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Replies to "Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE..."
MAC & Bronchiectasis | Last Active: Sep 29 2:26pm | Replies (15)
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Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE you have little to lose. If you develop side effects the drug can be stopped and if I understand correctly side effects reversed. Side effects in clinical trials were quite minimal, 3% or less.
I have the same issue as you with the vest. It gave me rib pain and random spasms throughout the day in abdomen. It's sitting there unused. Could NJH use it? I do not have experience with Volara but have heard positive feedback. If it weren't for the Brisupri I would pursue Volara or its competitor Wave something or other. Fingers crossed with Brinsupri.
Replies to "Completely off topic -- have you discussed with your doctor starting Brinsupri? With MAC and BE..."
@scoop Are you taking Brinsupri now? If so, how is it going?
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@scoop Thanks for the comments. Yes, my doc and I discussed Brinsupri and I'm expecting the first order to arrive tomorrow. He said that it's unknown if the med will help with the MAC but NJH is going to study it. Seems like everyone who wants it now can get it. I'm looking forward to hearing about everyone's experiences on it. My understanding is that it decreases sputum production. But I still need to get up stuff that's down there harboring bacteria, right? Hence the possible need for Volara.
I asked if I could donate the vest to NJH to give to a Cf person or anyone who needs it who doesn't have insurance and they said yes, they could take it. I don't get up there very often but if I can't find anyone local who wants it I'll take it with me next year when I'm back in Denver.