MAC Big Three Side Effects

I was fine with the big 3, even at 40 months. It's the Amikacin IV that caused such bad dizziness I wound up in the ER

I’m not using an Amikacin IV - only a Philips Innospire Essence with 7% Saline. I passed out once as I got out of bed coming to when my face hit the decorative metal bed frame of my bed. I’ve learned to either sit down or if not possible to bend over until the dizziness subsides.

I am on the big 3 - Azithromycin, Rifampin, and Ethambutol.

I hope for your sake that they take you off those antibiotics and find something else to treat you with. I have read some people refuse to take the antibiotics and go on Cipro and another drug I can't remember. I really hope that you can gain some weight back!!
So sorry you have to go through all this, and I wonder if you're having the side effects because of how long you've been on the drugs. I think that can have something to do with it. I'm new to taking them and that's not saying that in 8 months that I'm not going to have side effects to some degree, and I hope I don't but it could happen. I like reading comments because I want to be aware of what to look out for!
I'm really hoping that they figure out something different for you because if you go out to meds you'll probably gain some weight back and having some weight on your bones with Mac it's really important!!! Thanks for your post and I wish you all the best luck!
Angela

Hi, I have been on the big 3 for 8 months also. I was taken off ethambutol 3 weeks ago as I failed my second eye field test and my eye specialist took me off it immediately. I had an appointment with my infectious disease dr the next day and he concurred. He said the ethambutol was used to prevent the mac from going after the primary arithromycin. Maybe the rifampin in your case is the same. I was lucky I haven't had rge fatigue but did have the diarrhea and nausea but found if the nausea was bad and I layer down for 20+ minutes it helped. However I am 76 and retired so don't have to fit work into my schedule anymore. It did take them 3 years and a loss of 100 pounds for them to diagnose me. Good luck, the side effects are different for everyone and the eye problem I have is not that common.

I also have been taking the big 3 for over a year. I hope when August rolls around, the Doctor will take me off them. At least that is our goal right now. It was very rough on the digestive to start. I started using pro-biotics. They really help. I sip lemon-ginger tea with a pro biotic along with ginger cookies. Anything ginger will calm the stomach.

I also have been very fortunate in terms of side effects. Apart from some nausea and diarrhoea in the first few weeks I have had no problems. I take the three medications first thing in the morning an hour before breakfast. I am 67 years old.

When I googled side effects for all three meds one listed on all three was severe dizziness. The new lung specialist I was referred to denied it. My sight and hearing are both being affected so my concern over being on all three for almost 3 years has grown. I decided to try stopping them for two weeks and see if the dizziness disappears. It didn’t completely disappear but it has greatly improved. This same specialist was tremendous and offered hope during my first appointment; however, he was like a different person during my second. He was angry that I had lost another 1 1/2 lbs - as it appeared to be a loss for him. He wasn’t compassionate or comforting as he angrily told me I was going to die if I continued to lose weight. He has now doubled my Rifampin to two a day. My feeling at this point is when a doctor refuses to hear what you are saying about effects you, the patient, is experiencing it may be time to look for another doctor.

Thank you for your kind reply. I’m at a point of losing hope three years later after the latest CT results show the bacteria in my lungs is twice as bad as one year ago. Then the Guru for MAC got angry with me because I lost another 1 1/2 lb telling me YOU ARE GOING TO DIE if you continue to lose weight. That gives me something to look forward to. I am trying to gain. At least I haven’t lost any more weight - holding at 94.6 lb down from 125 last Fall. I stayed right at 125 lbs which I have pretty much weighed my entire life until two years after being diagnosed with MAC. Even my diagnosis was slow coming as I have only been experiencing severe fatigue. My primary care doctor ordered the sputum test which is actually what provided my diagnosis.

Hmm, it might be time for a new doc, maybe at Mayo, NJH or another NTM and MAC center of excellence?
It's awful when a doctor speaks to a patient like that, and certainly doesn't contribute to healing.
Sue