Brinsupri follow-up

@mariegrace
Does your doctor said it causes skin cancer or you have read somewhere ?

@mariegrace
I see the skin cancer was mentioned in the package insert. The incidence was 0.5% and 1.9% for 10mg and 25mg, respectively, 1.1% in placebo.

@swang18
Read it

@swang18
Why would placebo group develop skin cancer??
There was no difference in improvement after 1 year between Brinsupri and placebo, which my husband found.
When I brought it up to my pulmonologist, she said there was a 20% reduction of exacerbations after 1 year.
She also said there is a new drug coming out soon!

Has anybody had an increase in joint pain with Brinsupri? My pcp and the pulmonologist says not a side effect.

I started Brinsupri in September. I now am experiencing the skin thickening on my feet. Very annoying. My dermatologist has me on a steroid cream and an exfoliant for 14 days. Frankly I'm not sure if the condition can be eradicated while on the drug. I called the Enlighten support patient line and there is no detailed information on patient experience. Anyone else experiencing feet problem?

@deestrada So far I have not experienced skin thickening but have only been on Brinsupri for 10+ weeks. Would it be possible to say more about your symptoms? How did you noticed the skin thickening on your feet? Is it only on the bottoms of your feet or all over? Does it interfere with your walking, or itchy or other?

My fingertips feel rough but that's par for the course each winter it seems especially with the cold snap. The soles of my feet are different in winter than summer too, less exfoliation it seems.

I hope you get some relief with what the dermatologist gave you!

@mariegrace Marie it’s hard to make decision after your loss. A big hug for you.
Yes 20 % seems to be not a lot but every time even one time you get sick your lungs get worse. So I would at least try to take it and see how you react to the medication and you can always stop it. Again I am very sorry for your loss.

@mariegrace First and foremost, I’m sorry for your loss. I also have similar concerns about starting this medication. I am colonized with pseudomonas and have read that the medication may improve symptoms by 20%. In addition, I could develop pneumonia as one of the side effects. I’m 75 and don’t know if the benefit out ways the risk for me personally. I’ll be in touch with company pharmacist to address my concerns. I’m only in the beginning of the approval process.

Thank you, I am 78 and dont do well with medications.
Yes in addition to side effects mentioned, you can develop lower respiratory infection which would not be a good outcome.
Lets keep in touch

Marie