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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?

Below is information on the different types of common rashes:.

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. 

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!

I am so looking forward to listening to Michelle MacDonald, and learning more creative cooking tips.

There are so many valuable educational materials/ links posted previously by Brandon. I do hope that you will take the time to review the links.

Knowledge is power.  Knowledge empowers patients and prepares them for their healthcare provider appointments.

Many events are coming up on July 1st - I hope that you will be able to attend. Please check out the link posted by Alyssa.

If your looking for upcoming webinars visit the Events Calendar Page https://social.bronchandntm.org/events. Lots of amazing events are coming up!

This is so hard, I wish there were more options!

WOW! Thanks for the update. So you went to the skin Dr. to ask questions and they found skin cancer on your nose? 

For a full list of WBD event visit the Event calendar Page https://social.bronchandntm.org/events

KK,

I am glad you are getting the treatment you need for your skin cancer and your nose is doing great. Most skin cancers are very manageable, must maintain regular follow up visits for body checks. There are risks and benefits with every drug. Pulmonologists need to discuss the risks and benefits with patients who may need drugs such as Brinsupri who have other pre existing conditions. There is no “ one size fits all “ for drugs. 
I hope that you get to enjoy your summer. I am sure that your skin doctor advised you of all of the specific summertime precautions while outdoors in the sun, etc. 

Thanks for all the replies i never started taking the binsupri  not one dr or pharmacy could answer if there may be any interaction with all the minerals and vitamins   So i  read the side effects and one is skin cancer so i went to skin dr and low and behold i have skin cancer on my nose thank heaven's i never took the binsupri. Nose is doing great 😀

Ryan,

I hope that you will be able to get an OPEP device in the near future. Wishing you the very best.

Ethambutol is an antibiotic used for treating a NTM/ MAC infection. Individuals are advised to take with or without food; do not take with aluminum-containing antacids.

Potential Side Effects

• Rash
• GI upset- do not forget to tell your healthcare provider if you have lost weight over time
• Neuropathy
• Eye problems, such as Optic Neuritis, are seen more in older patients with kidney failure issues.  An episode of optic neuritis typically begins with eye pain, especially with eye pain- this appears like a thumbprint or a smudge that blurs the vision. Within a week, this may progress to a darkening of the visual fields. Reading can become difficult.  Many patients notice that colors appear less bright in the affected eye. It is important to schedule and maintain appointments with an ophthalmologist experienced in Optic Neuritis. Report any changes in vision to your doctor immediately and stop taking the drug.

I took Ethambutol in the past and maintained regular visits with a neuro-ophthalmologist. I was fortunate to be able to take this drug without any adverse side effects. If you have taken Ethambutol, please share your experience with the community.

http://Brighamandwomens.orgneurology/neuro-opthamology/optic-neuritis

Okay thanj you for your response

Hi Patricia,

We have a couple of great places where you can watch recordings of previous webinars and educational presentations. Once we have the recording up from our last Coffee Break, we will post in the activity feed, with a link to the recording.

I've included links below to our Resource Library, where you can browse videos and other educational materials, as well as our Bronchiectasis and NTM Association YouTube channel, which has many of our recorded webinars and presentations available to watch at your convenience.

Here is a link to take you to our Resource Library:

https://social.bronchandntm.org/resources?mediaType=3&audience=patients

And here is our YouTube Channel to view additional content:
https://www.youtube.com/@BronchandNTM

Hi Ryan, thank you for reaching out. We did send you an email, but I also wanted to respond here in case it helps others. Unfortunately, the Bronchiectasis and NTM Association are not aware of a program that provides donated OPEP devices, and we're sorry we can't be of more help directly. You may want to check with your pulmonologist, local hospitals, respiratory clinics, or the Lung Center of the Philippines (https://lcp.gov.ph/ ), as they may know of local assistance programs, patient support organizations, or equipment donation opportunities. Sometimes healthcare providers are aware of resources that aren't widely advertised. Wishing you all the best, and please keep us posted.

Hello, Can you share where we can find the webinar recordings? I'm interested in listening to the topic on medications again. Thank you very much!

thank you!

Brandon,

Happy Monday back to you and the community!  It is a beautiful day in my area-70s with low humidity are the perfect temperature for me. Listening to our bodies, not denying our symptoms is of utmost importance. I used to push myself too much throughout the summer months , I pay more attention to my body now and rest as needed. High heat, high humidity, high dew points are not good for me. I hope that you enjoy beautiful summer days throughout the remainder of the month. If you are not feeling well, we are always here to support you on this site, via an email or a phone call.