Brinsupri experience after 3+ months

Posted by scoop @scoop, Jan 2 10:34am

Brinsupri may take 3–6 months to reach full effect.
Please use this thread to share first-hand experiences only if you have been on Brinsupri for 3 months or longer.

To keep this discussion useful and focused, let’s limit comments to actual outcomes, side effects, or changes you’ve observed after at least 3 months of use.

General questions, early impressions (< 3 months), speculation, or unrelated discussions please post in a separate thread.

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

Profile picture for crepass @crepass

I have been on brinsupri for +6 months. It has made my qol so much better. I will be going in for ct and pulmonologist f/u in april. 2 mo ago, I did notice my bp increasing with mild to moderate h/a. My pulmonologist said to go to pcp. I couldn’t get into my pcp, so went to another doctor who said to record bps and h/a occurrences. Next week i will see my regular pcp. I am concerned because My bronchiectasis has certainly improved and am hoping there is a “fix” for the headaches (mostly mild but present) and the bp(130s-140s) - my range previously was always 110-120. I am 67 and am curious how many others (statistically) are experiencing the same.

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@crepass I had the same problem. My BP was always low like yours. I have had to work with my PCP and try different meds but now it’s back under control.

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My BP was trending up about 9 months before Brinsuoroi and after 2 months on it it went up to ≈150/80-90. In January it started trending down to 140-145-80-90. It took some diddling with the BP drugs. This is just my experience, so who knows?

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Profile picture for scoop @scoop

@brettdf Sorry to hear about the increased BP on brinsupri. Did your doctor consider raising your BP meds before discontinuing?

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@scoop
That's a good idea, but, no, doc did not suggest that. Only suggestion was to try the 10 mg instead. As I am having other ongoing health issues, I decided not to do that, at this time. Also, is the 10mg worth it, given the side effects?
I did just check the glossy brochure I received on Brinsupri and HBP IS listed as a side effect.

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Profile picture for brettdf @brettdf

@scoop
That's a good idea, but, no, doc did not suggest that. Only suggestion was to try the 10 mg instead. As I am having other ongoing health issues, I decided not to do that, at this time. Also, is the 10mg worth it, given the side effects?
I did just check the glossy brochure I received on Brinsupri and HBP IS listed as a side effect.

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@brettdf According to my pulmonologist, the 10mg dose is as effective for most people as the 25mg dose, but with lower risk of side effects. She uses it rarely, but only the 10mg tablets.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@brettdf According to my pulmonologist, the 10mg dose is as effective for most people as the 25mg dose, but with lower risk of side effects. She uses it rarely, but only the 10mg tablets.

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@sueinmn
Good to know! Thanks!

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Hi:
I have been quietly following this thread. I have been on the 10 mg of brinsupri for four months now. I have not seen a rise in blood pressure at all, mine has been running 120 to 130 with no bp medication. I thought I had a lot of hair fall out at first but that has stopped. Im a little concerned that I had a couple cavities at my last visit and my dentist said my teeth seemed to be demineralizing. My pulminologist wants me to increase to 25 mg because my lungs havent improved that much. He thinks my asthma is the bigger problem though and wants me to go on the tezspire injection for asthma, which I plan to try.

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Has anyone tried Mullein tea? its a holistic tea for clearing lungs? diagnosed with my bacterium avian about 4 months ago along with diabetes. currently im on an inhaler for morning/evening and nebulizer morning/evening with 7% saline but im researching for holistic ways as well.

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Profile picture for rockinkranch @rockinkranch

Has anyone tried Mullein tea? its a holistic tea for clearing lungs? diagnosed with my bacterium avian about 4 months ago along with diabetes. currently im on an inhaler for morning/evening and nebulizer morning/evening with 7% saline but im researching for holistic ways as well.

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@rockinkranch Many have talked about Mullein.
If you have time go to the sections called " search discussion " and type in Mullein. You will find specific threads here on Mayo where others have discussed Mullein Tea.
Barbara

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Profile picture for blm1007blm1007 @blm1007blm1007

@rockinkranch Many have talked about Mullein.
If you have time go to the sections called " search discussion " and type in Mullein. You will find specific threads here on Mayo where others have discussed Mullein Tea.
Barbara

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@blm1007blm1007 would like to hear more Mullen tea

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For those who were told to stop taking Brinsupri by their Drs (due to side effects), were you told to taper it down or just stop all at once?

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