Delaying treatment question

I have had MAC for at least 10 years. In 2013 could not tolerate Big 3 and my pulmonologist in NJ had no further advice. Now going to NJH and will likely start therapy

You are very lucky to have gotten rid of MAC so soon and without any side effects. I have been on Big 3 for one year now and have suffered terrible stomach issues and diarrhea lasting for a few months no matter at what times I took the drugs or with food/no food. Now I am having debilitating body aches which everyone tells me is sciatica, but I have had sciatica before, and that pain can't be compared. Also, my tinnitus has gotten worse and if you ever experienced tinnitus, you would know that it's a debilitating condition where you can have a high pitch sound ringing in your ear nonstop and when it gets really bad no noise machine can mask it to help you sleep. Also, my eyesight is getting worse, though very slowly. It is such a blessing to knock MAC off so well and quick, but unfortunately the MAC experience is very different for different people. When people and doctors tell me, stay on the drugs, which I am now supposed to take 7x a week, I just don't see it being worth it. The only things that really makes me feel better are nebulizing 7pc saline and the vest. I am only 49 years old.

I agree with beginning treatment as soon as possible to avoid progression and eliminate the infection and progressive lung damage.

I was +2 smear positive and MAC culture +3 when diagnosed. I enrolled in a clinical trial with Clofazimine for 6 months with no improvement.

I switched to Azithromycin and Ethambutol 3 times weekly, and in 2.5 months, I was sputum negative with only a few colonies of MAC.

I await the cultures for months 5 and 6, and my doctor has recommended nebulized liposomal Arikayce be added to ensure elimination. She also said that patients who add Arikayce remain MAC free longer after treatment ends. I begin that within 2 weeks.

My doctor also told me that, instead of having to wait until being on the standard drugs for 6 months before being allowed to start Arikayce, it’s success rate has led to it being a standard part of drug treatment from day one soon. I don’t know when that will be.

It seems that the Rifampin actually lowers the level of Azithromycin. I have also read that it is responsible for so many feeling so badly on the drug regimine.

The Arikayce wipes out the MAC sooner, when combined with the Azithromycin and Ethambutol. That may mean a shorter treatment time and longer remission.

This is wonderful and promising news for patients. Progress is being made. Do what you can to protect your lungs from damage. By the time you have symptoms, it may be more difficult to treat.

Thanks so much for the information - I appreciate that very much! I'm so glad you have been helped by the treatments. I wish MAC would go out to the cosmos somewhere along with Covid and leave us alone - ha! Thanks again.

I hope it works out for you. (By the way, I'm from Ridgewood, NJ but not there anymore.) What type of therapy are they offering for your specific situation besides the Big 3? Thanks

Many pulmonary doctors don’t know what to do. NJ H was astonished NJ pulmonologists I went to never did a CT scan. I hope to find out treatment options in November

I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m going to New York City doctors who are in rolled and running centers of excellence for Bronchiectasis treatment and MAC. I went for a second pulmonary opinion to the actual head of research and same discussions same Recommendation. I did not understand it I pleaded for a little better understanding of why. I said I have physician relatives who will not understand why my doctors are delaying treatment. This second opinion doc said tell them “you are treating. The things you’re already doing airway clearance , looking into GERDS precautions, daily exercise and doing all you can to avoid further infection… These are the first line of treatment.“ This moment in time, it is literally true that the treatment is worse than the disease. In my case. Very slight Bronchiectasis. Also, in about a year this very successful trial drug will likely become available and it will be very helpful in delaying lung damage. DPP-1 Inhibitor Brensocatib in Bronchiectasis.

I hope all goes well for you. (I'm from NJ by the way but no longer there - then was in CT - but now out west - wish I had the great doctors in New York now!) I have very slight bronchiectasis too. I hope they can help you and that the new drug works out well for you if you take that. Thanks for writing. - I really appreciate it.

So I'm the same as you, no symptoms except for one night. I started coughing up blood like I mentioned above, and the reason for that was that I ended up getting Klebliessa pneumonia with the Mac. It took bronchoscopy to diagnose both. So as I was getting more and more sick from the pneumonia, in my head and in my doctor's perspective because they saw a mass on my lung (and found cancer on my intestine) I thought the end was near! You hear about people finding out they have lung cancer and then getting really sick quickly. That's what I thought was happening. As soon as they found that mass from the CT scan I gradually started coughing more and I could hear myself wheezing and coughing a bunch of crap up. That was all from the pneumonia though, and once they put me on the antibiotics it started clearing the pneumonia up and that's about the time they figured out I have Mac because it takes so long to grow in the petri dish. It takes a weeks for them to figure that out!!
Regarding how long you've had it, I was going to tell you that my cavity was pretty large. I'm not sure if you have a cavity or how big of an area is affected, but my cavity was around 3 in and my doctor looked at a CT scan I had done in 2011 and thought that I may have started developing this back then. The reason that he thought that was there was many small little nodules all in that area that I ended up having the cavity. Infectious disease doctors see this often enough where they can determine to some degree how long you've had it. He said I've at least had this 5 years, but he said he wouldn't be surprised if I've had it 10 + the nodules right in the area that I got the cavity is very telling!!!
You probably had this for a while. All depending on how large of an area of your lung is being affected. It's very slow growing. Have you had any other CT scans done in recent years they could compare? You could ask your doctor what they believe. It is slow growing so a large area would take years, small area months to a couple years!!

I am so sorry to hear about all the problems you're experiencing. I think part of the reason that I haven't had a lot of issues with my stomach, and diarrhea etc. Is twofold. I don't have colon since I had that removed at 38 from colon cancer, things kind of go right through me so I always have diarrhea. I wouldn't notice that! Good or bad. That's the way it is. But another reason, the biggest reason is because I've only been on two of the three antibiotics. I have been on azithromycin and ethambutol and started the Airikayce about 3 months ago. Have you been on that? It is supposed to be a miracle drug for people with Mac. That's what my doctor told me. If you haven't been on that, it would probably be really worth your while to ask your doctor about it. You might get excellent results if you're not getting the results you should be getting from the antibiotics. I am 52 so I am right in your age group, and I can't imagine living in that much discomfort every day. I'm very sorry to hear about that. I wish there were things that your doctor could do to make things easier for you. You. A lot of times when you are having problems. Digesting the medication, they will actually have you come down and only do it three times a week, there's got to be something else they can do to help you. Let me know if you've been on Airikayce at all? If you haven't, please ask your doctor because I think that would make a huge difference for you with clearing it up. It really works!! Once again, I'm sorry and let me know if you have any questions. I also agree with you that some people have a harder time getting rid of this than others do. I was just telling someone else that I think it has something to do with your DNA and how your body reacts to antibiotics, etc..
❤️Angela