Non-TB MAC and bronchiectasis

BTW, does UCSF (or Stanford) also have a group such as Mayo has which allows patients to interact? Mayo provides a great service by having this online interaction and support among patients.

I can understand the benefit of exchanging ideas thru the Mayo system vs. thru a support group that might be offered by Sutter Health, Stanford, UCSF, UCLA (for CA residents) to ensure more privacy for the communications.

@bayarea58 Thank you for your reply. That's very helpful. I guess I'll just stay with Stanford. I'm in Oakland and am able to see Dr. Marmor in Emervyille. I did have good experience when I had an exacerbation, I was able to speak to someone on the phone and get antibiotics right away.

I'm quite curious about going to NJH. If you don't mind my asking, how does that work since you are in the Bay Area? Do you fly there for an appointment or get video appointments? What do they do differently than what you get at UCSF? If I'm being too nosey, my apologies

They have not recommended a local Pulmonologist, probably because of the MAC as that seems to be a specialty within a specialty from my last 3+ years experience. It sure would make things easier though!

@bannef UCSF has "bronch connect" which has monthly zoom meetings with speakers, etc. All Bay area residents I believe. Not sure if you have to be a patient at UCSF? I might be able to find out.

@leisa Thank you for your input. IF you see a pulmonologist at UCSF (but live a distance from UCSF), do you also have a local pulmonologist for urgent matters?

@sallieb Which antibiotics did Dr. Marmor prescribe for you, if I may ask. When I had my first (and to date my only) BE, I was prescribed Doxycycline (which I had to stop due to a side effect). I asked the NP which other medication could I take for the BE. She said The NP mentioned Brinsurpri but did not order it for me. Are there any other medications you were prescribed that were effective when you had a BE attack? attack?

@leisa I am guessing you now have or had MAC?? if so did you take the 3 usual antibiotics for MAC and tolerate them? If you had one or more of the "top 3" that were not tolerated, what other medications did they give you for MAC and were you able to endure the regimen for the whole time?

@bannef Brinsupri is not used to treat an exacerbation!, but long term use is intended to reduce the number of exacerbations you get.
When you had to stop the doxyccline, did you press the nurse to notify the doctor or PA and ask for an alternative medication? One thing is certain with this disease- you must be your own advocate. That often means being pushy with providers and their staff .

Has your recent exacerbation cleared up?

Thank God, my first (and I pray my last) BE cleared up after 2-1/2 months of coughing which was exhausting; was too tired to drive 120 miles rd trip to see the N.P. so resorted to video mtg. with the NP. who suggested Robitussin cough medicine (which subdued the cough for about 1-1/2 hrs.). On a subsequent video call, the NP mentioned Brinsurpri but (a) my Plan D does not cover it (b) in reading up on it, I don't think it prudent for me to consider taking it since I read it is taken daily. If I were to get frequent BE's it might be worth the risk of the side effects. BTW, I plan to switch my Plan D choice to one that will cover Brinsurpri in case needed. NET: AT PRESENT, I do not have an ACTION PLAN given to me by the NP who discusses with the pulmonologist. Can you suggest any other medication that I could look into (and then discuss with the NP) IF I can a second BE? BTW, my pulmonologist recommended I get a Local Pulmonologist who I could turn to for emergencies. I identified one who is close to my house in san jose but because I saw another pulmonologist in the same office 5-1/2 yrs ago for asthma, the clinic coordinator told me I cannot see Dr. X who I have read treats a LOT of patients with Bronchiectasis and MAC. fyi, am submitting sputum samples quarterly to see if MAC shows up close together. Can you suggest other medications in case I get another BE?