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Visit to National Jewish Health in Denver, CO
MAC & Bronchiectasis | Last Active: Apr 29 7:16am | Replies (152)Comment receiving replies
@pmuzsmithcscom24 You told us "He is very pro Brinsupri because he helped develop it. I am not sure..."
I know everyone was very excited to finally have a drug to treat our disease instead of just the resulting infections, and we all hoped it would be the "miracle" to stop progression.
I share your uncertainty, had a long conversation with my pulmonologist about it, and she is very conservative about prescribing it.
What she said was that it was tested on a group with frequent exacerbations requiring antibiotics, but now it seems doctors are prescribing it far more widely. This concerns her until the long-term effectiveness side effects are known.
Her second statement surprised me - she said the in-depth test literature actually showed the lower dose (10mg) to be more effective than the higher one, but that it seems like most docs are prescribing 25mg, which has more side effects. As of December, she had only used it for 2 patients, each of whom had unstable bronchiectasis with over 8 exacerbations in a year.
I like conservative measure for new meds - the clinical test groups were fewer than 1500 people (1900+ in trial- 1/3 got 25mg, 1/3 got 10mg, 1/3 got placebo) for a year, and excluded people with NTM, COPD and some other health issues.
Do you meet the criteria for frequent exacerbations? Do you have MAC and take the antibiotics for it?
Replies to "@pmuzsmithcscom24 You told us "He is very pro Brinsupri because he helped develop it. I am..."
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@sueinmn Yes in talking with scoop I mentioned that if I start Brinsupri, which in my mind according to who they (Insmed) stated it was for, I would start out with the 10mg to see what it would do for me.
I didn't want to hop on the train when suggested by two pulmonologist I consider starting Brinsupri. I wonder if our local pulmonologists hear about a new medication and without reading all the reports and medical journals about it just think it's for anyone with BE and begin prescribing it....or know the information....but think it best for their patients to start/try it.???
I thought it wasn't for those who had an infection but only for those without infection but have many exacerbations???? I have MAI and have not had an exacerbation so according to what I thought Insmed states and who they say it is for...it wouldn't be me.
Looking forward to the information that NJH will eventually put out after a period of time and the results they are seeing from the different pulmonologists in the approved Centers of Care. I believe I heard Dr. Daley say he is receiving the information from the Centers of Care related to those started on Brinsupri. I would think it will tell us how those are doing with a MAC infection, no MAC infection, having or not having exacerbations. No matter who is gathering the data it will help us to better understand all when it is ready to be published.
Thanks Sue for all info.
Barbara