Brinsupri follow-up

@pagechapman
Do you normally tend to get side effects from things or usually not?

The only bad side effects I really have had from any drugs were from the big 3 trying to deal with my MAC.

Hi everyone,
I have several filling in my teeth, lately they started acting up. Sometimes, I feel a sensation or a little pain, but it all lasts momentarily. I have been on Brinsupri for about 9 weeks now, because of the side effects of Brisupri, I saw my dentist yesterday. He took some x-rays and he checked my teeth. He said he did not see any problems. So far nobody reports the problem, which is a good thing.

Ling

@pagechapman Please keep us posted on this thread with your continuation on the Brinsupri.
So glad to hear such a good story about being on the Brinsupri and as well your health in general.
Barbara

I've been on for one month, and I noticed that my blood pressure has elevated, which is one of the side effects that was mentioned in the documentation.

Brinsupri Update! I started Brinsupri (10 mg) 3 weeks ago on thanksgiving day. Not sure what is going on but I feel much better!!! I was really dragging prior to starting...I am battling Bronchiectasis, weak heart (30 ejection fraction, and neuropathy (caused by Linezolid)! I was extremely short of breath and had zero energy. I am still sob but not as bad as before. My coughing is not as bad as it was prior, and I may be coughing up slightly less lung crap. I have had no side effects up to now and can actually do some things around the house. Hopefully my improvement will continue. Thank you Brinsupri!!!

PS: First time I saw SOB in my records I wondered what I had done to offend those people!!

Is anybody taking Brinsupri who is colonized with pseudomonas? If so, please share how you are doing and any side effects. Thank you.

@lindabreathless
I have been on 25 mg Brinsupri daily for 5 weeks. I feel my coughing is less, my energy improved and less sputum though I didn’t produce a lot to begin with. I have BE and untreated MAC. My CT scan shows a reduction in nodules. No problems with medication but just started noticing the soles of my feet feel thicker on the balls of my feet. In some areas there are deepening fissures and peeling. Hands and rest of skin seem ok. This is definitely new as I usually have really soft feet. I don’t do professional pedicures (sanding of heels) and don’t wear a lot of sandals or go barefooted. So far, the foot issues are not painful or a problem. I am trying Amlactin or Urea lotion 2x/day to see if I can gently keep exfoliating. I am devoting extra attention to moisturizing all over. I would appreciate any other suggestions if anyone else is experiencing similar symptoms.

Had NTM 2002 - resolved with 18 month therapy of biaxin, ethambutal & rifampin. Tried rifabutin - resulted in 5 day hospitalization with pancytopenia.

Started 10 mg brinsupri
10-1-25 - prescribed by NJH after week of testing & education. Had 8 lung infections (pseudomonas) year prior.

This past week developed sore throat, sinus drainage, weakness, productive cough & poor appetite. Neg for influenza A & B. Sputum sample negative. Sent additional sample to NJH (results still pending). Pulmonologist says respiratory virus going around. Prior to brinsupri, I would have
ended up in hospital or emergency room & on levaquin. I noticed my sputum remained almost clear & not copious on nebulizing 1x/day. I managed sinus drainage, sore throat & cough with neil med nose rinses, salt water gargles & honey. On day 7, I have turned the corner. With past respiratory ailments I would have been on Levaquin, in bed for a month with copious amounts of thick yellow mucus expectorated upon nebulizing & another month of recovery. I of course have reported this to insmed health educator who follows me and to pharmacy that supplies my brinsupri.

@gctaylor1 Thanks for posting these photos. I use prophylactically, especially in the winter, AmLactin Foot Repair Cream with 15% Lactic Acid AHA on my feet to ward off any potential thickening of skin, as I am also on Brinsupri (3+ months, so far no side effects except for feeling better, less coughing, less phlegm, better sleep, more energy!)

Because of the possible side effects on gums, I floss every day and use a recommended rinse after brushing/flossing, which I swish for 30 seconds before spitting out. The hygienist gave me a refresher on flossing, which I'm glad she did because I wasn't doing it correctly.