What's your experience wtih Brinsupr (brensocatib)?

I absolutely loved hearing from you. I'm 76 and there are days I want to quit because it's all so exhausting. Do you ever wonder why did we get this? I'm sure my Mom had it and died from it (with little or no help in the 80s). 40 yrs later I'm a repeat of everything she went through, but I wouldn't trade my mom, if that's where I got one bad gene. I hope you continue to enjoy the improvement you have found and thank you so much for sharing your history.

@ursala7 We have talked before - have your tried to get a referral to her from your HP primary? If not, aske to see Dr Jennifer Oldham at Anoka Rverway - once your are "in the system" with her, you should be able to get to Dr McEvoy. Just try to "work the system".

I have been on Brinsupri for 4 month, since Jan. 14. I can’t tell any difference in my bronchiectasis, and did not have any side effects until about 2 weeks ago. The first side effect was red gums and some bleeding around approximately 6 teeth. Then I started running a very high blood pressure: 185/90. I had to take Clonidine? to rapidly decrease it; then had to double my blood pressure med, Losartan 50 mg, once a day, to twice a day. It continues to run 140/80, dropping occasionally to 135/78. In addition, I have a persistent headache when my blood pressure gets to 140 systolic. My provider told me to stop the Brinsupri until my gums heal, then he’d start me back on 10 mg instead of 25 mg. He also commented that some people have to quit entirely if they just can’t tolerate it. So far, the side effects, for me, aren’t worth the side effects for taking the 25 mg. I’ve talked with Panther pharmacists on several occasions and was told they can’t suggest any meds to use to control the gum gingivitis. The med is so new, they don’t yet have enough info to tell what works for people. They just say, “talk to your dentist”, but most dentists also don’t have enough info yet. I used Fluocinonide on my gums which seems to work. It’s the same med I use on them for Mucus Membrane Phemphagoid, which is an autoimmune disease I have, but was in remission until I started Brinsupri. I’m sorry to deliver such bad news, but maybe you can tolerate it better than I.

Wow! Brinsupri!! Been on it for a month, and it is a game-changer for me. I have Bronchiectasis, MAC and Pseudomonas. My level of energy has soared along with less coughing and a general feeling of well-being. I hope that many will discover and benefit from this drug.

@susie2
Hoping your gums and blood pressure return to baseline soon. If/when you begin Brinsupri 10mg please let us know how you're doing. You are not alone experiencing increased BP and issues with gums as they are both published possible side effects. My understanding is that they are reversible once you stop the higher dose. Wishing good health and good luck.

@scoop thanks for your comments. After stopping Brinsupri for one week, my gums are clearing, blood pressure is dropping and headache has stopped. Since blood pressure is not quite normal yet, I’m reserving judgement as to if and when, to restart with 10 mg. I have some short trips planned soon which I couldn’t take with the side effects I had. Have you or anyone reading this had side effects with 25 mg, but fewer, or none, with the 10ng?

@susie2
Phew! Glad the side effects are resolving. If I had those I would have stopped too. As for me, I'm on 25mg. I have had a squamous cell skin cancer that had to be excised. To be fair I noticed the spot prior to starting Brinsupri. Not the first time as I have had a BCC and SCC a decade ago. BCC and SCCs are not uncommon as we age, especially with sun exposure and fair skin so it's really difficult to know for sure. Since Brinsupri is an inhibitor it's possible that the cells that fight skin cancers are fewer in number. I do not know, a hypothesis. Alas, we are watching another spot. Good luck if you start the 10mg. Anecdotically, I've read more here about side effects with the 25 vs the 10.

PS - I've decided to stay on the 25 as Brinsupri has helped my condition. Not a miracle, I still have bronchiectasis, but symptoms are reduced.

@pumpkin8088 Thants good to hear,how long have you been on it and what dosage.
Iam located in Australia and always heavily congested.
Will be getting a septoplasti and turbinate reduction surgery done,which may reduce smymtom severity.
Hopefully one day it will be approved here.

@brody89 I’ve been on Brinsupri since November and experienced relief in about 3 weeks. I hope you can get it soon. It’s truly made my life better!! I’m not sure if it’s good for ever lung problem. But it’s definitely a drug for Bronchiestasis.

@pumpkin8088 25 mg