Brinsupri follow-up
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.
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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.
@picartist It arrived at my door a week after I asked my doctor for it. I had no copay. My Aetna Medicare was easy. I am a State of Illinois Retiree and our plan, as far as medication, is pretty good.
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.
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4 Reactions@deestrada Yes! I started Brinsupri a little over 4 weeks ago. First 3 weeks went swimmingly; the last week I've become chestier. Today I dropped off a sputum sample wondering if something might be going on. More coughing spells and sleeping not as well as weeks 1-3. I've read that there is an adjustment phase and it can take up to 3+ months to reach a new baseline. Hoping....
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8 Reactions@pagechapman
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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1 Reaction@spectrumcyclist
yay team
we should pull our responses and do our own analysis because the current data does not seem to consider early subjective responses that we seem to all be having
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5 Reactions@spectrumcyclist
Great news! Do you have MAC also as well as Bronchiectasis? Also, as a fellow bike rider, I am interested to know how you figure out your VO2 Max. I thought this was something that had to be measured in an "exercise lab" of some sort.
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2 Reactions