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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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@tolepainterWhat techniques and meds are you using for airway clearance. Also, what’re your sputum cultures growing? Hope you find answers soon.
@tolepainter I’m now in my sixth month of Brinsupri. It was slow, but gradually I’d have a good day, and after several months started stringing the good days together. I still can have a bad day, but I bounce back. I’m also doing manual air clearance twice daily, and nebulizing 7% saline twice daily.I was advised at the onset to be diligent of any foods that increased mucus…for me it was dairy. Specifically ice cream, Greek yogurt which I had daily and milk. Just switching to dairy alternatives on those three things was a game changer for me. For other people it can be entirely different. Fats in moderation such as cheese, French fries etc do not trigger me, nor does caffeine. But it does for others. My cough is non existent except after my nebulizing and clearance but minimal at that.Good luck to you.Jeanne
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1 ReactionI too wonder about airway clearance for those coughing to the degree of exhaustion. For me, and as stated by my pulmonologist, exercise is essential. He says you have to even if you don't feel like it. I do yoga and breathing exercises and walk every day and ride my bike when I can. Also essential is mucus clearing by using sodium chloride twice a day in a nebulizer and then using a device or having someone do chest percussion. And getting into a position like down dog and huffing. You have to get the mucus out. I was diagnosed with BR and MAC almost 20 years ago. I did the MAC treatment once, and another NTM twice. ( Have you been tested for NTM?). Since I have been doing all the daily work, my worst coughing ( i.e. for hours, to wondering if you can die from it) is a sign of a BE flare-up and needing an antibiotic to beat the usual BE bacteria down. This almost always has happened to me after a cold virus. Another important issue is airway irritants which cause more inflammation, coughing, and mucus. Smoke, strong perfumes, laundry chemicals, a gas stove- - what do your lungs react to in your environment? ( I can no longer read library books unless brand new because of the fragrances from other readers. Brinsupri seems to be a long term drug to address the inflammation, but it meanwhile isn't a replacement for the daily tasks of exercise, working on getting the mucus up, and avoiding airway irritants. Over time I will see if Brinsupri makes less inflammation and mucus. I'm not liking the skin issues and I'm watching the elevation of liver enzymes.
@tolepainter @char1234
Super essential to continue airway clearance while on the drug. Brinsupri does not replace airway clearance.
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3 Reactions@ingrid1947
Thank you - your input has been very helpful
@heidi0974
Great input to consider. I do enjoy my yogurt and cheeses. I have found the drinking pineapple jouce and eating pineapple seems to help.
@char1234 I have been on Brinsupri 6 months and have hair loss, my skin tears easily even if I slightly bump something, several spots on my legs and going to dermatologist this week, bruising on my legs which I attributed to the compression hose, doctor said no and I now feel this is caused by the medication. Stopped the compression hose but still have bruising. The skin on my face doesn't look the same, noticed tartar on my teeth. I'm 82 and have had bronchiectasis for 20 plus years and lived all these years without Brinsupri, I will probably stop the medication, I see my doctor this week. Three weeks ago I learned I have MAC and started the 3 antibiotic regimen and side effects worry me. Two months ago I had pseudomonas and was treated. N
@anniegirl0903
Welcome to Mayo Connect! Hope you find it a supportive place.
I'm sorry to hear about the side effects you've been dealing with, as well as your recent MAC diagnosis. That sounds like a lot to manage at once.
Have you ever taken, or are you currently taking, any type of steroid medication? Easy bruising and skin tears are fairly common side effects of steroids, particularly when they are used for a long time, even at lower doses. As we get older, the skin also becomes more fragile, which can make bruising and tearing more likely.
With Brinsupri, the symptoms you describe, other than hair loss, are not generally considered common side effects. That doesn't mean your experiences aren't real, but it may be worth looking at other possible contributing factors as well.
@scoop I have been using Dulera inhaler for several years and over the past years other inhalers. Perhaps, as you noted, the bruising could be due to these steroids.
nice to know I am not alone called Amber pharmacy and the pharmacist I talked to said she hadn't heard of bruising problems which I found unbelievable. That said I too am wondering if staying on brinsupri is right for me. I was told I had bronchiectais back in 2014 but think I had it years before just never found a doc that knew about it. Was always treated for sinus problems
going to see a new doc next month who specializes in bronchiectais hope she can come up with something to help the cough