Brinsupri follow-up

@jillcrawford @scoop I am totally beside myself and all can probably tell by how many times I have asked questions about our mucus and mucus plugs etc.
I have been bringing up mucus plugs with the morning and evening therapy...saline/AC/huff cougning. I clear all into a clear solo cup that I have a least 20 or more mucus plugs each session of late. I wake up each night several times and have to take time to clear the mucus out before going back to sleep.
I also have to clear my throat all day long in between therapy sessions because of this annoying feeling of sputum/phlegm/mucus, or whatever it is. This sputum/phlegm/mucus, or what ever it is, seems to never stop coming up to my throat...and I have learned to suck it up and out. It is especially worse after I eat.
Questions: Scoop, do you have any of the above concerns as I?
jillcrawford, Do you have any of the above concerns as I? You did mention mucus plugs.
Hope you feel comfortable with my questions.
Have either of you heard or know if the worse the inflammation becomes the mucus plugs increase?
I have no shortness of breath, including when I do my walking exercise. Overall I feel well, but at times find myself losing energy towards the middle of the day. I know at 83 I have to expect a bit of less energy level but I think it is somewhat related to the energy given to doing the total therapy that goes along with nebulizing????
I see the pulmonologist the end of the month and have taken a picture of the solo cup with all that ends up in it to show him........I am going to ask for the Brinsupri.
Barbara

@blm1007blm1007 Sounds like it's been a long road with the annoying throat mucus and plugs! I will try my best to answer your questions. First of all, when I think of a mucus plug, I think of a hardened secretion, almost like what might come out of the nose. Hardened, I believe, because it's been "stuck" in one of the airway tubes for sometime and dries out, thus the increased density/hardness. At one point, that mucus plug, was glob like mucus but was not removed so it turned into a mucus plug.

Although small mucus plugs (as I describe above) come up in me, infrequently, (size approximately 1/4 cm, give or take) the usual secretions (with airway clearance) are more like loose sticky globs. Yes, they can appear roundish but if I were to squish them, they would squish easily. Whereas, mucus plugs although appearing roundish, do not depress as easily as the glob. They are more discrete unto themselves than the spreading globs.

Please refresh my memory what your last sputum revealed and if you have tried long acting 1200mg mucinex.

@scoop I have tried twice to respond and post went away after I hit reply. So this is a test.
Barbara

I’ve been on brinsupri for 26 days and thought I’d share my experience so far. My sputum is probably about the same amount (I don’t measure it) but clearer and looser. It seems to come from a bit deeper. I was never much of a cougher but saline or irritants can trigger a strong cough reaction now - not frequent, but annoying. My palms are a bit red but no tough skin. The best change is stamina! On day nine we hiked about six miles. We usually do 2-3 miles because I just wear out. My daily energy is better- the afternoon slumps are mild. I’ll be curious to see what happens to pulmonary function and CT over time in those taking brinsupri. I appreciate everyone’s comments on this forum!

@blm1007blm1007 Deep down, I know that you are right. I wish I was more comfortable to set up something like a Go Fund Me for myself in terms of the financial problem. I know this is going to sound juvenile, but I find so much embarrassment when thinking about setting something like that up for myself. However, I do know that I need to go to NJH at some point because there has still not been a single doctor that has been able to definitively tell me WHY I have this condition, just that I DO. I know this is very common for the non-cystic fibrosis bronchiectasis community, but given that I am so young, it is frustrating that they cannot even attribute it to wear and tear on my lungs as a result of aging, or some other common cause. I do know that I carry a variant of the cystic fibrosis gene (so I am a carrier, but do not have it), and I wonder if that could be a reason as to why I have presented so many respiratory problems, but even in getting those results back, they still told me it was such a rare variant and was not connected to any disease causing symptoms, that this was unlikely.

I have had several conversations with the staff at my school and they have been very accommodating and are aware of my situation. I actually did go home to see my Pulmonologist on Thursday and got a new chest CT and was assessed by him. Whatever I had must have been viral because after finishing an antibiotic and still experiencing symptoms, my chest CT did not show any abnormal bacterial growth (aside from the normal excess mucus expected in the chest CT of a bronchiectasis patient). I am getting a referral to the pulmonology center here at Northwestern so I have a more convenient place to get looked at while I am living here.

I am still taking my Brinsupri daily, and my pulmonologist does not seem to think that my sudden health disparities are necessarily correlated to the medicine, but are just happening coincidentally. I am on a steroid now for my excessive wheezing and am hoping to see a difference made in that regard soon (has anyone experienced increased or new wheezing after taking Brinsupri)? Aside from this recent illness, I have not noticed any other severe side effects (aside from occasional nausea and shakiness if I take it without food), but can not say for sure if I have noticed a positive difference either. I will continue to update this forum as my journey continues and would love to continue hearing how the medication is affecting the rest of you.

Hearing positive things about the medication is keeping me hopeful. Thank you for your, and everyone else’s, kind words. I am very happy and feel very fortunate to have found this group.

