Weight Loss

Posted by lorrie48 @lorrie48, Jan 24, 2025

I have gone from 117 lbs to 108 lbs. since I was first diagnosed with Bronchiectasis and MAC a year ago. I've been taking the Big 3 for seven months. Early on, I had loss of appetite but not now. In fact, I eat well. I was just wondering if weight loss with MAC and bronchiectasis is a thing and what would cause it.

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Profile picture for scoop @scoop

In my case with bronchiectasis only, over time I have lost some weight. Not enough weight to cause concern from my PCP. My clothes fit better and I am happy about that. Nonetheless, if/when I get an exacerbation it's easy to drop weight (and muscle). Making sure I eat enough (including lean protein) is a daily essential for me. Plus, watching GERD triggers. I'm currently experimenting with the Acid Watcher Diet for GERD/reflux. In summary, it's eating alkaline rather than acidic foods, plus a 1lb of veggies and 1/2 lb of fruits per day. Very healthy but I need to make sure I get enough calories.

Michele McDonald (sp)?) of NJH presented on weight loss with bronchiectasis and MAC. It was truly informative. It's on this site somewhere. She encouraged caloric density (nut butters, nuts, etc). She also mentioned a drug regimen, which has been quite successful for managing weight loss. I believe it's a low dose anti depressive along with an ADHD medication. The anti depressive works to increase appetite and the ADHD drug keeps one moving and active.

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@scoop was the antidepressant mirtazapine?(remeron)

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Profile picture for coffcoff @coffcoff

I don't think weight loss is a thing with bronchiectasis but it definitely is with MAC. I went from 135 to 113 over the course of about 3 years, not thinking too much about it because I was happy to be losing weight and my PCP wasn't concerned. That is, until I lost the last 5 pounds in the course of a week! That woke my PCP right up! He ordered a chest Xray (which he should've done years previously after my frequent complaints of coughing). The Xray showed bronchiectasis, which then led to a CT which showed possible NTM. Long story short, it took me over 2 years to regain most of the weight. I'm now at 128 and happy about that but it took a lot of work. At first I had no appetite at all and had to force myself to eat. At the same time I was taking meds for the MAC. I knew the MAC was gone when I started putting on weight and my hair started growing again.

Keep eating healthy food and lots of protein, even if you don't feel like it. The weight will come back, I promise.

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@coffcoff
Thank you for those encouraging words! I have had rapid weight loss as well. I am trying my best to eat lots of protein and go into this MAC treatment plan as strong as I can. I have just begun the meds.

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I went from 135 lbs to 112 currently. Was on the big 3 for Mac for 16 months and ate well. I was Mac free in April this year but now being treated with pseudomonas with tobramcyn on a 3 month nubilizer and weight is so far steady.

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The weight loss is annoying. I was already slim and have lost a lot of weight. It is difficult to put it back on. My BMI is in the lower range so not good. I am still working and get exhausted. It is a common symptom of NTM and bronchiectasis mine all started when I was on the big 3 - nobody prepares you.

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Profile picture for clk1958 @clk1958

I went from 135 lbs to 112 currently. Was on the big 3 for Mac for 16 months and ate well. I was Mac free in April this year but now being treated with pseudomonas with tobramcyn on a 3 month nubilizer and weight is so far steady.

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@clk1958 @namd My weight and weight loss was very similar to yours (clk1958) when finally diagnosed. I struggled to put weight on but for me the highest protein/calorie Ensure did it. I hated all the added sugars but was desperate to put weight on. I am still on the meds but fortunately regained my appetite so I dropped the Ensure and my weight has held at 126.

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I have been struggling with my weight too. I weighed 110 pounds two years ago but now I am down to 98 pounds. My BMI has dropped to 18.2. The Bronchiectasis, MAC and Pseudomonas seems to deplete my ability to keep weight on. I do eat healthy and supplement with protein powder. I am able to exercise daily and still maintain a fairly good energy level. Will try to do some weights to gain more muscle mass and maybe that will help!

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Interesting about Ensure I could not tolerate the sweetness and despite sipping it slowly it upset my stomach. I add protein powder to my smoothies in the hope that my weight increases. So many people want to lose weight and we cannot put it on! Happy eating

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Profile picture for ja24 - Jeannie @ja24

I have been struggling with my weight too. I weighed 110 pounds two years ago but now I am down to 98 pounds. My BMI has dropped to 18.2. The Bronchiectasis, MAC and Pseudomonas seems to deplete my ability to keep weight on. I do eat healthy and supplement with protein powder. I am able to exercise daily and still maintain a fairly good energy level. Will try to do some weights to gain more muscle mass and maybe that will help!

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@ja24 My understanding is that 18.2 is an O.K. BMI. What have you been told?
My BMI is 17.6 and I am working on, trying to get it up. Hard to put the weight on with eating healthy. I do notice that what also raises the number on the scale is....lots of water. Stands to reason.
When i had been down ten pounds from where I am now, I was at nearly 90lbs and I am now at 101.77, I was so light that I was constantly tripping over myself as if I was about to fall. That ended with just that small gain in weight.
Barbara

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Profile picture for namd @namd

Interesting about Ensure I could not tolerate the sweetness and despite sipping it slowly it upset my stomach. I add protein powder to my smoothies in the hope that my weight increases. So many people want to lose weight and we cannot put it on! Happy eating

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@namd I couldn't handle the weird ingredients, emulsifiers and preservatives. It gave me a ton more mucus.

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