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Brinsupri follow-up

Posted by scoop @scoop, Sep 29 12:21pm

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?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

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rmoore901 | @rmoore901 | 2 days ago
In reply to @kpger "My pulmonologist didn't think it had anything to do with the medication, so I called my..." + (show)
Profile picture for kpger @kpger

My pulmonologist didn't think it had anything to do with the medication, so I called my eye dr and was able to see them Monday afternoon. What I actually have is a macular hole. l've been referred to a retinal specialist and will schedule surgery to repair it. Keep us posted! I'll let you know if I find out anything different when I see the specialist.

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@kpger sorry to hear about the macular hole. While unlikely to know the cause your post caught my attention as I just found out I have a retinal tear. Not the same thing but coincidental. I’m not on Brinsupri but do use a vest along with nebuluzing and airway clearance. I stopped the big 3 in July so other than an inhaler, no other MAC meds currently. Are they doing laser surgery for you? Did they go over any restrictions post surgery or to avoid possible recurrence? Wishing you quick recovery.

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pacathy | @pacathy | 2 days ago
In reply to @kpger "Today is the beginning of my 4th week on the medication. Yesterday at work I noticed..." + (show)
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Today is the beginning of my 4th week on the medication. Yesterday at work I noticed that I was having trouble focusing on my computer monitors. I brushed it off until this morning at church I noticed that my right eye is very blurry. I've been trying to dive deeper into the uncommon side effects, but beyond AI I'm having trouble finding them. I did see a blurb about Mayo reporting vision issues but I can't find any articles to back this up. I'll let my pulmonologist know tomorrow and happily take myself off of it to see if it clears up, as well as schedule an eye appt. I just saw the eye dr 3-4 months ago and got new glasses. And no, I haven't noticed any issues with the new prescription until these last few days.
Anyone else experiencing anything not listed as a common side effect?

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@kpger Is your blood pressure ok? Hypertension is listed as a side effect. Hypertension can cause blurry vision if it gets too high.
Just a thought. I imagine you'd have headaches, too, if it's too high.
Let us know what they decide.

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pacathy | @pacathy | 2 days ago
In reply to @rosb "That's a great idea. Been on it for almost 2 months and have noted great improvement..." + (show)
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That's a great idea. Been on it for almost 2 months and have noted great improvement with no side effects. What is most encouraging is that my energy has improved a lot, the incessant coughing is much improved and mucous production far less. Let's keep hoping that it continues to work.

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@rosb Welcome!. I see this is your first post. Thanks so much for sharing your good response to the med!

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