Brinsupri experience after 3+ months

Thank you. That is an interesting observation Some of my dreams are about a volunteer project I am coordinating and most likely are related to my worry about the outcome. Thus I wake up and cannot get back to sleep.

@11565lady Yes, wake up and can't get back to sleep, I know about that one.
I am not on Brinsupri but that happens a time or two each week however I find that taking certain supplements seem to help. I believe that a calcium/magnesium, or melatonin, Vit. D help with sleep. I don't know if those supplements would be a problem while on Brinsupri????

It appears t for me it helps. I find I can sleep better and get back to sleep in taking them.
Barbaraa

@blm1007blm1007 thank you. I am suspecting it may be vitamin related rather than Brinsupri.

I've been on Brinsupri for about 5 months. The 1st month I didn't feel that it was helping. I was coughing a lot and brought up a lot of phlegm. I felt tired and discouraged. The next month the coughing was less as was the expectoration.
Month 3 & 4 was a great improvement. Coughing significantly less as was expectoratiing. I felt great.
(FYI I use a nebulizer with 2 medications....not regularly but often.)
Now I've finished my 5th month. My coughing has increased tremendously causing me to bring up phlegm very often....especially in the morning. I am once again very worried that Brinsupri has stopped working.
I would like feedback from medical experts.
Thank u

I've was on Brinsupri for 2 months and was feeling good, less coughing & mucus. Two weeks ago, I started coughing more with fatigue, almost like pre-Brinsupri. I sent a sputum sample To NJH and tested positive for a low load of Haemophilus Influenzae. I think the Brinsupri is still helping, but my doctor prescribed Augmentin to deal with the bacteria..

@hop4joy Hello, I'm sorry you are not doing well right now. Mayo Connect is a patient and caregiver support network who share our journeys, successes and questions, but we are not medical professionals.

Brinsupri is new to all of us, and the long-term effectiveness is not yet known. Please share your concerns with your doctor, they may want to check you for a secondary infection.

@jago
I think you were very wise to send in a sputum to check for an infection with your increase in symptoms. Hope you are feeling better. I've been on Brinsupri for 6 months now. I've found it takes time for this medication to fully "kick in" . I had ups and downs with it and wondered at times if it had stopped working also, but continued with taking it and the grinding routine of airway clearance. Now, I am thankful I did and did not stop taking it. The difference in my lungs is remarkable. Hang in there.

@cwal Thank You! I'm so glad it's helping you. I think we become fine-tuned to the ever changing daily symptoms, and in my case it felt like it wasn't a Brinsupri fail or allergies. Mentally (and physically) I feel better having an answer to the increased mucus. I'll hit the 3 month mark soon and look forward to better days.

@scoop I should buy stock in Kleenex tissues, since I go through a large box in three days.

I’ve been on Brinsupri for 3.5 months. Within the last week to 2 weeks, the side effects started: bright red and mildly bleeding gums; high blood pressure, 150s - mid 160s / 80s; and occasionally 185/92-87, so I’ve had to take clondidine to quickly get it down; and I have a constant headache. My Dr doubled the blood pressure med I’ve been taking. I have unsteady walking and hesitant talking when my blood pressure is at its highest. Upon Drs advice, I have stopped taking the 25 mg of Brensuri until symptoms clear; then he will subscribe 10 mg instead. Can anyone tell me, once symptoms begin, how long they last? Or does your body just get used to the medicine? These side effects, if lasting, make taking Brinsupri not worth taking. I’d appreciate any feedback. Thank yoi