Brinsupri follow-up

@deestrada I started taking the 25mg Brinsupri on October 1st. I noticed within 2 weeks of starting that the palms of my hands were feeling funny. I mentioned it to my dermatologist, and she said not to worry about it unless it got worse. Now, my palms are always itchy, and the skin feels dry and rougher. I noticed in the last couple of weeks that the soles of my feet were itching as well. I spoke with the PANTHERx pharmacist yesterday and she said that those are the first symptoms of hyperkeratosis (skin thickening).

I have reached out to my pulmonologist, asking if I can temporarily stop the Brinsupri, since I have also been on antibiotics for pneumonia since September. I would like to clear the pneumonia before resuming the Brinsupri.

Infectious Disease sent me to Pulmonologist to see about getting on Brinsupri. He said no, not right now. He stated that I am using 7% saline, my vest, and wearing mask and gloves when I do yard work. I am doing everything right according to him and he wants to wait and get more data. He did say that there were lots of side effects. Out of all of his patients, he only has one that he will recommend getting on Brinsupri at this point. Infectious Disease has 4 on it. 3 are doing well and 1 had to come off because of bad liver function test. So I guess I wait. Doing much better now that it is cold weather and have not had a new infection in 3 months. Before that, it took me 2 years to get rid of Stephatrimonius Malphilia from the shower. I now take precautions when taking a shower by leaving my shower door open and the bathroom window to provide more air circulating. Also the fan is on above the shower as long as I am in the bathroom and we installed a shower filter.

My daughter was very excited to be able to start this drug. She is a 42 year old childhood brain tumor survivor. Her lung damage is one of the many long-term effects from radiation treatment in 1986. The approval process was smooth. Her doctor took care of the paperwork. Unfortunately, she can't swallow pills and there's no liquid form. This drug can't be chewed. So, she can't continue at this time. Best wishes to you all!

@lilianna
Thank you

I have been on Brinsupri for 3 1/2 weeks. My doctor told me that I should begin to see improvement anywhere from 1-4 months. I had an aspergillosis infection when I started brinsupri. I began to see an improvement in my fatigue level after about two weeks and have had no side effects. I began a 3 months treatment for the aspergillosis 2 days ago and hope that knocking out the infection along with the brinsupri will greatly reduce my fatigue. I’ll report back. I would recommend that if you have a chance to take brinsupri, you should take it. The possibility of feeling better is worth the risk of possible side effects.

@mariegrace
is it lower or upper RI that is a potential side effect?

Literature said lower

@maryjanechilds

@maryjanechilds
This is very timely for me, as I started Brinsupri three days ago.So you are just ahead of me.I have MAC bacteria, and in week 8 of 9 antibiotic therapy. Your fatigue improving is so encouraging to me. I’m used to pretty good energy for a 74 year old with no underlying issues. But the fatigue is real.My sleep has also been compromised, not because of coughing. Air clearance therapy I do religiously, it’s very helpful. I look forward to your progress on this drug, and others on the forum too.

@scoop
I have a band of pealing skin at the edge of my heal, pealing inward toward the sole of my heel. So it appears the thickening stems from my sole heel.