MAC Medication Side Effects

Hi there, I cannot remember what dosage I was on but I took the big 3 on a daily basis for 14 months. I did not know much about my treatment, trusted my consultant and took the meds. Looking back I wish I knew more. I lost 2 stone in weight and was already slim. I should have taken a probiotic as had a lot of stomach issues. You might be lucky everyone is different. I would advise you to keep a diary of how you feel on a daily basis. Keep up with airway clearance I did not know this existed 3 years ago. Ask lots of questions as knowledge is power. I was free from MAC for a year after treatment but sadly it has returned. On watchful waiting at the moment. Wishing you the best of luck with your treatment. Some amazing information to be found here

@namd Thanks for the info. I have been told by multiple doctors including the one I am seeing that MAC never ever goes away. It may get better after 12 months of meds but it will always be there. Not sure what you mean regarding the airway clearance. Is that a nebulizer which I am using along with a trelegy inhaler?
If I do not get better in the 12-14 months, I will be done taking these meds. There must be tens of millions of people walking around with MAC that don't have a clue and they are not the worse for wear with it. I think it might be all voodoo. LOL

@macsucks Have you considered seeing a pulmonologist who specializes in treating MAC and Bronchiectasis?
It looks like you are taking these meds daily - does that mean that you have cavities in your lungs? Usually daily meds are reserved for severe cases, most people take them 3 times per week.
I can tell you that if my MAC is not gone, it's doing a fine job of hiding! I finished antibiotics in December 2019, and since July 2020 every sputum culture has been negative and there is no visual evidence of it in my CT scans.
I believe continued airway clearance and keeping my asthma under control has been the key.

I do see a pulmonologist and a MAC specialist.vI have no idea about cavities in my lungs. Never been told that whatever they are. Please elaborate what you mean by airway clearance.

Airway Clearance involves breathing exercises which help to clear the mucus from your lungs. You are using a nebuliser and that is a form of airway clearance.
I am not sure if I will go back on treatment. I am still working but become very fatigued that is the worst side effect of MAC for me along with the weight loss.

1600 mg of ethambutol per day? How many mg per kg of body weight? Ethambutol can, in rare cases, cause vision loss, how often do you see an ophthalmologist?

Not related to this discussion but because I no longer see Mullein tea conversation: does anyone else find mullein tea effective but distasteful? Any suggestions for making it easier to drink if you really don't care for it? I tried sprinkling in ground cinnamon and cloves but the strong tea taste prevails. Thanks.

@sma2 I just see an optometrist once a year for an eye exam and new glasses if needed. I weigh 86 kilograms so that would be about 18 milligrams per kilogram.

@snoei Not related so why did you post it? I have no idea what you are talking about. Does it pertain to side effects in some way?

@snoei Go to the top of this discussion. Click on "MAC & Bronchiectasis" it will take you to the group directory.
In the box that says "Search Group" and type "Mullein Tea" then click the magnifying glass.
You will get a list of discussions about mullein tea. Select the most recently active one and post your question there.