time but I think my pulmonologist prescribed Brinsupri hoping that it might positively affect several aspects of my disease including mucus reduction, less fatigue, and better breathing, which I consider my most sought after improvement. My coughing has subsided quite a bit though I still have coughing fits but not as many. Thanks for your response. Dan

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Profile picture for scoop @scoop

@cwal @irenea8 I'll do my best to answer these questions. Pulmonary treats the patient and not only the sputum culture. In other words, increased cough, increased and darkening sputum feeling crappy for well over a week, all these symptoms drive the decision to treat. My sputum culture showed: excellent specimen quality (no epithelial cells), increased polys means strong inflammatory response (lots of neutrophils), rare mixed bacteria (nothing dominant), no specific pathogen isolated, low level infection likely. Also waiting for tests on fungi and NTM (which take longer).

Could it be a viral thing? Yes. Often exacerbations start out as triggered by some virus. Then, it progresses to bacterial due to weaknesses in my lungs (bronchiectasis). Sometimes I can fight it off and sometimes not.

Do you think the Brinsupri caused the issue? I sort of doubt it. If anything the brinsupri helped as recovered more quickly than usual and did not get as sick.

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@scoop Scoop- I had my visits with the two pulmonologists and showed them and told them what I was bringing up...the soft yellow/green tint pieces. Both said to me....yes they are mucus plugs.
AI info said....for what it is worth: "Yes, mucus can change from soft and pliable to hardened and even solidify over time in the lungs. This hardening can occur due to a variety of factors that cause mucus to become thick, stagnant, and dehydrated, such as infections, certain medical conditions like cystic fibrosis, and dehydration. In severe cases, this can lead to the formation of hardened "casts" that block airways."
My Pulmonary Function Test, thankfully, continues to be good. Lower lobe plugging is worse than a year ago and both said to me when I mentioned my thought of it being caused by my sleeping on the wedge on my left side every night....both said yes it is possible and more than likely contributing to the build up in that area. Which of course means I need to concentrate postural drainage on my side...right side for left and left for right side drainage. If I've got that correctly.
Scoop I have not any pulmonologist mention "increased polys". I do see you mentioned "lots of neutrophils". I guess that means neutrophils/polys are one in the same.
I think sometimes we forget this...that which you said "Pulmonary treats the patient and not only the sputum culture. "
Present Decision Consideration: So far I feel well, no exacerbations, sputum clear, low load MAI, overall physically strong for my age with very little to no fatigue. energy level is fine (but sure not like it was in my early years) and still not started the antibiotics. At 83 I continue to give thought to starting the antibiotics. Some of our comrades here on Mayo have had parents that had BE and feel/felt sorry and glad their Mom did or did not go on the antibiotics late in life and questioned my going on it at my age with a low MAI load. I certainly understand their question to me early on "why" you feel well and it's a low load. etc. etc. "why do the antibiotics." I am now giving thought to the idea of 'trying' the antibiotics .....I am beginning to feel I need to go for it and try to clear the low load of MAI. Decisions, decisions....they probably will not end due to the BE and living life with it and time dealing with the changes of the body with time.
All thoughts are welcomed and appreciated.
Barbara

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