Brinsupri experience after 3+ months
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.
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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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2 Reactions@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.
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.
@kathyjjb Thanks for your suggestions. My dentist who I just saw yesterday to check my teeth said I had more plaque than normal for me. He suggested brushing harder where the plaque is (e.g., bottom front teeth) and also to rinse my mouth with hydrogen peroxide. Keeping an eye on this until my next dental cleaning in September.
On a related note, the pharmacist where I order my Brinsupri suggested taking blood pressure medication to counter the increased blood pressure. I don't want to be taking additional medications (which may have side effects) to offset bad side effects of the first medication (Brinsupri). I rarely even take Tylenol, and now I'm taking Brinsupri and Nexlizet (for cholesterol), which both have their own set of side effects - when I used to (and prefer to) practice a holistic approach to healthcare.
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1 Reaction@phoenixrises Hi Denise, Thanks for letting me know his suggestions. My dentist appointment is in a few months but will move it up if needed. My blood pressure is a bit lower than normal, so if it just goes up a little, I'm okay. I feel the same as you, I rarely take Tylenol. I do take supplements. Early last year, I went to an Eastern Medicine Clinic in Scottsdale for an herbal consult and was recommended to take SOL liver and GOGO supplements. The doctor there told me for what I had, I would need acupuncture every day for what I had (Bronchiectasis and NTM with fatigue), he suggested I start with 4 of each, 2/daily and taper off once I got my energy back. Can't take the GOGO later than 12 or 1:00 PM or won't sleep well. They really helped. I stopped taking late summer and due to fatigue started back up last week and already starting to feel better. I also started listening to youtube videos posted by Reiki masters. I google Reiki Healing youtube. Or reiki masters healing youtube. Took a while to find the right one for me to listen to a few times per week. I'm also a fan of Louise Hay on positive affirmations. Kathy
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1 ReactionI have been on brinsupri for 3 weeks and I am having similar blood pressure issues. Mine was usually 110-120 and now it is 120-130. I was on a webinar presentation from the European Forum on Respiratory Tract Infections and Dr Chalmers stated there was no reports of blood pressure issues during the clinical trials. Interesting. I wonder if there is a place to report these side effects?
That’s strange because when you read the brinsupri brochure, increased blood pressure is listed as one of the side effects.
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1 Reaction@crepass
I actually had to stop taking Brinsupri after 3 weeks as my blood pressure skyrocketed! I have had HBP for many years and have successfully been treated for it, but Brinsupri really raised it into the 150's, 160 range. Prior to stopping, I did feel positive effects in both energy and breathing so I was very disappointed to have to stop.
@brettdf Sorry to hear about the increased BP on brinsupri. Did your doctor consider raising your BP meds before discontinuing?