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Posts (104)

1 day ago · Have to start the big three in MAC & Bronchiectasis

@jkiemen Jo Ann, I had flu-like symptoms from Rifampin and was taken off it. Later I tried Rifabutin which I tolerated fine so that was added. Don’t worry about what your doctor thinks of you. The side effects are real and they are not always something to be powered through. They should not be ignored. While these meds are attacking the infection they can also attack the good things in your body. It’s a form of chemotherapy.

4 days ago · Question regarding symptoms in MAC & Bronchiectasis

@heathert Yes, it is doing it’s job and I feel much better. Thanks! How are you doing?

4 days ago · Question regarding symptoms in MAC & Bronchiectasis

@windwalker Hi Terri. Today is day 4 of Prednisone and feeling SO much better! Normal I would say. Also, I’m glad to know the feeling bad was legit and that it wasn’t just allergies that I had to live with. Hope it holds after I finish the prednisone. How are you doing?

5 days ago · Have to start the big three in MAC & Bronchiectasis

@jkiemen I had muscle aches. It takes your body awhile to adjust. I’d call the doctor about the palpitations though.

6 days ago · Great source for MAC (NTM) information is,,,, in MAC & Bronchiectasis

Good luck! I hope this does the trick for you and I’m excited to read your updates.

6 days ago · Question regarding symptoms in MAC & Bronchiectasis

@windwalker and @heathert Thank you for your responses. I will keep this in mind. I do almost all my shopping online so no worries there. We use unscented laundry detergent and no dryer sheets so good there. Amazing all that I have to consider these days. Mainly, though, I am in the house or outside so it could be something in the outside air. It’s sort of our Fall here (southern US) so lots of vegetation is dying.

The doctor called in some prednisone for me to try to just knock this out. I’ve only been on it one day but I think my lungs feel better. Could be placebo effect. We’ll see. I think I really need to get off my butt, start working out, and get out of this ‘sick mode’. So easy to fall into it when not feeling great.

Thanks again for your input. I appreciate it.

6 days ago · Have to start the big three in MAC & Bronchiectasis

Hi @rosecurran I remember the confusion when I was diagnosed last year. I was diagnosed with MAC, bronchiectasis and a couple of cavitary lesions (holes in the lungs). I’ve been a runner and a former triathlete and have always been super healthy so I was floored! I can only speak for myself as I am definitely no expert on this disease.

Was your mom also diagnosed with Bronchiectasis? After research, I learned that while the MAC infection can be arrested with the meds, bronchiectasis is with us forever.

I was put on Clofazimine because I didn’t tolerate one of the meds. So, if she is tolerating the 3 meds okay, I doubt she’ll take that.

For myself, I did nothing special. I took the meds and did my lung clearance (which is for life if a person has bronchiectasis) and tried to get some exercise because that is good for the lungs. Because of the cavitary lesions I also was put on a drug called Amikacin, first by IV with a PICC line and then inhaled. My first sputum culture after 3 months came back negative and all sputum cultures after that came back negative also, although that is not the case for everyone. I stayed on the meds for a total of 15 months.

I have been off meds since April this year and doing pretty well. Started working out again although lately I’ve been rather lax (note to self: get back to it). Right now I’m going through some sort of little thing but lungs look no worse so I take that as a win. I am still adjusting to my lungs never being ‘normal’ and trying to be satisfied that there have been no negative changes in my CT scans.

So, all in all, it is a long learning process and a new normal. I just turned 63, by the way and was 61 when diagnosed. I’m sure others will chime in here. Best to you and your mom.

Tue, Dec 5 7:47am · amikacin question in MAC & Bronchiectasis

Can’t remember the saline amikacin concentration but I did lose my voice totally for a couple of weeks. It came back but remained hoarse until I was off it.