I started Ethambutol , Rifampin and azithromycin in early August. I felt nauseated and lost 9 pounds the first 3 weeks ,up my Mayo doc encouraged me to try to stick it out as usually the side effects subside.

I now feel much better, not as great an appetite as I had before the meds, but I eat healthy and a side benefit is my weight is now where I like it to be. Not a great way to do it, but I'm not that hungry, so with exercise and healthy food I maintain and work at it to keep my weight up.

The drugs appear to be working slowly, my cavity is stable in diameter and thinner in cavity thickness. So this small downward change is positive. We take the good news we can get!

Still a bit tired, but part of that might be being 70. Back to work part time at the homeless shelter. Life is ok on the big 3! Not perfect, but ok. 🙂

Hi, I was diagnosed with MAC, COPD and Sarcoidosis six months ago - have been on Clarithromycin 500mg, Ethambutol and Rifadin now for almost 5 months. Insomnia is a problem, no appetite but otherwise okay. Very slight improvement on my last CT Chest Scan - continuing for the moment, although Spec. is talking about Steroids which I am not happy about. Good luck. Jo

Hello Jo, if you were replying to Renee .. thank you SO much for jumping in and adding in your experience to help her on her journey!

If you are new:
Welcome! Glad you found our Forum! I would encourage you to read the pages of the past posts to find out some pretty good tips on how others have handled various side effects of our disease .. knowledge is power .. I think it really helps on this journey of ours!

I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now "stable". As I have posted I really don't know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn't really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use ONE TwinLab Magnesium 400mg tab plus half an over the counter Unisom Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can't say they would for you .. but do be aware they will result in looser stools!

The steroids .. my guess .. it is not for the MAC .. I have not heard anyone speaking of it being prescribed for our disease. The only time I took steroids was when I had terrible pneumonia in 2003 .. as a result I ended up with GERDS. Have NO idea if steroids had anything to do with it .. BUT you might discuss steroids potentially causing GERDS with your doctor. Because ALSO MAC and GERDS are commonly seen together. Also you might try googling steroids to see how best to cope with the side effects etc. That is what I always do .. BUT don't get freaked out .. you NEVER get all the problems they talk about! Be sensible and just do your "due diligence" about seeking knowledge.

In terms of appetite .. try for 5 small meals per day .. or get some Ensure if nothing else .. you MUST get nutrition into your body! Remember .. you are given but one body in this lifetime .. you must take care of that body .. so IT can take care of you!

This is a tough time for you .. be kind to yourself. Figure out what "fills your cup". What gives you serenity. Then seek that out for yourself .. because you CANNOT "pour from an empty cup" .. you cannot give to anyone else or yourself if you are trying to operate on empty. Just know there is a rainbow at the end of the end of this tunnel .. you WILL get through this .. you WILL come out at the end! I have been off antibiotics and "stable" since May 2014. You WILL get through this .. IF you take good care of yourself .. exercise .. eat well .. be kind to yourself .. and seek serenity. Jo, keep coming back to our Forum .. you will find really kind helpful people here! Sending you a Big Hug! Katherine

Be sure to have your hearing checked as azithromycin cause hearing loss for me and I had to go off the drug.

Colleen, I spoke to someone at the Mayo Clinic yesterday and told them this support system is incredible. Thank you.

Thank you, Jane. I appreciate your telling them. We're pretty proud of the support and information exchange that happens on Connect. The collective knowledge is amazing. I also appreciate the respect and compassion that is found throughout the community.

@flib, That is good know, thank you for posting.

Terri, I am hoping to hear from my pulmonary doctor today as I need to know more about what he is thinking might be some good steps forward with my care. This site is so informative. Many thanks.

@macjane, please keep us posted.

My pulmonary doctor suddenly will not see me for six weeks. Very discouraging.