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Can anyone explain to me why many of the prescriptions, such as inhalers list as a side effect “upper respiratory infections” or “pneumonia”. Isn’t the reason we are taking these medications to avoid such conditions? Also can anyone tell me what inhalers really works well for them? Insurance doesn’t cover many of them.
⌨️ Happy Typewriter Day, Bronch and NTM 360social!
Long before smartphones, tablets, and laptops, people shared their stories one keystroke at a time on a typewriter.
Every letter mattered.
Every word mattered.
And every page told a story.
Living with bronchiectasis or NTM can sometimes feel a bit like that.
Our journeys aren't written in a single chapter. They're built over time—through appointments, treatments, airway clearance sessions, good days, difficult days, and the countless moments in between. Along the way, we learn, adapt, persevere, and often discover strengths we never knew we had.
One of the most powerful things about this community is that no one has to write their story alone. Every experience shared, every question asked, and every word of encouragement helps someone else turn the page and keep moving forward.
📝 So on this Typewriter Day, we'd love to hear from you:
If you could type one sentence for someone living with bronchiectasis or NTM to read today, what would it say?
Maybe it's something you've learned.
Maybe it's encouragement you wish you'd heard earlier.
Maybe it's a reminder that helps you through challenging days.
We'll start:
"Progress isn't always measured in giant leaps—sometimes it's simply showing up and continuing to write your story."
Now it's your turn. Share your sentence in the comments and let's create a page filled with wisdom, hope, understanding, and encouragement for one another. 💙
⌨️ And just for fun: Did you ever use a typewriter? We'd love to hear your stories—or see a photo if you still have one tucked away somewhere!
Thank you!
I'd vote fries too, but do enjoy a nice crispy onion ring every once in a while.
Thank you for your thorough reply, Katie. I had never heard of this either, but it does make sense. It reminds me of farmer’s lung.
Farmer’s lung is a lung problem caused by breathing in mold from things like hay, straw, or grain. This often happens when working in barns or around dusty, moldy farm materials. Over time, the mold can irritate the lungs and cause symptoms like cough and shortness of breath.
Both caused by repeated inhalation of mold spores that cause irritation and lung infections.
I'm sorry that happened to you! Did the rash go away once you stopped the medication?
I've been trying to add more high-protein, easy dinners to my rotation, and I made Mississippi Pot Roast over the weekend. It was AMAZING! It’s simple to prepare, packed with protein from the chuck roast, and makes great leftovers for meal prep.
I thought I would share it in case you're looking for another easy recipe. Here’s the recipe I used:
High-Protein Mississippi Pot Roast
Ingredients
- 3–4 lb beef chuck roast (trim excess fat if desired)
- 1 packet ranch seasoning mix (about 1 oz)
- 1 packet au jus gravy mix (about 1 oz)
- 6–8 pepperoncini peppers
- 1/4 cup juice from the pepperoncini jar
- 4 tbsp (1/2 stick) butter (can reduce slightly to lighten it up)
- Optional: sliced onions or carrots for extra veggies
Directions
- Place the chuck roast in the bottom of a slow cooker.
- Sprinkle the ranch seasoning and au jus gravy mix evenly over the top.
- Add the pepperoncini peppers and pour in the pepperoncini juice.
- Place the butter on top of the roast (and any optional veggies around it).
- Cook on Low for 8 hours or High for 4–5 hours, until the meat is very tender and shreds easily.
- Shred the roast with two forks, mix it with the juices in the slow cooker, and serve.
I served it over roasted broccoli and cauliflower and a side of cottage cheese.
What a great analogy! I also prefer fries!
Interesting! I have never heard of this. Following to see if any musicians chime in on this thread. Thanks!
Team French Fries! 🍟
Brandon,
Happy National Onion Day! I love the analogy of onions rings to our daily treatment regime. I prefer French fries over onions. Not to be a negative Nelly, but onions can be an GI/GU irritant for some individuals.
