MAC antibiotics and side effects

Hi Sue,
My latest labs indicate I have pseudomonas. I had a bronchoscopy this week Results showed 1. Bronchiectasis and inflammation of airways
2. Mucus plugging . My dr showed a a sizable vial filled with yellow mucus. She is basing all this on the need for antibiotic treatment. I am not totally confident my dr is well-versed in BE and MAC. I just viewed lab results from mucus sample taken during the bronchoscopy. It said "MTB Complex Not Detected" ... but doesn't it take a few weeks to get final results? Last year I was told I was positive for MAC. I do not understand the other lab results taken but they were all well outside of the standard range.
On a brighter note: Cedars Sinai is here in Los Angeles. It has advanced lung disease experts and I have decided to go outside the Kaiser system and get a second opinion from one of their pulmonary doctors. Needless to say, I am quite overwhelmed by all of this and trying hard to keep my equilibrium.

Breathe a sigh of relief. The treatment for pseudomonas is much shorter than MAC and uses a different family of antibiotics. I beat it back in 2 months with 3 courses of oral meds and one month of inhaled Tobramycin. As far as I know it has not returned since 2018.
That is a bug you want out as it causes nasty pneumonia if it becomes chronic and deep seated.
Yes if they send your sputum for a culture it takes 6-8 weeks to find out if there is NTM. The report says they didn't see tuberculosis (Mycobacteria tuberculosis).
I absolutely agree that if you are not comfortable with your doc's expertise you should be seen in the Cedars Sinai system. I was lucky that my ID doc had a working relationship with NJH, so I felt well cared for.
But if the labs show pseudomonas , maybe consider starting treatment while waiting for a new appointment?
Sue

The first indication that I knew something was not right was the fatique. It took two years to be diagnosed. I took the ‘3’ for three years. No one ever told me that one of the three would affect my sight and one would affect my hearing. I see my optometrist regularly and he knew which one affected my sight but after three years my hearing has taken a huge hit. My sight - now corrected it is 30/20 which I was assured is still not bad. However I cannot hear anyone sitting 3 feet from me now. I would recommend you get baseline tests before beginning the big 3.

Was on clofazimine for three years and did have the skin discoloration, extreme driness. Lots of sun proof clothing, moisturizer.
Most comfortable top in heat was from Kerrits. Heavy duty drug store moisturizers worked Ok
Everyone said how well I looked with the color as I’m usually pale. Shows how stupid it is to comment on people’s skin tone!
If you stop the medication make sure to continue sun protection for the months it will take to leave your system.
If the hair loss is bothersome you could try tiny amounts of oral minoxidil from a dermatologist- works for many over the course of a few months

Sue, your comments are always so thoughtful and helpful. We appreciate your mentoring immensely.
I was wondering, you mention that your condition/symptoms have been stable the last few years, do you have regular sputum cultures? How often? And do the cultures still show NTM/MAC? Thank you if you want to share.

Breathe a sigh of relief. The treatment for pseudomonas is much shorter than MAC and uses a different family of antibiotics. I beat it back in 2 months with 3 courses of oral meds and one month of inhaled Tobramycin. As far as I know it has not returned since 2018.
That is a bug you want out as it causes nasty pneumonia if it becomes chronic and deep seated.
Yes if they send your sputum for a culture it takes 6-8 weeks to find out if there is NTM. The report says they didn't see tuberculosis (Mycobacteria tuberculosis).
I absolutely agree that if you are not comfortable with your doc's expertise you should be seen in the Cedars Sinai system. I was lucky that my ID doc had a working relationship with NJH, so I felt well cared for.
But if the labs show pseudomonas , maybe consider starting treatment while waiting for a new appointment?
Sue

Hi Sue, for the first year I had sputum cultures every 6 months, and they were positive. At that point the ID doc and pulmonologist suggested we rely on an annual CT and symptoms, since there was no plan to treat.
I recently asked if we should do another culture "just to be sure" nothing else is there - I am waiting for a reply.
Sue

hi Sue, I’m finally seeing an ID doc end of this month. I have slight bronchiectasis and MAC. I have endless white/clear sputum. it gurgles in my chest and easily comes past my esophagus all the time. I barely need to start my autogenic drainage, it’s just always ready to be expelled. I do saline nebulizing after a quick albuterol dose every day just in the hopes that the saline is killing some bacteria. This has been my story since November diagnosis. I am 65 and very athletic, my oxygen saturation is excellent. I have two lines of thought. I wonder if you can help me work through. 1) I am leaning towards diving into the big three protocol with fingers crossed, and a hopeful attitude that I will be a lucky one and sail through without terrible side effects. this decision is being prompted by my understanding that chronic inflammation is a terrible enemy in this fight. do you think I am balancing my considerations intelligently? And, 2) when I do my airway clearance, at the end of the saline dose, I’ll extend my expelling time with autogenic drainage and push this whole process close to an hour. This easily produces a half a cup! Then, I just get bored, distracted, fed up and walk away. I’m good for the day, as far as not needing to cough, which has been a godsend. But I am constantly producing all day long, and either subtly or not so subtly expelling it. I’m starting to think I should have a marathon session and just keep going with the autogenic drainage… Is that crazy? To sit for hours and just expel expel expel? Thanks as always for your insight!

So very sorry you are experiencing these awful side effects.  I experienced the same thing.  Ended up in the hospital with severe nausea.  Waited a month....tried them again. Same thing.  That was last May,2015.  Perhaps you need a second opinion as some Lung doctors take a wait and see approach.  I am still not taking the drugs.  I see a new MAC Specialist tomorrow at Emory/Atlanta and am praying for a good report.  I applaud people who can tolerate the drugs, but my body simply could not .  Get a second opinion. Blessings!! <br><br>