MAC Big Three Side Effects

Hi, my pulmonologist sent me to an infectious disease Dr and he is great. You really need both. Mine was first suspected from a CT scan and them confirmed with sputim cultures. I was possitive for 4 different ones. Have been on the big 3, 3 times a week since August 2022. My last cultures were negative and so far the present ones look like they may be also. If so, I can get off the meds in a year. However, last week I failed my second field vision test so they had to take me off ethambutol as it could be causing my eye problems that could lead to glaucoma. This is rare so don't think you will be headed for this diagnosis. Everyone is different. Good Luck!

My eyes have really bothered me a lot since being on the 3 meds for MAC. Looks like I might have to make some changes. Six months on the meds, and NO changes for the better; none, but at least, no worse either.
I have extreme fatigue and get very weak, but I don't know if it is from the MAC or not. I was fighting this for nearly 2 years before they discovered the MAC. No idea how long I have had it before they realized it.

Anyone have ideas for the weakness/fatigue? It puts me to bed every single day; sometimes 3-4 times. As you can imagine; this has gotten pretty tough to deal with. Thank goodness I have a wonderfully patient husband!!

Oh, wow. I'm so sorry your eyes are bothering you. This has been one of my biggest concerns.

I have had fatigue for quite some time. I haven't started treatment yet, so I think mine is from MAC. It's not what I'd call extreme fatigue, but I go to work then crash as soon as I get home. I haven't felt like participating in my usual activities. For quite some time I'd thought it was depression. Now I think it's because I've been sick and didn't know it.

I start my immunoglobulin G infusions tomorrow. I see my infectious disease doctor for the second time in about three weeks. I'm assuming that's when she'll start me on the MAC meds.

Just sent up a prayer for you. I pray things get better for you soon.

Not so much immunity issues, it’s because of our identical body frames. We fit the “classic” description of middle aged, tall, thin female with kyphosis and scoliosis who are most prone to get MAC. She was ahead of me in dx and tx and got eye problems from ethambutol. So my doctor stopped my tx at 6 months since being identical twins, I would get it too. After 3 years I wasn’t doing well, so he started me on them again with the goal of one year. Probably tmi, but it’s nice having this site where we all understand what each us us are going through and can get support.

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.

Hi. That kind of sounds like defensiveness to me? My pulmonologist found it, but referred me to ID to treat it. Actually, my pulmonologist's nurse practitioner found it. I feel most confident when physicians do referrals. Some seem too proud. I like it when they're humble enough not to try to do everything themselves. I'd keep my appointment with ID. If it makes your pulmonologist unhappy, I think I'd get another pulmonologist. I don't know how close you are to them, but I'd sure consider it. Best wishes to you, and God bless you.

Agree. I have both types of doctors as well. I'm so happy for you that you're negative! I pray you continue on your way without the ethambutol. That is one of the many side effects that has concerned me. My ID did tell me it's rare, but I'll keep a close "eye" on it 🙂 I just really want to be able to keep working. I'm a 57 year old nurse in a busy unit, which is hard enough without being sick. I hope to feel like doing more of the things I miss doing as well. I get my first immunoglobulin G infusion tonight, so my mind is very busy today. God bless you on your way to healing!

Hi, I have been on the 3 big ones for mac since August of 2022. Last week I failed my second field eye test and my eye specialist took me immediately off ethambural. The next day I saw my infectious disease Dr and he concurred. I have heard that this is a rare side effect, but one you should be aware of it if you have eye problems. I haven't had the fatigue problem but do have the nausea and have to lay down for 20+ minutes when it is bad. Fortunately I am retired as I am 76 and don't have to deal with fitting work into my schedule anymore. It did take 3 years for them to diagnose me and a loss of 100 lbs. Once I found the right Dr's things got on track and last month I had my first negative cultures which is good since I have tested possitive for 4 different bacterias. I still have to take the meds for another year with NO positive cultures or I start all over!
Good luck and I am hoping you get good results.

Thank you for sharing about your eyes. I have procrastinated taking care of this, but I realize I must; thank you!

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