Connect
Brinsupri follow-up
It seems a bunch of us have started Brinsupri. Let's use this thread for discussion. If you are taking Brinsupri have you noticed anything different, including changes to bronchiectasis or side effects? How long have you been on it?
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
I’m about to finish my 4th month on Brinsupri . I’ve definitely had less mucus and coughing . I did catch a bug in December , but azithromycin seemed to knock it out quicker than normal . No steroids were needed . The mucus kicked back up during that time , and was the slowest exacerbation symptom to get back to pre illness levels. I have mild BE, and I’m on 10mg. So far the only significant side effect was that it was causing insomnia . The pharmacist recommended to take in the morning , as I had been taking it at bedtime . The insomnia was relieved with the a.m. dosage change.
-
Like -
Helpful -
Hug
1 Reaction@lss111
1. Has Brinsupri significantly improved your lung function, decreased flares and when you began to improve? No PFTs yet since starting Brinsupri 4 months ago. Feel better overall, more energy. Most days less sputum.
2. I read it may take 4-6 months for approval- experience with approval process, has anyone been denied? Mine took around 1 month.
3. I am concerned about serious side effects. (everyone is!)
Skin - Literature/trial data show there's an increase in SCC, BCC (non-melanoma skin cancers) in those taking 25mg Brinsupri [less than 1 person per 100]. I've had to move up my derm check as there are a couple of spots I want checked. Being cautious and conservative. I see derm 2x year as I've had lots of UV exposure and have fair skin. If SCC or BCC diagnosed will move up to 4x year checks. Hard to know if they are related to Brinsupri. These skin cancers are very very common in older adults.
Hair loss- none that I am unaware. Hair naturally thins with age anyway.
Dental- Take good care of teeth with twice a day brushing, flossing and fluoride rinse. Early gum disease is reversible.
My advice: try it you can always stop it. It's the ONLY FDA approved treatment for bronchiectasis, documented to slow progression.
-
Like -
Helpful -
Hug
3 Reactions@irenea8 Hope the approval and all goes well Irenea. I will be looking forward to hearing all, the experience with securing the Brinsupri and how you do with it, if you feel up to it down the line.
Barbara
-
Like -
Helpful -
Hug
1 ReactionI started on Brinsupri on 9/11 and initially it made me cough a lot more. That was the only thing I noticed. Now after 4 months the coughing is less much less then even before taking the med. I curious if they start everyone on 25 mg or 10 mg?
@scoop I’m curious how you know that 1 in 100 people take the 25 mg regimen. Did I read that correctly? I am on the 25mg.
@patti55 Sorry I was not clear. From Brinsupri insert:
Skin Cancers: In ASPEN, the incidence of skin cancers among patients treated with BRINSUPRI 10 mg and 25 mg was 0.5% and 1.9%, respectively, compared to 1.1% in placebo-treated patients.
So on placebo 1.1% of patients developed BCC or SCC (non-melanoma skin cancers). Of those on 25mg Brinsupri, 1.9% developed skin cancer. The difference between 1.9% and 1.1% is 0.8%, which is less than 1% or 1 in 100.
@scoop Thanks for the clarification on that. I appreciate it.
I am on month 4 of brinsupri. Today I noticed an itchy small patch on my thigh- looks reddish and bumpy as if empty under the itchy part of the skin, kind of dry on the surface. I will observe how it develops. So far I put some hydrocortisone on it. I really hope it’s not the starting the dermatological side effect of brinsupri. I know from here some had it. How was it dealt with. Thank you
-
Like -
Helpful -
Hug
1 Reaction@lss111
Thanks to all.