Discussions

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. 

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

I have 3 strains of M. abcessuss (however it’s spelled) and MAC. Started in 2022, it took this long 2 find someone 2 actually want to treat it now. I have it in both lungs. I am 57, no energy & treatment includes Biaxin, Neuzyra and I.V. of Amikcin. I’m scared to put my body thru more upset & knowing I can lose hearing which is the only thing I have left. Of course the dr isn’t gonna tell or predict what’s gonna happen  I wanted to know the side effects of these meds and if possible any outcomes with anyone with same affliction

Hello! Learning about new medications and potential side effects can be overwhelming.  Do you have any questions about any of the medications that you are currently taking?  Below is a link to the basics of inhalers and nebulized medications: Medicines | Bronchiectasis and NTM Association

Hello! Springtime can bring on an increase in respiratory symptoms for some individuals. Many respiratory symptoms overlap in different respiratory disorders. Do you understand what causes wheezing?  The blog article below reviews the causes of wheezing and treatment options.

Wheezing and the Bronchiectasis/NTM Patient

Please let us know if you have any questions. 

I started taking the newly approved BE medicine Brensupri in February of 2026.  I'm interested in any feedback from others who are also using this medicine.

Thank you

If anyone is on Brinsupri, I would love to hear your expeience

My pulmonologist has recommended that I try Brensocatib which has just been released as a treatment for nonCF bronchiectasis.

NTM question

I started MAC treatment in March but I had to stop in June due to tachycardia. Now I'm waiting for my pulmonologist to come up w a new treatment plan. I've been off treatment for a week now. I'm worried about not being on treatment.

What treatment is available if the big 3 used for MAC causes tachycardia. Are there other options?

Common side effects include a metallic taste and an upset stomach . The link below goes into greater details about this drug: https://www.drugs.com/clarithromycin.html

Please let us know if you have any questions.

Ethambutol is best taken on an empty stomach, 1 hour before breakfast. Do take the full dosage of 2-3 pills at the same time- do not divide the dosage throughout the day.
Lab tests- a CBC( cell blood count) and a Biochemistry panel should be done monthly, especially checking for liver function.
It is important to be under the care of an ophthalmologist or a neuro- owhile on Ethambutol. It is recommended to read small print daily- if blurry vision occurs two days in a row- stop the Ethambutol and see your ophthalmologist as soon as possible.
( NTM Patient Course, Management of Medication Side Effects, Dr. Gwen Huitt)

It is recommended that you have your hearing checked at least every 6 months or much more frequently if you already have a hearing loss.

It is recommended that you take Rifampin at bedtime with a saltine cracker and a few sips of water.
Labwork is recommended once a month which includes a Cell Blood Count,( CBC) that checks your white blood cell count and your platelet count, ( clotting ).

A Biochem Panel, ( also known a as a SMA20) is done to check the biochemistry of your blood , which includes checking your liver function, sodium, potassium and other essential elements in your blood necessary for proper functioning of your body

The link below provides an interaction checker to alert you if there is any drug to drug interactions, drug and food interactions: https://www.drugs.com/drug_interactions.html

Different antibiotics are used to treat different types of respiratory infections. The link below reviews the basic function of antibiotics and describes the details for each antibiotic listed.

You will find that a certain antibiotic or a few antibiotics which agrees with you more than others . It is hard to remember the side effects of a drug that used years ago- a log to track your antibiotics will lessen the chance of repeating an antibiotic that did not agree with you in the past. https://www.drugs.com/article/antibiotics.html#a5

Using a pillbox lessens the chance of forgetting to take your medication or taking too much medication. Filling the pillbox on a weekly basis also allows you to see if you need to call for a medication refill in a timely manner. The link below reviews top rated pillboxes: https://www.goodhousekeeping.com/health-products/g63409243/best-pill-organizers/

The link below offers some suggestions for dealing with nausea: https://www.bronchiectasisandntminitiative.org/Learn-More/I-am-a-Patient-or-Caregiver/Coping-with-Nausea

It is important that you leases the nausea so you can eat nutritious meals that will assist you with healing.

Below is a link to a wallet card that will allow you to keep an organized list of your medications, allergies, vaccinations and sputum culture results. This will assist you with your health care provider visits, picking up drugs at the pharmacy, and morehttps://www.bronchiectasisandntminitiative.org/Portals/0/DownloadsLibrary/Files/WalletalletCard_Bronch_NTM_Web.pdf

I was very surprised to see a forum for this affliction. Had MAC since 2019 but Dr decided to recognize it only recently after having a bronchoscopy. Looking back at all my CT Scans it was there all the while & why it was chosen to be overlooked is a mystery. I have COPD but was complaining of severe shortness of breath that my pulmonologist said wasn’t from my lungs must be heart (I get ct scans every 6mos, looking back at those reports all have MAC all over them) but I listened, went thru a wild goose chase with heart drs & other specialists to come back to my lungs. A broncoscopy was ordered and now Dr says this is what’s goin on. I dwell on that this wouldn’t be so bad if he didn’t overlook it from the start & why would he? I just got out of a short hospital stay for acute hypoxemic failure now have to breath with oxygen & soon my MAC treatments will start, I am scared to death! I’m scared of the side-effects. My hearing is the Only good thing I have left and I read that this can be affected by the antibiotics. I need to know what to expect so I can brace for it, can someone please answer truthfully what I have to look forward to especially in the beginning stages of treatment

Probiotics play a crucial role in maintaining digestive health, immunity, and overall well-being. Choosing the right probiotic tailored to women’s specific needs can provide long-term health benefits.

https://www.deccanherald.com/dhsponsored-health/be...

I’ve started treatment for PA mucoid variant. My pulmo chose Cipro monotherapy. I was inspired by those who commented about this as common and about treatments that worked to “eradicate” or at least minimize it as an issue for them. The literature about mucoid PA is discouraging so I wanted more info on this if anyone can help. I also wouldn’t mind info on monotherapy Cipro vs addition of inhaled colistin or tobramycin. Feel pretty lousy but airway clearance helps. Thanks so much, Chri

Below is information from the CDC on pneumonia vaccines. You may be due for a repeat injection, after 5 years if you were under 65 when you received your first pneumonia vaccine . Please discuss the timeframe with your doctor: https://www.cdc.gov/pneumococcal/hcp/vaccine-recommendations/index.html