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4 days ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.

4 days ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@macjane I have not taken it. Can they change you to something else? Why do you take it?

Thu, Jan 10 8:48pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@1065408 I believe both Clarithromycin and Azithromycin would interact with most Antiarrhythmic medications because of the QT interval prolongation effect. Is it constant or intermittent? I think the only way they would be able to use something else would be to have you start one like that in the hospital while they can monitor you and determine if the interval stays in a reasonable range. Maybe Azithromycin would be preferred over Clarithromycin but still would need to be monitored closely. There are other similar medications like Propafenone and Sotalol, Tikosyn but they have the same risk. But you would have to see a Heart Rhythm MD called an Electrophysiologist to help out with this.

Thu, Jan 10 5:33pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@sallykuni I have had to get my glasses changed once since being on the BIG 3. I am glad your CT is looking better. I am on month 13 of the treatment. In March I have a follow-up CT. We continue to pray for better treatment options. Since MAC is so slow growing it is so slow to treat. So right now we are stuck with the BIG 3.

Wed, Jan 9 6:02pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@xfirerose I have had 2 bronchoscopies They sedate you and numb your throat. I don't remember the procedure at all. I did have a sore throat for a day afterwords.

Fri, Jan 4 8:38am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@dglaude I forgot to mention. I take Jarrow's Plus Probiotic and yogurt every day.

Fri, Jan 4 8:38am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@dglaude I have been on the BIG 3 since November 2017. I have not had too much trouble with them. I take them on an empty stomach. One hour at least (usually more) before meals and at least but usually more than 2 hours after a meal. I plan to stay on until June 2019 when my 18 months will be completed and depending on how my next CT looks.