I am working on Vitamin J today- things that bring me Joy. I hope that you and the members of this community have a superb day!
French Fries! Love 'em!
🧅 Happy Onion Ring Day, Bronch and NTM 360social!
It's Monday, and apparently it's National Onion Ring Day — which got me thinking...
Much like an onion ring, life with bronchiectasis or NTM can come with a few layers:
🧅 Airway clearance treatments
🧅 Medications and nebulizers
🧅 Sputum cultures and appointments
🧅 Pulmonary rehab or staying active
🧅 Managing fatigue and symptoms
🧅 Family, friends, and caregivers
🧅 Finding time to enjoy the things that make you smile
Some days those layers can feel overwhelming.
But just like a basket of onion rings, you don't have to tackle everything at once. Sometimes the best thing we can do is focus on one layer, one task, one step at a time.
As we start a new week, what's one thing you're focusing on this week?
💙 Staying consistent with treatments?
💙 Getting outside for a little fresh air?
💙 Making time for rest and recovery?
💙 Checking in with a friend?
💙 Celebrating a small win?
Share below and let's encourage one another. Sometimes the smallest victories are the ones worth celebrating most.
And while we're at it...
🍽️ Monday Poll:
🧅 Onion Rings
🍟 French Fries
🤔 Depends on the day
Which team are you on?
Here's to a week filled with support, encouragement, and a community that understands all the layers that come with this journey! 💙
😀
Vinny,
Enjoy your special day with your family!!! :)))
Tim,
Thank you for sharing the "dad joke", lol. You are a great father!!! Enjoy your special day! :))))
Brandon,
You requested pictures. This is a treasured photo of my dad and me. I will always cherish the memories of his warm, fun-loving spirit, his kindness, and the strong values he instilled in me. Although he passed away far too young, the love, laughter, and lessons he gave me have stayed with me throughout my life. He taught me so much about kindness, integrity, and how to treat others. I feel grateful for the memories we shared and for the impact he had on my life. Enjoy this Father's Day to the max! :)))
Happy Father's Day.
Hi everyone! In honor of Father's Day, thought I'd share a Dad joke with you all for a laugh.
Q: Which days are the strongest?
A: Saturday and Sunday. The rest are weekdays! (Get it?! "Weak" Days?! That's funny stuff!)
Happy Father's Day to all of the fathers, stepfathers, grandfathers, and to everyone serving in a fatherly role!!
Eddie,
Hello! I am not a Saxaphone player but the link below is an article on a saxophonist who learned proper technique of cleaning his saxaphone so he could continue to play: https://www.livescience.com/41057-what-is-saxophone-lung-hypersensitivity-pneumonitis.html
Saxophone lung is a respiratory condition linked to playing wind instruments. It is primarily caused by exposure to mold and allergens that accumulate in the instrument, leading to hypersensitivity pneumonitis (HP).
Causes and Symptoms
• Mold Exposure: Mold can grow inside saxophones and other woodwind instruments, especially if they are not cleaned regularly.
• Respiratory Symptoms: Symptoms may include coughing, wheezing, shortness of breath, and fatigue.
Prevention
• Regular Cleaning: Musicians should maintain a strict cleaning routine to minimize mold buildup
• Awareness of Symptoms: Early recognition of respiratory issues is crucial for treatment. I hope that this information helps you and you can continue to play the saxophone 🎷.
.
I just read about something called "Saxophone Lung." As a saxophone player for 65 of my 76 years, I'm wondering if this is the cause of my problems. Are there any wind instrument players out there who have given up playing for fear of infection?
