Brinsupri follow-up

I have been on Brinsupri fod a week. I have experienced headache and nausea. Also I am coughing up more mucus than usual, but the mucus is thin and doesn't present a problem.

@starlight1 I started getting small callous like lesions on my legs after about two weeks. I had a couple of what looked like small open soars on my hands and arms. It wasn’t a rash though. There was one in my leg where the skin was peeling. I must say I am super sensitive to medications. My doctor at Mayo took me off brinsupri and I will see a dermatologist. We may try lowering the dose to 10 mg instead of 25mg after we see what the dermatologist says.

Brinsupri and headache and high blood pressure

My blood pressure has been managed with a low dose BP med for 25 years. I’ve been on Brinsupri for 6 weeks. For the past week I’ve had a headache and one that was so bad I checked my BP. My BP is significantly higher than my normal. Waiting for call back from pulmo. My PCP raised my BP med in the meantime. Pulmo office suggested not to take Brinsupri until I hear back from office but it’s a Friday. Has anyone had to discontinue due to elevated BP or stopped it cold turkey either ?

@vmorton
Please let us know if the headache and nausea go away over time. I sure would not want to continue otherwise!

will do. Thank you.

@lindabreathless Good luck - my rash went away, so I'm continuing the 25mg. I'll see how it goes.

I am on Day 5. First 2 days nothing different but nausea started Day 3. Waking with cough 2-3 x/night since. Day 4 woke coughing and gagging and stomach upset continued all day. Day 5 now and did wake during night again but nausea seems better this morning. Fingers crossed.

It’s my observation too. I, a low blood pressure person all my life, now my BP is 120-130.

Well, I've been taking Brinsupri for one month now. So far, no side effects. I did have some stomach upset for a couple of weeks but I also was having lower GI upset due to some food I ate, so that is kind of perplexing to sort out. Regardless, whatever that episode was is out of the picture now.
On the positive side
1. I consistently feel good (although I did not feel bad, there were days when I just did not feel as well as others)
2. Less sputum, less "blobs" which equals less hard work to get that stuff out
3. Exercise tolerance seems even better. I already did a bike spin class 3 days a week and did well, but the exertion
of doing it seems to have improved even more. I'm curious to see what my PFT shows next time I see
my doctor.
4. Between my insurance and being accepted into "The Assistance Fund" I am paying zero for Brinspri.
Hopefully, all these these positives will not change and I do not develop any side effects later on or end up losing the help with paying for this costly drug because at this point, I consider this drug the best thing to happen for this community so far.

I just wanted to give a quick update on Brinsupri. I started one month ago at 10 mg. My breathing has been trending for the better ever since. I actually wake up with my oxygen in the 94 range. Before Brinsupri I would get up to 94 after neblizing and airway clearance.
I haven't noticed any side effects either. I saw the dentist last week and she gave me a kit of povolone iodine that you swab on your teeth and gums once a month to prevent cavities and gingivitis. I also found some acticles about using xylitol for the same effects on you teeth and gums. You buy a bag of xylitol crystals and hold and swish a half teaspoon in your mouth for a minute twice a day. I have been using both of these methods and I have to say niw in the morning my teeth do not have plaque on them in the morning like they use to. I was quite amazed with how much difference it made.