Has anyone had a problem with lack of appetite with bronchiectasis?

I was only diagnosed early May. At the time I was coughing constantly and suffering multiple infections, really sick for two-and-a-half months. I am just not interested in food when I'm sick like that. Coughing makes eating a drag. Sometimes eating would trigger a paroxysmal coughing fit, so I had reason to avoid food.

Since my diagnosis I started nebulizing hypertonic saline 2x a day, and doing nasal rinses once or twice daily. My infections went away, and I can once again eat without coughing. The less I cough, the more I can eat. Also I can exercise again (bicycling) which increases my appetite.

I am really grateful I feel okay again. Who would want to eat with so much coughing? Makes perfect sense to me people lose too much weight with this disease. I have no advice, I know I am lucky that nebbing saline works for me and as far as I know I don't have any more complicated bacterial infections that require antibiotics. Best wishes to you, I hope some health and appetite return soon.

I had lost around 5 or 6 kg just over a year ago and it really scared me when I realised that my weight loss was not in my control. However it coincided with a sputum sample positive for MAC and, while I was cleared of it within 6 months, I am sure the weight loss was associated with the MAC...one seems to lose their appetite with the infection. I have managed to keep most of my weight loss which I am happy with, but am pleased I am no longer losing without any control.
I have heard of people using high density foods such as peanut butter to try to sustain weight.

Yes I lost 5 lbs after coming up positive for MAC. Once I started antibiotics I gained it back (+ a couple more 😕). Some people also have weight loss if the antibiotics cause gi upset. A good probiotic can help.

I have had two MAC infections over the course of the last 13 years. Each time, I lost a considerable amount of weight and was not able to regain the full amount. I started that journey at about 134 lbs and lost 14 lbs. After 8 years I was back to 128. After the second infection in 2020, I went down to 114. I fought my way back to the 119-120 range but cannot seem to move above that. I'm 5'6" , so I feel like I am too thin. I try to eat healthy and snack whenever I feel the slightest bit hungry. I know MAC and bronchiectasis is different for everyone, but I think weight loss is just part of the package for many of us. My latest strategy has been to make a quart of ice cream once a week to share with my husband. Not exactly health food, but delicious and lots of fun!

I too am struggling and the problem seems to be total lack of appetite. I’ve even resorted to edibles which hasn’t worked either. My family is worried and NJH says to gain 10 lbs- not easy!
I’m 5’3” and weight 95.

Thanks for sharing your experience. I was just diagnosed with MAC and the chest ct showed Bronchiectasis. I went from 152 to 135 and find my appetite much less. I had been told to not eat four hours before bedtime (acid reflux guess before the MAC diagnosis) and know that “fasting” made me lose weight too. I’d like to have an appetite back and no nausea from the three meds three times a week for a year. It is helpful to read everyone’s experiences and see that all our bodies are so different we have to figure it out for ourselves. So thank you for sharing…

I am 5 ft 6 in and 112. There is a higher incidence of this disease in women with low BMI. This does not make sense to me. How can there possibly be a cause-and-effect relationship going on? I have bronch and so-far-untreated mycobacterium abscessus and notice my appetite fluctuates frequently,

I lost 6-8 # , I gained them back , I was on the big 3 for 10 months, sputum came back negative in May this year , appetite still not good, I continue to supplement with Premier Protein drinks and take Tums at bedtime, just finished Augmentin for my BE flare up. Coughing has slowed down, we just hope for the best , praying for all of us.

Thank you for your feedback! Do you experience any intestional discomfort after drinking the Premier Protein drinks? I've tried every kind but still end of stopping because of the intestional problem.

Boy, I agree! I'm also 5'3" and 97 lbs. I can't afford to lose any more weight!