Happy Father's Day weekend to all those who celebrate this weekend as a father, grandfather, godfather, and for those who act in a "fatherly role". Many of us have lost our fathers, but we will never forget the values that they instilled in us. We appreciate anyone who acts in a "fatherly role" by lending us a listening ear on challenging days, a ride, or accompanying us to the doctor, reminding us of our resilience, and so much more. Have a great weekend! :))
Are you familiar with the drug Clofazimine? Clofazimine is used for the treatment of some strains of NTM infections. Common side effects include stomach upset in some individuals and gradual skin tanning. The skin discoloration will begin to fade once the medication is discontinued. A baseline EKG and periodic repeat testing should be done while on this medication. Clofazimine is not commercially available in the U.S. for NTM infections. Access is through Novartis‑sponsored expanded access programs or FDA‑authorized SPINDs, with strict eligibility, documentation, and manufacturer cooperation requirements. Your healthcare provider will get this approval process started for patients in need of this drug. Have you taken Clofazimine? If yes, do you want to share anything with the community about this drug?
💙 Happy Father's Day from Bronch and NTM 360social 💙
This weekend, we're celebrating all the fathers, grandfathers, stepfathers, uncles, mentors, caregivers, and friends who show up with kindness, patience, strength, and support.
Living with bronchiectasis or NTM can bring challenges that others may never see. A helping hand, a listening ear, a ride to an appointment, encouragement on a difficult day, or simply having someone beside you can make all the difference.
Father's Day is about more than a title. It's about the people who guide us, support us, and remind us that we don't have to face life's challenges alone.
Today, we'd love to celebrate those special people in our community.
💙 Who has been a source of strength, encouragement, or support in your life?
Share a memory, a story, or a photo below and help us recognize the people who have made a difference along the way.
Happy Father's Day to all who lead with compassion, understanding, and care.
Below is information on the different types of common rashes:.
- Macular rash
- Flat, discolored spots on the skin.
- Example: rash in measles.
- Papular rash
- Small, raised bumps.
- Example: eczema, some drug reactions.
- Maculopapular rash
- Combination of flat spots and raised bumps.
- Common in viral infections and medication reactions.
- Vesicular rash
- Small fluid-filled blisters.
- Example: Chickenpox, herpes infections.
- Bullous rash
- Large fluid-filled blisters.
- Example: autoimmune blistering diseases.
- Pustular rash
- Pus-filled lesions.
- Example: acne, bacterial skin infections.
- Urticarial rash (hives)
- Raised, itchy welts that come and go.
- Often caused by allergies.
- Petechial rash
- Tiny red or purple spots caused by bleeding under the skin.
- Does not blanch (turn white) when pressed.
- May indicate serious conditions and should be evaluated promptly.
- Purpuric rash
- Larger purple patches due to bleeding under the skin.
- Nodular rash
- Larger, deeper lumps beneath the skin.
Causes of Rashes
- Infections (viral, bacterial, fungal)
- Allergic reactions
- Medications
- Autoimmune diseases
- Heat
Peggy,
Hello! I have not yet heard of an all body rash from Brinsupri. Did your healthcare provider mention that he/ she has seen this type of rash before with Brinsupri? I am interested in finding out more about the type of rash - raised, bubble like, bright red, light red, Itchy? It would be great to share these details with the community in case anyone else develops a similar issue. Thank you!
I was takin Brinsupri for almost 2 months, but I had to stop because I developed a rash all over my body.
Brandon,
I agree that Juneteenth reminds us that progress is not only measured by how far we've come, but also by how we care for one another along the way. Having a supportive community enables us to keep marching forward, building resilience along the way. I hope that you enjoy this holiday weekend.
Today, we recognize Juneteenth—a day of reflection, remembrance, resilience, and freedom.
It also reminds us of something we see every day here on Bronch and NTM 360social: the power of community.
Many of us come from different backgrounds, different places, and different life experiences. Yet we gather here for a common reason—to support one another, learn from one another, and help make the journey a little easier for someone else.
Living with bronchiectasis, NTM lung disease, or caring for someone who does, can sometimes feel isolating. But every shared experience, every piece of encouragement, and every thoughtful response helps remind us that we are not alone.
Juneteenth reminds us that progress is not only measured by how far we've come, but also by how we care for one another along the way. By listening. By learning. By making space for every voice, every experience, and every story.
