MAC Big Three Side Effects

Hello,
I am brand new to the site and thankful to have stumbled on it. I have had so many symptoms but wasn’t diagnosed for over 2 years after several misdiagnoses and several lymphnode biopsies. I have had diffuse lymphadenopathy since this all began. I’m scheduled to see my pulmonologist on the 24th of March to go over treatment and start. (does anyone else live in MAC breeding ground, Florida?)
My immediate question pertains to your comment of needing both a pulmonologist and infectious doctor. When my pulmonologist told me about MAC, i made a followup with the infectious disease doctor, thinking that was another layer in treatment that could be helpful. I mentioned it to the pulmonary and she told me, rather abruptly, I need to cancel that, that i don’t need to follow up with them. I found that very strange and Inintend to keep the appointment. Can you please tell me how your doctors work in tandem on your MAC? I’m thinking mine P. doctor is not going to want this joint care route-even tho both doctors are practicing at a university hospital. I have to say I don’t feel complete trust in my pulmonologist, having missed my diagnosis for so long and my MAC was actually found by my rheumatologist. I’ve been to 5 different departments with my “mystery” illness.
Thank you! I’m thankful to be a part of this community and look forward to exchanging thoughts.

I was recently diagnosed with MAC as well. It's a very scary time! My doctor started me off on the azithromycin first for 5 days, then to the Ethambutol, and will be prescribing an inhaler with some medication. I'm not sure why he only prescribed me two antibiotics and not three, although there's going to be an inhaler. I guess every doctor does things different; I see a really great doctor with infectious diseases. I believe that is what most people see who have this. My main advice I can give you is to take all your meds at the same time and eat with it!!!!! Whichever is your biggest meal of the day, if it's breakfast lunch dinner. This medication is well tolerated when you eat with it. I noticed that with the azithromycin I would feel a bit nauseous not eating. I am a 52-year-old female, and I have not had any problems in the medications so far. I've been on them for about 2 weeks. I haven't gotten sick, tired, etc. As a matter of fact I had a CT scan about 5 weeks ago and I have a pretty large cavity in my upper right lobe, it was 3.2 CM at that time and I had a bunch of nodules all over the right side of my lawn. They were going to do a CT guide at lung biopsy last week but when I went to have it done they did another CT scan and everything was clearing and that wall of the cavity had been out so much they canceled the biopsy. So I guess that was all really great signs, but my doctor said that it couldn't be from the antibiotics because it was just too soon for them to really make a difference so my body must have tried to start healing things. Anyway I really wish you luck! There's a lot of people on here that are really helpful and know a lot about this stuff. ♥️

I live in Seminole, Florida just across the bridge from the Gulf. It took two years before I was diagnosed with MAC by my primary care doctor. MAC is rare but more common in women over 60 living in coastal areas. I fit into all three categories. My pulmonologist has never explained one thing to me about MAC or the importance of using a nebulizer. I was told to get one and a script for saline solution. I even had to go online to find out how to use one. Only when I began to read comments on this site did I find what I suspected - the best I can hope for is remission. I had a chest CT scan in Dec and soon after my pulmonologist referred me to another who he said was the Guru for MAC. Only when I saw that doctor who was very straight forward while offering hope did I hear the results of my 2022 tests/scan. They showed the infection twice as bad as the year before. MAC is rare so most pulmonologists have never treated anyone with it. Personally I would keep the appt to see the infectious disease doctor. More knowledge is better than less.

When I was taking the Big 3 together with or after a meal, I had terrible diarrhea, so bad I would not want to experience it ever again tbh. It felt like everything I ate left my body right away and in a very aggressive manner and no nutrients were absorbed. A month into this and I felt drained and dehydrated. So for me, the best way is to take the Big 3 separately, one in the morning, one mid-day, and one in the evening. My diarrhea has gotten very mild compared to what it used to be and I feel so much better rn. I have been taking the Big 3 for almost 5 months now.

