Discussions

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

Are you aware of new therapies for COPD or bronchiectasis that have just been approved or may be approved soon? If so, please share what you are hearing.

There are several different types of this vaccine and it is often confusing to many people. Please scroll down to the bottom of the link below for the guidelines for the adult population:https://www.cdc.gov/vaccines/vpd/pneumo/hcp/who-when-to-vaccinate.html#adults-over-65

The link below from the CDC, reviews the different types of flu vaccinations: https://www.cdc.gov/flu/prevent/keyfacts.htm#Flu-Vaccine-Options

The information below , from the CDC reviews the importance of getting the flu vaccination and other relevant information: https://www.cdc.gov/flu/pdf/freeresources/general/strong-defense-against-flu.pdf

The link below provides an infographic on Shingles and the Shingles vaccination: ShinglesFlyer 2.pdf

The link below reviews the chances/ risks of people who are at higher risk of having a negative reaction to the vaccinations: https://www.cdc.gov/vaccines/hcp/acip-recs/general-recs/contraindications.html

ACIP Contraindications Guidelines for Immunization | CDC

Contraindications and Precautions: General Best Practice Guidelines for Immunization. Advisory Committee on Immunization Practices (ACIP)

Combination Medications- Some inhalers and nebulizer treatments are available as combination therapy- one inhaler or nebulizer treatment contains more than one type of medication. Short-Acting Anticholinergics plus Short-Acting Bronchodilators: These medications combine the actions of the two different types of bronchodilators into one inhaler or nebulizer solution. A few common short-acting anticholinergics and short-acting bronchodilators include:

• Duo-Neb® (Ipratropium Bromide/Albuterol)- nebulizer
• Combivent Respimat® (Ipratropium Bromide/Albuterol)- inhaler
• Combination Long-Acting Bronchodilators and Long-acting Anticholinergics: These inhalers contain both a long-acting bronchodilator and a long-acting anticholinergic. These medications work by relaxing the muscles in your lungs, helping to relieve shortness of breath and prevent exacerbations. These medications usually last 12 to 24 hours and can be used once or twice daily. A few common combination long-acting bronchodilators and long-acting anticholinergics include:

• Anoro Ellipta® (Umeclidinium / Vilanterol)- inhaler
• Stiolto Respimat® (Tiotropium / Olodaterol)- inhaler

Combination Long-acting Bronchodilators and Inhaled Corticosteroids: These combination inhalers can be helpful for people who have frequent exacerbations. These medications last 12 to 24 hours and are taken once or twice a day. A few common combination long-acting bronchodilators and inhaled corticosteroids include:

• Advair® (Fluticasone / Salmeterol)- inhaler
• Breo Ellipta® (Fluticasone Furoate / Vilanterol)- inhaler
• Symbicort® (Budesonide / Formoterol)- inhaler

Combination Corticosteroid, Long-Acting Anticholinergic Bronchodilators, plus Long-Acting Bronchodilators (“Triple Therapy”): These medications relax the muscles around your bronchial tubes and decrease the inflammation in your lungs, reducing your respiratory symptoms and helping to prevent exacerbations. A few common triple therapy inhalers include:

• Trelegy Ellipta® (Fluticasone /Umeclidinium/ Vilanterol)- inhaler
• Breztri Aerosphere® (Budesonide/Glycopyrrolate/ Formoterol Fumarate)- inhaler

Long-acting Anticholinergics: these meds work by reducing the bronchoconstriction in your lungs, helping you to breathe easier and feel less short of breath. Long acting anticholinergics do not work quickly. These medications may help prevent exacerbations in some people. They last for 12-24 hours and are usually taken once or twice a day by inhaler or nebulizer. A few common drugs in this category include:

• Incruse Ellipta® (Umeclidinium)- inhaler
• Spiriva Handihaler® (Tiotropium Bromide)- inhaler

Short-acting Bronchodilators: These meds work quickly to relax the muscles around your bronchial tubes, helping to relieve shortness of breath. These meds are inhaled into the lungs from an inhaler or nebulizer. You often begin to feel relief within a few minutes of using your inhaler or nebulizer.

Common short-acting bronchodilators include:

• Albuterol- inhaler and nebulizer
• ProAir® (Albuterol) inhaler
• Proventil® (Albuterol) inhaler
• Ventolin® (Albuterol) inhaler
• Xopenex® (Levalbuterol) inhaler and nebulizer