Thank you for being part of Bronch and NTM 360social and for helping create a community built on compassion, understanding, and hope. The support you offer one another each day makes a difference, often in ways you may never fully realize.
Wishing you a meaningful Juneteenth.
❤️
5644,
You are most welcome! Have a pleasant day.
Thank you 😊
This sounds fabulous!
Patricia,
Hello! Below are other tips to be mindful of when taking Azithromycin:
Take with or without food
Do not take with antacids
Side effects:
-GI upset
-rash
-changes in heart conduction. Monitor with an EKG if your health care provider feels it is medically necessary.
This one really made me smile! 😄
Yep, Duke's Mayo all the way around here. I think it's practically a requirement for living in the South. Like you both, I'm a big fan of chicken salad, and a good Chicken Caesar is one of my favorite easy picks when out.
This sounds absolutely delicious. I'm right there with you on the mayo-based dressings and salads. Now you've got me thinking about lunch!
You KNOW how much I LOVE chicken salad. Thanks for this! Will definitely start incorporating more Greek yogurt as a substitute for my Dukes! (Are there any community members here who are "Dukes mayo people"?) Growing up in Virginia, we like our mayo-based salads. However, knowing about and converting to a healthier option will not only help us to feel better, but when I have used Greek yogurt in the past, I could barely taste the difference! Also, the crunch of those pecans sounds awesome!
Hi @5564.
Thanks for sharing your thoughts with our community. I am sure you are not alone in feeling rushed at your appointment. This can be terribly frustrating when you have just had a hospital admission and are unsure of your health. I am not sure if you have been seen at one of the Care Center Network sites, but there are options in Florida (as you mentioned) and others throughout the U.S. as well. I hope (even in your provider's rush) that your follow-up care is good and that you get some of the answers you need. Sounds like the testing that is ordered is the right path, and I am grateful for that. Perhaps when you revisit your doctor, things will feel different in the office. Sending you lots of positive vibes as you continue to feel stronger after your pneumonia.
Yes, we certainly must be our own advocate or have someone to assist us. The PA and or RNP may have passed the message on to the doctor but….
Please review the relevant educational materials, podcasts and ask any questions that we may be able to assist you with . Knowledge is power, greater knowledge base, more equipped for the doctor’s limited time visit.
Thank you for your response. . I actually did send a message via the patient portal prior to this last appt. To request he take a little more time with me. Other than the allotted 15 minutes. To review the hospitals report from my recent stay for pneumonia. Because he did the same thing on a previous appt. I don’t think he checks his portal. Sometimes a nurse or PA will respond. But I will stay with him for now. We really do have to be our own advocates.
Kalli,
Thank you for reminding us of the Disaster Preparedness Plan- it is always best to be prepared, safe and not sorry for being unprepared. Having a disaster kit with necessary equipment, contact information, medications is of utmost importance.
Hi 5644,
I have had this happen to me, and I felt the same way. When you call to schedule your next appointment, I suggest asking the scheduler to make a note in your chart. Then briefly explain what happened during your previous appointment and how it made you feel. It may help to write a short summary beforehand so it's easier to communicate the key points and for the scheduler to document them accurately. Sometimes healthcare providers need a reminder of the distress and frustration patients can experience, especially in situations like yours.
5644,
Hello! I feel your frustrations. We are here to support you, to be a sounding board. I have been in your shoes. I assume that he did not hear you have difficulty breathing but he should have listened to your lungs with a stethoscope. We do have to make a decision on how we deal with our healthcare provider-some have brilliance, expertise with little bedside manner; others are charming but may lack the expertise needed. It can take months to schedule an appointment with a new pulmonologist in some areas. Hence, we decide how we will cope with the existing healthcare provider until we schedule an appointment with someone who will be better suited for our long term health needs. Good luck getting the tests done- let us know how your follow up appointment goes.
