MAC Big Three Side Effects

I don't think she meant that there wouldn't be side effects to anyone else. She said that she didn't have any side effects but everyone's different. And that's extremely true because we all tolerate things on different levels. I'm only on azithromycin and ethambutol, both for about a month, and I haven't had side effects as of yet either. I am grateful for that but I know that some people have horrible side effects. And your doctor should have told you about the side effects, especially the vision side effects in the hearing side effects. Many times doctors nowadays think that we're all looking the stuff up ourselves and reading the pamphlets attached when we pick up our prescriptions. Unfortunately a lot of people don't read those things or look up their prescriptions to see what the side effects are.🙄
Angela

I have been on all three meds for over two years. When I told my optamologist that I had been told one could affect my eye sight he knew which one. I see him next week but I notice a hearing loss more than a vision problem. It appears that due to MAC being rare many pulmonologists have never treated someone with it so aren’t familiar with many side effects. I don’t feel up for a debate into what anyone else thinks. I have lost 28 lbs (125 down to 94.6 today) and the doctor I was referred over to told me today I am going to die if I don’t stop losing weight. He didn’t agree that the dizziness is related to MAC even though everything I read online about each med said ‘severe’ dizziness was a side effect.

That's great you have no side effects. Maybe it is the different antibiotics. I don't think they would be for me as I am allergic to penicillin. I am hoping since my last cultures were negative, the ones I just did will be also. Good luck to you.

Thank you and good luck to you also!

I am starting this treatment today . Any information you all can give me on what to expect will be appreciated. Thanks

I was only sharing what I found but in no way was I even suggesting that everyone will experience the same side effects. We are all different. I never even thought of the dizziness being related to the three meds I am taking for MAC. I asked my new pulmonologist yesterday (the guru for MAC) and he denied they are related. The more I thought about it after leaving his office the more I believe they are related. Possibly many are like me - they don’t connect it to meds they are taking so don’t mention it to their pulmonologist. If you are taking the 3 meds and aren’t experiencing dizziness - wonderful! However, if anyone does, know you are not alone. We ALL know that not everyone will experience side effect or the same ones. It is information intended for those that do rather than those who don’t.

Weight loss is indeed a nasty side effect - mine was exactly like yours.
A few years ago there was a lengthy discussion about many strategies for packing on healthy calories. It began (more or less) here:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=678#comment-65100
Maybe some of the suggestions will help you.
Sue

I am 5’5” and always weighed around 125 lbs until last Fall when I started losing weight. I now weigh 94.6 lbs - I just have no desire to eat. I’ll look at all the suggestions and hope the new med, cyproheptadine, will give me a desire to eat something. Thank you for the link - I’m ready to try anything. Next combatting the dizziness.

I too had NO appetite nor any desire to eat. Mine was a forced regimen, 100-200 calories of nutrient dense food every 1 - 1.5 hours. A bit of full-fat Greek yogurt with fruit, 4 oz fruit veg protein smoothie, 1 oz cheese 1/4 cup cashews. This allowed me to stop losing weight. After I quit antibiotics the regimen continued for 18 months until I gained back the lost weight, which has been pretty stable for the past year.

Sue.

I've been losing weight even before o started the treatment yesterday. I'll list the 3 meds they have me on shortly. Thank you all for the help.