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What's your experience wtih Brinsupr (brensocatib)?
MAC & Bronchiectasis | Last Active: 1 hour ago | Replies (646)Comment receiving replies
I just wanted to share with you that after about 12 days on Brinsupri I have become cautiously optimistic.
I have noticed a surprising increase in my energy, less mucus, particularly green mucus. This was very surprising to me because as mentioned by other members, I didn’t expect any results or improvements until 4 to 6 weeks.’
I have cut back on my air clearance, particularly the best Vest because I fell and injured my back and could not cope with putting it on
Also, I missed one day of evening air clearance… surprisingly, I have Not noticed any difference even with the reduction in air clearance
Nevertheless, I have continued to feel much more energetic and strong. I never had much of a cough, but I do believe this could be a very promising drug for most of you.
I have upped my regimen slowly. I’m really fast walking 30 to 40 minutes and now I am able to do a little bit of a jog
This is truly a hopeful experience
Also, the study concluded that there was only a 20% reduction in flares and exacerbations, etc.
That may be the case, but overall, it has been a very positive experience
Minimal side effects Except for some annoying headaches, which disappeared after the first week
PS I’m on the 10 mg dose
I’ve tried it within without food and it doesn’t seem to make a difference although I do take it in the morning
I hope all of you have the opportunity too. Try this very promising medication.
It’s worth the hassle of getting it.
I’m terrified that this will change because really I haven’t felt this good in two years since I was first diagnosed with chronic pneumonia with abscess, etc.
Best regards to all Jill Crawford
Replies to "I just wanted to share with you that after about 12 days on Brinsupri I have..."
following interested in Dr Chalmers presentation on CT information at the Chest Conference.
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!
That’s great news about the culture! Regarding mucinex you could always try to see if it helps.
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
What is the hassle of getting Brinsupri from Medicare pharmaceutical benefits?
Insurance for this is very personalized. It all depends on your plan with Medicare or your secondary. I have Part D as well as an AARP/ Medicare RX plan and other than an initial $1500 out of pocket charge I am fully covered. I am a patient at Mayo Jacksonville and had no problem getting a prescription from my Doc there.
I started Brinsupri 4 weeks ago. The first week I was having a flare up and needed a bronchoscopy. The next almost three weeks my experience was like many have related: less coughing, less mucous, less tired, no wheezing. Then on the 4th week I suddenly had more and more trouble breathing, little mucous though, wheezing increased to constantly and a few coughing spells. I sound like I have a cold, stuffed up. I see my doctor tomorrow but perhaps I have an upper respiratory infection as noted in some side effects. I'm very bummed and hope I am not sliding back to the old way of feeling. Has anyone had this experience of feeling better and better only to slide back to difficulty breathing and coughing?
I have been on it for two weeks. The biggest thing I notice: nothing! By that I mean within two days of starting the drug, I am no longer reminded by extreme shortness of breath all day long that I have a lung disease. For most of the day, I do not feel sick. When I nebulize saline or hammer uphill on the bicycle, I am not wheezing, and if I cough, it is productive, not stuck in my throat. On the bicycle, my heart rate was jumping to 200 when I went up a hard hill (I had a full cardiac workup a month ago‚ echocardiogram and heart catheterization, and all was normal with that system.) Now I have a hard time getting it to 160, and my VO2 max has gone up to 36 for the first time this year. Morning after waking up and lying down at night are rocky for about a half hour, but otherwise I feel great. I still have to do all the things I was doing before, but this has made a world of difference for me.
so reassuring I’m so happy that you respond positively
This is a dream come true if it continues. My life was previously all about Understand be and I was limiting my world accordingly. Now all possibilities have reopened, even though I’m now 75.
Please let me know if you’re positive reaction continues
There was a new study release today, which showed that there were positive structural impact on the lungs on the 25 mg dose evident in follow up CT scans, etc.
So I don’t think this is a fluke Maybe the real thing that we have been waiting for
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Delighted to know you are experiencing improvements from Brinsupri! My experience has been similar to yours except I have not missed a clearance session (yet). My AC sessions are now around 30 minutes vs 45+ minutes. It's a relief to have less and lighter color mucus. More energy, less coughing, a good thing!
This week I'm paying attention to Dr. Chalmers talk at the annual CHEST meeting. His talk entitled, "Effect of Brensocatib on Computed Tomography Outcomes in Patients with Non-Cystic Fibrosis Bronchiectasis: An Analysis of the ASPEN Trial". That would be quite something if research is seeing [positive] changes in CT scans of those on Brinsupri. We'll have to wait to find out. Fingers crossed.