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Posts (12)

Oct 18, 2018 · Frustrated in MAC & Bronchiectasis

Hmm…I am on the big three too, same dose, and fell four times this summer. The last time I needed stitches in my knee. I have been attributing the falls to my normal klutziness. Now I wonder if part of it may be due to the drugs. My metal hip on that side was OK too.

Oct 6, 2018 · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

I don't have any advice, but I can relate, and let you know you're not alone. My case sounds remarkably similar to yours, although my Advair is 500/50. I started treatment for MAC in May, and some days I feel fine, but other days I have very little energy. Try to stay positive, and keep walking. I also do weights and shorter work outs now so I can still keep muscle strength. It helps. I hope someone on here can help you find some options for reducing your medical bills.

Jul 26, 2018 · Extreme fatigue in MAC & Bronchiectasis

@windwalker and others, I am curious as to whether others have had issues timing taking their pills. The first four weeks I took them first thing in the morning, which meant I had to wait to have my morning chai latte. So week 5 I set up the Rifampin and a covered glass of water on my bedside table (I discovered last year that my cat was enjoying drinking from my glass during the night!), and took those two pills in the wee hours of the morning. End result, I was so sick all that week, nauseated by late afternoon, unable to eat (yet I didn't even lose one single lb.), and so tired I was sleeping 12–14 hours each night. So week 6 I decided to have my chai latte when I get up, walk the dogs, keep busy for another hour, take pills, keep busy for another hour, then finally enjoy a hearty brunch. By week 7 I started feeling much better, and although I still can only do gardening or other physical tasks for two hours before I become too tired to carry on, at least I have begun to start accomplishing some things again.

Has anyone else had to adjust their MWF morning schedule due to side effects?

Jul 3, 2018 · The psychological aspect of dealing with bronchiectasis and MAC. in MAC & Bronchiectasis

I u pnderstand! When I told my sister about it after my diagnosis, her reaction was—bearing in mind that her husband almost died from MRSA about seven years ago—“So what? I have MRSA colonized in my lungs.” Without getting emotional, I replied,”But you don't have an underlying lung disease. “True.” “And you're not immunocompromised.” (My spleen was removed in 1976.) “True.” That was the entire conversation. She seemed totally disinterested—my only sister! I was devastated.

Jun 27, 2018 · Swimming in chlorinated swimming pools in MAC & Bronchiectasis

Yes, I will request one, and now that Monday 6-25 and today, 6-27, I've been sick, lethargic, cold, with a mild fever, and have no appetite, I will ask her if we should revisit the drugs. I'm one month in. This sucks!

Jun 10, 2018 · Extreme fatigue in MAC & Bronchiectasis

I live in St. Paul.

Jun 10, 2018 · Extreme fatigue in MAC & Bronchiectasis

Terri, are you in Minnesota? If so, anywhere near the TC? I don't know of anyone else with MAC, and it would be nice to meet.

Jun 7, 2018 · Swimming in chlorinated swimming pools in MAC & Bronchiectasis

No, I don't know. This is all so new to me, having gotten all three diagnoses at once (bronchiectasis, pseudonomas and MAC at in January. She debated treating me at all, then decided to do so, noting micronodular infiltrations. This after being treated three times already for the pseudomonas in five months. One of those nodes was initially about an inch, triggering an automatic warning for cancer. That nodule diminished greatly after the first pseudo treatment. Maybe she is also considering my complicated medical history…disclaimer, I am athletic and have always been very active…of surgery for chronic ulcerative colitis in 1979, spleen removed in 1976 for ITP—an autoimmune blood disorder, numerous bouts with flu before vaccines, numerous bouts with pneumonia, RSV virus, lots of respiratory illnesses, and a history of life threatening secondary adrenal insufficiency for which I was treated in 2009. Even so, I will mention it to her when I see her in three weeks. Thanks for bringing this up.