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Brinsupri experience after 3+ months

MAC & Bronchiectasis | Last Active: 2 hours ago | Replies (247)

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Profile picture for phoenixrises @phoenixrises

I've been on Brinsupri 10 mg for ~ 6 months for Bronchiectasis and am 73 years old. I noticed improvement in the number of exacerbations with heavy coughing and mucous, which could go on for months, especially if I got sick with an infection (e.g., bronchial). That has improved dramatically.
At my last appointment with my pulmonologist, she suggested I increase to 25 mg. However, I soon noticed my blood pressure really jumped from normal to mid/high 140s -150s, so we reduced the dosage back to 10 mg. Even with 10 mg., my blood pressure can be higher than normal (in 130s to 140s), which I'm keeping an eye on. Besides the increase in blood pressure, I'm noticing a negative change in my lower teeth/gums that look like gingivitis with plaque buildup - even when I have my teeth cleaned (my gums were always healthy in the past). I'm seeing my dentist (again!) to check things out - I'm concerned now about losing teeth!
I'm also noticing little scaly growths on my skin, which also concerns me. I see a dermatologist every 6 months for a body scan, and I did have 2 instances of basal cell that were removed (1 via Mohs) - prior to my starting Brinsupri. My hair is also thinning and I can see my scalp - especially in the back (more than before starting Brinsupri).
So I'm happy about the benefits of Brinsupri with my lungs (reduced coughing and mucus) and would like to continue with 10 mg. but am very concerned about the side effects I'm experiencing and the damage it might do to my body.
Anyone else experiencing these side effects after taking Brinsupri for 6+ months? Are you going to continue taking Brinsupri? Thanks, Denise

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Replies to "I've been on Brinsupri 10 mg for ~ 6 months for Bronchiectasis and am 73 years..."

@phoenixrises There are two thread in this Mayo subject. Have you had a chance to read any of them. I ask because I believe some of your concerns have been mentioned in either one of the threads by others having the same problems.
Sorry to hear you are experiencing these new things...not something we find ourselves to be happy about....another something to be questioning and concerned about. Hope it subsides for you.
Barbara

@phoenixrises Hi Denise, I've just started noticing a difference in my gums. I've only been on Brinsupri a few weeks ago and have never had any problems with my gums. I do have a burning sensation if I roll my tongue over my upper gums. This really concerns me since I don't want to stop taking Brinsupri. Would you please post what your Dentist says or advises? For dry skin, I recommend AmLactin Intensive healing 15% Lactic Acid. I got it off Amazon and it's cheap and works amazingly. For, hair loss there are options that work. Stem cells (expensive but very effective), PRP, red light caps (not the cheap ones) with minoxidil. Dental and blood pressure increases are my biggest concerns. So, if you or anyone has any suggestions on gum care, I would appreciate hearing it.