Weight loss

Weight loss can be an indication of infection during the initial disease along with side effects from taking the medication due to nausea and diarrhea. Can you share a little more about where you are in the process? Have you been diagnosed, are you treating an infection, other co-occurring issues? This is somewhat common which other people have experienced. A dietitian can be helpful as well beyond adding in protein shakes and higher calorie foods. One recent poster suggested eating a bowl of ice cream before bed when taking meds which my sweet tooth appreciated!

@rmoore901
Yes, I have been diagnosed with bronchiectasis. I do not have any infection currently and haven't for 6 months. I am on Brinsupri for 6 months (with little noted improvement in my symptoms of BE) The other issues include 2 surgeries for a torn quad tendon and a shoulder replacement (which meant no gym workouts for 5 months) I was in very good physical shape before the surgeries but have lost a great deal of muscle mass which I know is responsible for a lot of the weight loss. I am back to the gym now and trying to build back some of that muscle loss. I am eating well and even eating that bowl of ice cream most nights. But barely holding on to my weight. ( I was 220, and now 190.) Thanks for your response. Incidentally, all of my labs came back normal)

I would like to hear some discussion on this subject.
I went from 220 to 100.
A lot of muscle wasting.
I was so weak and out of breathe. Couldn't even walk a block
Now I'm 120-121.
Probably thanks to protein drinks.
I've been to pulmonary rehab.
I'm wondering can we build muscle after all this wasting.
Just day to day activities wear me out. I think of it as my NEAT exercise.
Anything extra is exhausting.

Yep my story also dropped 70lbs suddenly after after the antibiotics wreaked havoc on me . I was fine till treatment started.
Left me with some kind of gut damage started with foaming urine ( no protein or infection) then oily floating stool like some kind of fat malabsorption.
It’s all muscle that’s gone like my body is using it for fuel
Currently down to 90lbs. I was given high does clofazimine which is known for this plus all the other gut/ nerve toxic poison antibiotics they subjected me to for no good reason

I have a very substantial weight loss. My normal weight in the past was 110-112 lbs. I now weigh 76 lbs. I was diagnosed with MAC back in 2022. I have taking antibiotics for several years for which I have had debilitating side effects (stomach discomfort and diarrhea after eating, weakness, vision and hearing loss). I tested negative for MAC over a year ago and am hoping to stop treatment after my next CT scan which I will be having soon. I have been under the care of a pulmonary physician, an infectious disease physician, and a gastro physician for many years. The gasto physician diagnosed me with EPI (exocrine pancreatic insufficiency) which could be related to my weight loss.

I have lost 30 pounds since my diagnosis of BE three years ago and MAC within the last 9 months. Mostly muscle mass. I am 5'7" I went from 160 to 130 (sometimes lower) I started working with a personal trainer and a nutritionist and am slowing regaining lost muscle. I am even starting to see that my arms are beginning to have a bit more definition these days. I take the big three as well as Arikayce, Clofazimine every day and use a Smartvest twice a day. The struggle is real... actually it sucks. Unfortunately this is my reality. Somedays I feel like I can barely move. That being said. I am not ready to give up. I belong to a couple of support groups I find them EXTREMELY helpful!

Yes, these groups really are helpful and often encouraging, not always good news but at least we know we are not "imagining" many of our symptoms. Thanks for responding and I wish you well.

@mamiebarker I am no expert but I am a retired RN and I would be happy to be 5' 7" and weigh 130 pounds. I learned a normal weight for a 5 foot woman is 100 pounds and for every added inch of height, five pounds should be added.
In August 2022, my asymptomatic M. simiae( 2012-2022) decided to transition to M.abscessus. I went from 138 pounds to 124 lbs. I am 5'9". I was a happy size 6. I now where a size 4 and have tried to gain weight. It is impossible. I am on linezolid(600mg), clofazamine(100mg) and Arikayce. I use my Afflovest. I try to walk at least 3500 steps a day and lift light weights. I found keeping hydrated (Body Armour and G2) in addition to water helps with my energy level. I am a 77 year old bean pole, but I am alive and happy despite the BE and M.abscessus.

Adding to the above informative comments....my pulmonary says unexplained weight loss is a reason to have a repeat CT scan. Your tendon issues may well explain your weight loss, however.

Prayers for all. Difficult journey! I lost about 20 lbs (120 to 100). I was caring for my husband (Alzheimer's) and got very run down causing my asymptomatic MAC to get very bad. It was eating a hole in my right lung and ended up having most of that l lung removed at Christmas time. Ugh. A rough journey. Still recovering from that. That breathing tube will wreak havoc! I recently started taking creatine. Very safe... good for cognitive and muscle repair. I immediately started putting weight on. You need to drink a lot water with it. You can take it on an empty stomach in the morning or anytime you wish ...just be consistent when you take it. It does help put weight on.
Also I was on Nuzyra and Clofazimine almost a year among other things I did on my own. My last sputum test cultured no MAC. See my pulmonary in a week...I think she'll want to bronch me to look around and take more samples for culture. Not coughing even when I do my treatments barely coughing. We'll see!