What side effects did you have? Just curious. And how are you doing?

I'm doing better now, I have some moments that I'm down and stomach cramp. With the help of God and all of you in this forum I'm doing much better than when I first got the diagnosed. I remember I think we almost start the same time about our meds. I'm glad you are doing great. I'm still learning about how to space my other pills that I'm taking. My acid reflux is out of control, my Dr. tells me to take it at night. I have to take empty stomach 1 hr. before meal and so the other vitamins. Thanks Sophie.

I take nexium 40 mg every morning. I wait two hours then take rafampin on empty stomach on Tuesday Thursday and Saturday. I take my other two meds on mon we'd and Friday evening around 7pm so side effects never interrupt my day. I sometimes get tingling in hands and feet and awful taste in mouth but I figure I'm n bed not ruining my day only last few minutes then wake up to a great day<br><br>

I take dexilant for my acid reflux. I take in the a.m. with my other stuff. I hope you get past your stomach issues. God bless. I will be praying for you.

The only drug I could not tolerate was Rafampin. I got a rash and felt dizzy. The other two, ethembutol and clorithromyacin had no side effects, especially after 6 years. I think the fear is worse than the actually negative effects. Very few people have bad side effects. Most people can tolerate them unless they have unusual allergies or often have to mix with other meds. Always take good probiotics and figure out what works best with your body. I know so many people have a love/hate relationship with antibiotics, but honestly, we'd all be really bad shape if they were never discovered.

cila, I SO agree your Doctor should have been more forthcoming about your meds .. what a difference it would have made in your journey! That is EXACTLY why I have educated my two granddaughters to ALWAYS get to know a female pharmacist where they get their prescriptions filled.

Why? BECAUSE doctors have SO little training in pharmaceuticals in medical school .. THEN in the intervening years HOW on earth do they keep up with all the new medical knowledge .. techniques etc PLUS new meds? A LOT of their newer knowledge comes through the latest meeting with their pharmaceutical rep!! NO WAY am I going to take a doctors advise on meds without my own "due diligence"!! Any time I get a new prescription I call DIRECTLY to my trusted pharmacist who has a list of any/all of my allergies/side effects .. and discuss the pros and cons of this newly prescribed med. Plus is there an older more tested generic med rather than the newest fancy prescribed med the latest pharmaceutical rep is pushing!

The newest meds are usually way more expensive AND less tested in terms of side effects and problems. If there is an alternative .. I have absolutely no problem calling my doctor and just merely "asking" if there is a medical reason I cannot use the older drug .. why not etc? I NEVER forget that I am in the driver's seat in terms of taking care of my own body .. I am the one who will have to deal with what ever happens .. not the doctor. Due Diligence is MY responsibility! Just my opinion. Hugs to all! Katherine

Its good to know people are having few side effects even though if you read the papers that come with the meds, you want to go and hide in a cave!!! I am praying for each of us to get well soon.

Agree completely...not with just meds but everything medical...we know our bodies best, docs know our bodies least (other than the rare few) as practices now are set up to spend very little time with each patient, and given same time insufficiency for anything but crunching patient visits, docs spend no time researching on our behalf. I've gotten much more accomplished for myself and my elderly parents' health care w/my own research than would've ever happened wo. When docs' staff ask if you're in the healthcare industry, you're on the right track!

Hi @suttonmac2009, thanks for sharing your info.Have you ever had a clear sputum or your nodules/cavitarys clear on the ct scan, or have they just been managing your mac for all these years? Have you ever become immune to any of the drugs?

Hi @heathert,
I've been clear from MAC for about 18 months. I think the Doc. is going to take me off meds this week. I went off 3 years ago and then it came back, hope this time it works. Last time I wasn't clear for as long. My Doc. feels it better to go off if things look good than to be on antibiotics for ever. The nodules have gotten smaller, although they say they usually don't go away for good. I have never become immune to the drugs.( diagnosed 2010) I had a sensitivity test last year, so it's good to know they still work. I had a recent CT scan last month so I'll go over it with my Dr. on Thursday. I'll keep you posted.