MAC Big Three Side Effects

I'm so sorry to hear about your eyesight! That's just terrible. I have had great eyes at all my life, when I turn 50 I just start wearing reading glasses, but otherwise I see pretty darn good so I'm hoping that I don't get any vision or hearing problems. I need to see both, I just got done with surgery though so I haven't even made an appointment yet. I probably will this week so I can get in and get the baselines done.
I started on the azithromycin and the Ethambutol and then he wants to put me on an inhaler. How long did it take before you start having eye problems that you realized? Again I'm really sorry about that. I hope all your cultures stay negative! Thank you for the helpful info
Angela

To answer your question if anyone else is in Florida, I am and have been here 13 years a transplant from NH. I was diagnosed in Feb 2022 and started the big 3 for mac in Aug 2022. Florida is one of the worst states for mac.

That’s exactly what I have found out too. And there was a push to get funding in FL for research being there are more cases here than any other state but it vetoed by the current governor. I am also actively looking for trials or studies and there are a couple of places in FL (Tampa and Miami)that specialize but i am too far from either to be accepted.
I assume my pulmonologist will start me on the “big 3” when I see her next week. How are you doing on the drugs? Do they test you culture test you every 3 months? How are the side effects?
Thank you so much for answering!

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 saw my eye specialist last week and failed my 2nd field eye test and she took my off ethambutol immediately. My infectious disease Dr concurred the following day as I already had an appointment with him. Now I have to see Specialist for glaucoma as ethenbutol can give you it plus my mother went blind from it and it is passed from mother to daughter. But this is suppose to be rare so don't stop taking the ethambutol because of this unless you also have a problem. Good luck, I had my first negative culture last month so it isn't all bad.

That’s great news you have had a negative culture. It’s too bad you have to go off the ethambutol but better safe than sorry about glaucoma. This is certainly not an easy journey and it sounds like everyone suffers in different ways from both the MAC and the treatments.
Good luck to you as well. It seems you have a good team of doctors that are making quick decisions for you-that’s important that you don’t have to wait days or weeks to make changes to your treatment. I’ll watch for your updates on here.
Thank you for the positive encouragement.

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.

I am so sorry to hear you have mac again. Florida just seems to be a breeding ground for this illness. I had my first negative cultures and waiting to see if the last ones are OK as well. If so I still have another year of meds but hope that will be it. My worse fear is it will come back. I hope you the best and I do agree that you need both drs.

I am on the big 3 but last week I failed my second eye field test so my eye specialist took me off ethambutol immediately. I space the meds out in 2 to 3 hr times and it helps with nausea but sometimes I still have to lay down for 20 to 30 mins. I have never had the weak feeling but everyone is different and I stay very active, golf, bowling, bocce, gym, and shuffleboard. I did have diarrhea bad in the beginning but had IBS very bad for over 30 years so am prone to that. Good luck and stay possitive.

Curious to know what weird pneumonias you have had
I believe I m MAC free after prolonged treatment but now have pneumonia for which no reason has yet been found
Would appreciate knowing which organisms, if you recall