I live in Seminole, Florida just across the bridge from the Gulf. It took two years before I was diagnosed with MAC by my primary care doctor. MAC is rare but more common in women over 60 living in coastal areas. I fit into all three categories. My pulmonologist has never explained one thing to me about MAC or the importance of using a nebulizer. I was told to get one and a script for saline solution. I even had to go online to find out how to use one. Only when I began to read comments on this site did I find what I suspected - the best I can hope for is remission. I had a chest CT scan in Dec and soon after my pulmonologist referred me to another who he said was the Guru for MAC. Only when I saw that doctor who was very straight forward while offering hope did I hear the results of my 2022 tests/scan. They showed the infection twice as bad as the year before. MAC is rare so most pulmonologists have never treated anyone with it. Personally I would keep the appt to see the infectious disease doctor. More knowledge is better than less.

Hi arbakr @arbakr ,
Diagnosed with MAC, not sure what kind, in May, 2022, and Bronchiectasis and emphysema more than 10 years ago. Needed Chemo treatments for a breast cancer diagnosis earlier in the year which did complicate my treatment for MAC and the Big 3.
I have been on the Big 3... A, E, R,,, since October, 22 with short stints of omitting the R because of interactions to other short term meds I needed.
I have checked my eyes and hearing every 3 months and so far so good.
My side effects from the Big 3 since August have not been a problem for me so far and also interested to hear what others will say about their experiences....
PS Your urine is likely to be the color of a bright orange soda from the R that occurs for a day or two after each dose.
Please let us know how you are doing....and good luck with all!
Flo @frankie160

Thank you, yes! that was my gut reaction to my pulmonologist’s recoil at me having an infectious disease dr. followup. I’d like to change my pulmonary but I am going to a large state university hospital group of doctors/specialists so I’m not sure how I can switch out. I think
once i have the
pulmonologist’s treatment and then have the appt. with the ID doctor, I will know if i should switch over to them for the supervision of treatment. I was initially diagnosed with lymphoma, then suspected bone marrow cancer, and then suspected lung cancer. I have had 1 major neck lymph node removed which came back “reactive”, 2 broncoscopies with lung samples taken, 4 CT and 1 PET scans, I now have granulomas and lesions in my lungs and liver and spleen, every blood test know to mankind has been taken and finally 6 sputum cultures. Only 1 culture came back as positive and it was for “chimaera” strain of mycobacteria. This has been going on well over 2 years. I have always been healthy, had yearly checkups, chest x-rays, and am very active, thin, and eat healthy. I had to be exposed via soil or water as I retired and moved rurally and garden, take care of farm
animals…..etc. I’ve read the horror stories of side effects as well as the prediction of only a 30% cure rate. Even scarier is you can get MAC again after being cleared of it.
I didn’t have any known
immunity issues.
The fatigue and cough and widely fluctuating body temperature have been the worst of it for me, although my blood work has been questionable at times-iron level crashed, etc.
I don’t think I’ve fit the typical MAC profile of symptoms or an immunocompromised body condition when I was infected. I guess it just goes to show how important it is to have the right doctors do the right testing to find it because the diagnosis should not take over 2 years. Did the diagnosis of MAC lung disease come as a shock to everyone else? Was it even something you had heard of before??
I appreciate being part of this discussion and group and know I will learn so much from everyone else on the unexpected journey. Thank you all for being here and sharing.

I have been in FL since 2016. Have had MAC twice. I was diagnosed oh add in CT after a wicked 20 yr cough and endless infection. After 2yrs on the ARIKAYCE, rifampin, ethambutol, azythromycin protocol I was infection free for 18 months. I now have MAC again and am back on the protocol. In my humble opinion. Infectious disease and pulmonology are complimentary and I need both. I continue to have weird and rate pneumonias and other pulmonary issues. Infectious disease is all about sputum analysis and managing the variety of infectious in that realm. Pulmonologist helps make sure that I’m breathing as well as I can and managing flare ups.

Just sent a prayer up for you. That is so much to deal with and have on your mind. The last thing you need is a doctor acting that way. May God bless you

Thank you! I see my ID on April 3. I'm assuming I'll get started then. Meanwhile I had my first immunoglobulin G infusion yesterday. Keeping life interesting!