Brinsupri experience after 3+ months

@hop4joy I am now on my 7th month of 25MG. Feeling much, much better with virtually no side effects. In the last two months or so, however, I have noticed a slight increase in cough. It is not as productive a cough as it used to be and is certainly not as often--maybe two or three times a day vs. 25/30. I can certainly live with that, but not yet sure why the increase. Will keep an eye on it.

I have been on Brinsupri for 8 months. I just saw my pulmo yesterday and my PFT shoes significant improvement. I’ve not had an exacerbation, needed meds and I feel the difference. I don’t cough at all and no more wheezing at night. My blood pressure raised in the beginning but my PCP changed my meds and it’s back to normal now.

I had my six month follow-up with my Pulmonologist today. I started Brinsupri five months ago. For reference I was newly diagnosed with BE in October. A sputum sample confirmed MAC. He treated the infection but not the MAC itself.I took Augmentin for six weeks, and Doxy for three weeks. He gave me a rescue pack including both. A CT revealed my lungs are stable, no changes since my baseline.My PFT’s today were also stable from my baseline. He said stable is a “win”. The Brinsupri has slowly but surely improved my cough, mucus and energy.. An unexpected “ bad day” still happens but it usually is just a day. I told him I have regained about 70-75% of my stamina and energy and hope for more. He said realistically I may not get it all back.A year ago I had bundles of energy, an otherwise healthy and fit 75 year old. So I’ll deal with that by pacing things as I have been.Easy enough.Otherwise air clearance 2x daily, nebulizer PRN, aerobic exercise daily,a healthy diet and lots of hot tea or water with lemon and honey all day. I’ll see him again in six months with PFT’s, He feels the PFT’s in his opinion give him a better idea of lung changes than doing the CT’s too often,so he will wait a year to repeat a CT.Onward we all go to living our lives! Jeanne

@sharonednaramsey
What meds did your Dr change you to in order to reduce your blood pressure? Brinsupri caused such a high blood pressure, I had to double my blood pressure medication, but it still rose high between taking my med.

Blood pressure meds are very specific to whom and how they work. I had been on low dose amlodipine for years at 5 mg. When my BP went up due to Brinsupri they doubled it to 10. That caused my ankles to swell which I had never had in 67 years. So they added HCTZ a diuretic which I hated and caused it to go too low. Oncall Dr switched to Lisinpriol which I only took for two days because the dry incessant cough returned which I had had for years on that med not knowing it was from the med. Switched to low dose Losartan 25 mg and my BP has been great ever since. It was a few frustrating months but it was worth it to stay on the Brinsupri. BP meds unfortunately take some time and trial and error to adjust when you have to change meds

@sharonednaramsey Thank you for reminding us that "everyone is different" and for relating your journey to success.

People, including me, tend to get a bit impatient when medicine doesn't "get it right" on the first try, but doctors are not magicians, nor do they have a crystal ball to tell them how each of us will respond to a medication or treatment.

So, they go with an established protocol, based on least-harmful and most likely to succeed. The matrix says try [medication1] first, if it doesn't work increase the dose or add [2nd medication], if that fails, switch to [3rd medication], if that fails perform [tests] to determine next action.

That matrix was developed from the medical records of thousand and thousands of patients. This is why it is SO IMPORTANT not to "silently quit" when a medication fails you, because failures and second tries are factored into the matrices. What frustrates me is when people who should know better, like retired RN's, quit vital meds like BP or cholesterol without working through it with their docs.

@whitemarsh Hello besides your side effects, is it still a miracle drug as you say, and has your condiiton improved to date.
Please indicate on levels 1-10, before and now.

Before, and after, about 4-5. Couldn’t tell any difference in cough or fatigue

I was diagnosed with BE in 2020 and with MAC two years later. I did the “Big Three” antibiotics for nine months but still tested positive for MAC. I was taken off the antibiotics but felt okay. A year later I tested positive with pseudomonas and have been constantly fighting it. I went to Mayo Clinic in Rochester, MN and my pulmonologist there put me on inhaled Colistimethate which I have been on for over a year. I do airway clearance using an Aerobika and nebulized 7 percent saline followed by the Colistimethate twice a day. I have had some setbacks including two hospital stays with pneumonia and four two-week outpatient rounds of IV infusions of Cefepime due to BE exacerbations. In January of this year, my pulmonologist recommended I start taking Brinsupri. In February I started the medication and was told not to expect any improvement until at least after the first month. I have just started my fourth month and can really see the difference it has made. My airway clearance is still very productive but I seldom cough during the day. My sleep used to be affected by lots of coughing and I am no longer dealing with that problem. I feel the Brinsupri is working well for me and luckily I am not exhibiting any side effects!

@ja24 This really got my attention "My sleep used to be affected by lots of coughing and I am no longer dealing with that problem." I wake 2 to 3 times a night to clear my bladder and then have to clear my mucus to help me go back to sleep...hopefully back to sleep.

Glad to hear the Brinsupri is working well for you and no exhibiting side affects.

I have not done the antibiotics. I went from a small load of intercellular to nearly nothing showing within the sputum testing.
I am hoping should I, with my pulmonologist, decide it is time to try Brinsupri....it will work for me.
Barbara