Connect
MAC Treatment: When will I see side effects?
Started a little over a week ago with the "big three" for my mac lung. So far no side effects at all except the orange urine after rifampin dose. Appetite is great with no changes, no fatigue which I have never had even before started taking.
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
@windwalker Hi Terri - I use my Aerobika while nebbing saline. I like it a lot better than my Acapela, and being able to do both at once cuts the time needed for treatment. I don't even need all the saline in the neb cup to get up whatever is in my lungs - the combination really gets me coughing quickly.
Sue
-
Like -
Helpful -
Hug
1 ReactionI wrote that question in 2019. I stopped taking the meds a few months after starting when I went to Mayo. My Dr told me at Mayo that the antibiotics big 3 should never be subscribed unless you are really bad whuch I was not. He put me on neb treatment. I just went back yesterday and my lungs were almost clear and no sign of Mac. All tests came back negative. I have worked through covid, no longer wear a mask and love yard work and never wear a mask. The key is keeping the lungs clean.
Can anyone tell me how long it takes to get hit with side effects from MAC antibiotics?
Thanks.
@kmescherich, welcome. @wal6578 asked this very question and received numerous helpful tips from fellow MAC members about the onset of side effects from MAC antibiotics. For this reason, I moved your post to this existing discussion.
- MAC Treatment: When will I see side effects? https://connect.mayoclinic.org/discussion/when-will-i-see-side-effects/
Click the link to read comments from the beginning from @tinaesims @kathyhg @derbeltal @sounder27 @rmason @tamarrillo2 @windwalker @toni1132 @irene5 @margiebanks @flib @heathert
Your question is a good one and a question many have when starting new treatment. It's important to keep in mind that everyone is different and not everyone experiences side effects or the the same effects. Was it suggested to you to have your eyes checked before starting treatment? When will you start?
-
Like -
Helpful -
Hug
2 ReactionsColleen I am not sure I am answering this in the correct format, but everyone on the Big 3 has to have their eyes checked by an ophthalmologist not an optometrist for a baseline. Ethambutol ( I think) is the culprit for causing color blindness. Every time I go to UMASS I am checked and have the color blindness app on my phone. I was not allowed to drive in Tennessee, but here in Connecticut it is ok. Go figure. Being proactive with the meds is always a good thing. As for side effects everyone is different . I experienced side effects within the first 24 hours and some doses and med types were changed. And now I’ve been on Arikayce for forever. I hope within the next few months to be able to go off of everything. Irene
-
Like -
Helpful -
Hug
1 ReactionI had to have my eyes checked at the beginning and every two months while on Ethambutol. I started having side effects in about three months. Stomach was the biggest problem. I lost 30 pounds. I am back up to 115. Need to be at 130. I have been off the meds for two years. I do have side effects but am able to deal with the side effects.
Good luck but let your Dr. know. I did not because I was told I could quit in one year if I stayed the course. I probably should have changed my meds but did not tell Dr. so now I am living with side effects. Still have MAC but it is stable.
Prayers are with you.
Derbeltal