I have a pulmonologist who has a stellar reputation in my area, but bedside manner is much to be desired. I went to him recently after a two day hospital stay with pneumonia. In the “15”minutes he saw me. Standing as if hurry up. He had not looked at any of the results from the hospital. (Which I made sure were sent to him) he ducked out briefly to have a look. Didn’t have much to say. When I asked if the pneumonia was gone. He said “probably”. Without even checking my lungs. Ushered me out to the front desk to schedule a few procedures (lung function and xray.) I know people will suggest find another doctor. Well good luck with that. Impossible. In fairness I know these doctors are overwhelmed and it seems the shortage of doctors puts a heavy load on them. And I’m sure he’s a very qualified doctor. But everyone dealing with this needs to feel heard and relevant. Fortunately I have another pulmonologist in Florida. (Snow bird) who is the exact opposite. Takes time, reviews results That’s my rant!! Sorry ☹️
Are you taking Brinsupri? And do you feel it’s helping?
Dear Weezy, I too have been taking Brinsupri since the end of summer. I would be interested to know if you’ve felt any improvement? I don’t feel I have but Dr wants me to stay on a little longer.
Thank you for your message.
Make sure to register for the events, and you will receive an email notification once the webinar recording is posted to our YouTube page. https://www.youtube.com/@BronchandNTM
This sounds delicious, I'm going to have to give it a try. Thanks for sharing, Alyssa!
June is National Safety Month! One important way you can stay safe is by making sure you're prepared for an emergency. Disaster preparedness is extra important when you have a chronic lung condition. You may have to consider access to medications and other medical needs, as well as essentials such as food and water. Do you have a plan in place to stay safe and look after your lung health during a disaster?
Check out the Disaster Preparedness Plan booklet, which walks you through the process of planning for a natural disaster. It also includes handy resources including a page to organize emergency contact information, a list of questions to ask your doctor, and checklists for packing "go" and "stay" kits with everything you'll need in case of an emergency.
Hello! Are you currently taking Rifampin? Rifampin is an antibiotic used to treat NTM/MAC infections. Understanding the role of a drug, the dos and don'ts, and its side effects may make your drug therapy a little easier.
Individuals are advised to take it on an empty stomach
It is recommended to take this medication at bedtime with a saltine cracker and just a few sips of water.
Rifampin may interact with other medications (ex. thyroid medications, oral contraceptives). Please review all medications and supplements with your doctor and/or pharmacist.
Monitor Labs: Liver functions, white blood cell, and platelet counts. Your healthcare provider will order these tests regularly while you are on this drug.
Avoid alcohol- I realize that most printouts from the pharmacy advise you not to drink while on antibiotics, but I would really take this warning very seriously. I had half a glass of wine on my birthday when I first started taking Rifampin years ago, and I felt really wobbly, off-balanced afterwards.
Potential Side Effects: I am not listing the side effects below to frighten you but to educate you on what may be normal and what may be a reason to seek medical care. Please report any adverse effects to your healthcare provider and do not wait until your next appointment. You may have to get labs done and discontinue the drug.
Orange/red urine/ saliva and tear secretions- this is normal, and it will disappear once you finish the drug. You may want to avoid wearing light colored clothing and contact lenses while you are taking this drug.
Yellowing of the eyes/skin can be a sign of liver problems that require immediate medical attention.
Mental/mood changes
Unusual tiredness
Flu-like symptoms: joint aches, fever
Rash
Persistent nausea/vomiting
Stomach/abdominal pain
Have you experienced adverse side effects with Rifampin? Were you able to continue taking the drug, or did you have to discontinue the drug? Rifabutin is another antibiotic that may be prescribed if you are experiencing adverse effects. Please share your experiences with the BNTM community.
Patricia,
Hello! You are most welcome! Please let us know if you have any specific questions after reviewing the educational materials. We are here to support you on your journey.
Thank you for the information on the webinar recording & other information! I greatly appreciate all the information & your responsiveness!
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.