(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Thanks Heather @heathert for planning to stick by us. You've meant a lot to us too -- hugs!

@ginak thanks very much for the info about Behavioral Cough Suppression Therapy (BCST) training. This cough is really, really frustrating sometimes. (Sometimes I have coughed so hard I have to wear an incontinence pad in case I wet myself -- that's never ever happened to me before! It's very undignified, laugh)

Has anyone had Clofazimine before? What was it like?
My pulmonologist / thoracic specialist has taken me off Rifampin because it was interacting too much with all my heart, thyroid and cholesterol drugs. It's being replaced by Clofazimine, which I have to start tomorrow night, with the Azithromycin and Ethambutol.

Hi Anniepie!! I went to physical therapy to help my coughing and incontinence but when it came down to it I was just coughing so much and so hard all the time (I use to go through a Big box of Kleenex) in a day for the last year until I started therapy in August —5 antibiotics—3 oral and 2 IV’s for 2 months. I wore a # 6 Always—-bladder discreet pad —-I now just continue with a much lighter pad because I don’t want an accident and I believe that coughing is a good thing to get that stuff out of your lungs. Good luck—to all of my sweet confidantes —thanks for sharing❤️—I HATE coughing🥵🥵🥵 Judy

I have been on Clofazamine for about a month and a half now and I have not had any problems with it —I live in Florida so I have a tan so if it’s coloring my skin I don’t know I haven’t had any kind of reactions with it at all.☺️🤞🤞🤞🤞🤞 I always take it with food like it says.

So sorry that it might be Arikayce. I'm doing fairly well on it 3x a week with lots if bad shortness of breath for a couple of hours afterwards. Best of all, no pseudomonas or Klebsiella in the October sample. I hope you can use it and it works for you.

@anniepie Our constant coughing is certainly very annoying to us and to others. If I cannot stop coughing at bedtime or during a catscan procedure. I use sore throat spray to numb the sensation in my throat temporarily. Our coughs are certainly a good thing as they clear our lungs. I also have bladder leaks too and have to tell the lab people I need to take my sputum cup to the bathroom to which they inform me they don't need a urine sample. I have to laugh when I tell them they will get a urine sample on the chair if i cannot take it into the bathroom and sit on the toilet while I try to forcefully cough to get anything out. More times than not I take my cup home because I cannot get any sputum out.
I went straight from period pads to bladder leak pads and early menapause. I have no shame in saying that. I did try natural remedies and many pessarys. I take hormone replacement and that was the only thing that helped with my menopause symptoms.
I also wear a mask every time I leave my home and to take my dog out it helps keep the cold air or the pollen or other irritations out of my lungs . And I glove up to go to the store, doctor's appointments, Pharmacy and friends and families homes. I am mostly a home body now with my Huntington's Disease symptoms preventing me from driving. Most of the time I have disability resources for getting me to my doctors appointments. I got dizzy and had unexplained fevers so my pulmonary doctor admitted me for observation and IV Antibiotics and breathing treatments for 6 days. Afterwards I reciveved home care for two months. I was afraid of getting dizzy while driving. I haven't had a dizzy spell since April. I am dependent on a walker now because of my Huntington's unsteady gait... I am unashamed to wearing a bladder leak product and you should be too. As much as we cough its a necessity. Happy Halloween everyone!!!

One of the major reasons I like implementing twice daily airway clearance protocols (I use 3% hypertonic saline via nebulizer) is that I get my coughing episodes over with in two “sittings”! The rest of my day and night are virtually coughless!

Rits. When you say 3 times a week...do you mean every other day or 3 days on and 4 days off. Just curious... nurse and pharmacy told me I needed to take it every day. It is hard to fit it into my schedule with getting ready for work and all. I appreciate you feedback. Candy

Thankfully, I don’t have very bad coughing unless it’s allergy season, (May and September for me), with awful post nasal drip. Then, infrequently, I cough so bad it makes me gag! I started wearing bladder leakage pads also 2 years ago for a couple of months. But, then found out it wasn’t my bladder after all. At my yearly GYN appointment when I told my Dr about it, he didn’t think it was urine so he did a biopsy and surprise, I had endometrial cancer. Thank God it was very early stage! I had surgery and radiation and am now 2 years cancer free. AND I no longer wear a bladder pad. So I guess my cough and throat clearing isn’t that bad after all, but, it’s still annoying sometimes. I’m happy, and sad, there are others that understand this crazy journey. 🙏🏻 for all.