@scoop
Tried 3 times yesterday. Hope all systems are a go after the possible outage. I guess this is called perseverance....my fourth try.
Globs- I had what I would call globs, soft deep green globs, before knowing what was happening with me and before my diagnosis in 2022 and before going to NJH in Oct. 2023. Presently I don't have the same color and size globs.
Mucus Plugs- What I am calling mucus plugs are soft light to dark yellow soft pieces in various small sizes and various shapes. They may have a slight green tinge to the yellow. They are no greater than the 1/4cm. Yesterday I took pictures of what I bring up into the clear solo cup to take and show the pulmonologist this month. I may have misunderstood the respiratory therapist that Dr. McShane had associated with her team in Tyler. When I showed the respiratory therapist (who was really good) a sputum vial of what I brought up she said, "You have a few mucus plugs in there."
Sputum Test Results: The early October results were indicated to me verbally by the very caring and long term pulmonologist nurse as: "No showing of the MAI infection, no respiratory pathogens." The paperwork itself did no show signs of, or indicated, abnormal. There was no listing on the paperwork such as the typical listing of a numerical number like +1 etc, nor no typical listing of the number of colonies....as all results previously had shown.
Antibiotics: I had/have not taken the antibiotics as Dr. McShane wanted me to start in October of 2024.
New Sputum Submission: Considering the last results and 'shock' of the results I immediately sent in another specimen and will await results. Hope it indicates the same results.
Mucinex: I may be wrong in my understanding but I thought it was considered more so if your mucus was sticky etc. and hard to get up and out. I have no problem getting all up and out. I may be wrong in my understanding???
Barbara
sxdurran
Tried 3 times yesterday. Hope all systems are a go after the possible outage. I guess this is called perseverance....my fourth try.
Globs- I had what I would call globs, soft deep green globs, before knowing what was happening with me and before my diagnosis in 2022 and before going to NJH in Oct. 2023. Presently I don't have the same color and size globs.
Mucus Plugs- What I am calling mucus plugs are soft light to dark yellow soft pieces in various small sizes and various shapes. They may have a slight green tinge to the yellow. They are no greater than the 1/4cm. Yesterday I took pictures of what I bring up into the clear solo cup to take and show the pulmonologist this month. I may have misunderstood the respiratory therapist that Dr. McShane had associated with her team in Tyler. When I showed the respiratory therapist (who was really good) a sputum vial of what I brought up she said, "You have a few mucus plugs in there."
Sputum Test Results: The early October results were indicated to me verbally by the very caring and long term pulmonologist nurse as: "No showing of the MAI infection, no respiratory pathogens." The paperwork itself did no show signs of, or indicated, abnormal. There was no listing on the paperwork such as the typical listing of a numerical number like +1 etc, nor no typical listing of the number of colonies....as all results previously had shown.
Antibiotics: I had/have not taken the antibiotics as Dr. McShane wanted me to start in October of 2024.
New Sputum Submission: Considering the last results and 'shock' of the results I immediately sent in another specimen and will await results. Hope it indicates the same results.
Mucinex: I may be wrong in my understanding but I thought it was considered more so if your mucus was sticky etc. and hard to get up and out. I have no problem getting all up and out. I may be wrong in my understanding???
Barbara

That’s great news about the culture! Regarding mucinex you could always try to see if it helps.

@sdugan001 Good to hear from you and good you are doing and giving thought to all you mentioned.
Regarding: "there has still not been a single doctor that has been able to definitively tell me WHY I have this condition, just that I DO." If you are speaking of the BE, Bronchiectasis, we all wish we knew why we developed Bronchiectasis. That is the 10,000,000.00 dollar question.
For me, in my case, I believe it was an accumulation of things in life that brought on the BE. As far as having the infection, I attribute it to having 3 different pneumonias in previous years, gardening (peat moss with bacteria), cleaning out bird houses and breathing in dust/bird bacteria, blowing and cleaning up dry leaves without knowing I was probably breathing in bacteria after the leaves sat there for several months and bacteria formed on them and in the soil that I was obviously too close to and not wearing a mask and multiple times of being under unrelenting stress that lasted for months and years and a depressed immune system. I was under a great deal of stress just before having the symptoms that something was going on with my system. Also I grew up breathing in second hand smoke, my Mom smoked...who knows... but it all possibly added up in my case. Another factor could be having to go back to a new school year and the classroom smelled of chemicals after a total remodel to the classroom, therefore breathing it all in. I was 79 when all this problem with inflammation and BE begun, otherwise for me, I had not had a chronic illness until then/now.
Go Funding: If that is the 'only' way to go to NJH, please don't totally put that as ....I couldn't do that. It is your health and life ahead and as long as it is a legit reason, your health, young and in school etc. etc. people will understand. So much can be learned by that also, I would imagine.
NJH: I wonder if you have had all the tests that NJH would do considering your history and what you have been told by the doctors so far. Also, hopefully you have had some of those tests that are standard at NJH or may be given to you at Northwestern.
Medications: It becomes difficult in some ways when we start taking one medication and then another to know exactly why certain changes are or are not happening. Did the doctor tell you and do you know the side affects of steroids. Just so you understand all that and are conscious of it.
Two Cents Worth: Most important as you go along now in life, get enough sleep .....and eat healthy as best you can. Make simple healthy meals and choices. It is not easy but it matters moving forward for yourself. We can't say that is hard to do...... we just have to do that for ourselves.....do it while you are young and be ahead of the game.
Brinsupri: I hope to go on it soon and for a person who has turned down medications frequently, this one, Brinsupri, I have got to try it to see if it will help me also. The inflammation is causing me dry eyes and eczema. So hopefully it does the trick they say it is suppose to do...help with inflammation.
Wanting it all to work out for you.....keep in touch with us on this site.
Barbara

I am entering my second month on 25 mg. An amazing difference for me with no side effects. I used to have 10-15 violent coughing events per day. I am now down to one of two. My energy is back, my appetite better , my mucous production less. In short it is all very positive so far. Not to overuse the words, but this indeed has been a miracle drug for me (87 years old and 2 1/2 years since diagnosis at Mayo). Fingers crossed that it continues to work. PCIII

@pagechapman I too am 87 years old, in good health other than this, and debating whether or not I should take this. So far no one seems to have any side effects worth mentioning. How hard was it or what steps did you have to take to get the prescription? Does Medicare cover it under the pharmaceutical app?