Brinsupri follow-up

Hi All, I have been a patient at NJH for 7 years and am just now considering starting Brinsupri. I'm a bit concerned about the side effect of thickening skin at palms and soles, but I guess it will be worth it if it halts the BE. Anyone experience the skin thickening yet, or is it still too early in the process?

Brinsupri raiding blood pressure

Has anyone had this problem ? It’s a common side effect. Mine had raised drastically after 6 weeks and controlled with a low dosage BP med for 20 years. Pulmo says I can keep taking it as long as my PCP can manage my BP which we’re working on.

Hi @lmasch22 and @sharonednaramsey. The Brinsupri website at https://www.brinsupri.com/taking-brinsupri has a chart showing the percentage of Aspen study participants who experienced specific side effects. You might find it reassuring!

I also have Optum RX which does not have a specialty clinic for Brinsupri. I get my prescription from PANTHERx specialty pharmacy. They are very good and I was able to get into a co-assistance program.

@tcd518 thank you for sharing this chart. Apparently I am in the 3% high blood pressure symptom( never had high blood pressure before)

I got my first bottle of Brinsupri today. I took my first pill 4.5 hours ago. I FEEL 90% BETTER!!! I will pray this keeps up!!!!

My update:
Started Brinsupri on October 4th. The only thing I've noticed, as far as adverse side effects, is hair loss. It's become very brittle and getting thinner. I definitely notice a reduction in cough. I feel like I need to start taking Mucinex again - was taking it for my cough prior - because the post nasal drip is really thick. My nose still constantly runs, though. Go figure. I don't feel as though I'm breathing any easier because there's a tightness in my chest I hadn't noticed before. My energy level is up! That's the best part.
It notes on the Brinsupri site that "These are not all of the possible side effects of BRINSUPRI." Has anyone tried to get a comprehensive list?

@rob73ert
That is pretty quick! Let us know if such an improvement continues or was a fluke.

@dpaula When I went to the pulmonologist, he recommended Brinsupri. I signed the papers and was scheduled for a PFT, that appt took two weeks. After the appt, two days later I got a phone call from the program.two days following my packets arrived in tha mail. Another two days they’d called and told me all was a go. And they were ready to deliver in two days. So the process goes quickly.

I have already mentioned here that after about 6 weeks of taking brinsupri my blood pressure went up but since I am a low blood pressure person it was not dangerous. Eventually it settled at about 130 so I keep taking the med.