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Recently diagnosed with MAC and nervous about meds
I’m recently diagnosed with MAC. I also have COPD, AFib and ongoing intestinal issues after surgery for a ruptured bowel. The side effects of the big 3 sound overwhelming to me. Most of them are problems that I already deal with on a daily basis. I’m 78 years old and have pretty much decided not to take the prescribed drugs, Ethambutol, Rifampin and Azithromyzin. Has anyone else made this decision? Extreme fatigue and coughing are my biggest problems right now. Any suggestions on alternative medications or pulmonary therapy? I’m so happy to have found this group for some insight on what I will be dealing with.
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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I’ve been thinking about that. My pulmonary doc is young. He’s treated me for about 4 years for Asthma, chronic bronchitis, and COPD. MAC has been a very recent diagnosis after bronchoscopy with biopsies. I’ve gotten a few “I don’t know” type answers from him so I don’t know if he’s treated many patients with my condition. I guess I should ask. Thanks for the advice.
Right now, I’m using my Albuterol inhaler 4-5 a day as needed, the nebulizer twice a day with a 2.5mg Albuterol solution and Symbicort, twice a day. I’ve noticed improvement with breathlessness and cough since starting on the nebulizer. I’m not taking the big 3 because of the effects for my other health issues.
Something else to think about "...those warnings on the internet..." -
Who is doing the warning? What are their qualifications?
Who is their audience? Young, healthy people suddenly experiencing shortness of breath? Heart patients where low oxygen sats can indicate a sudden drop in heart function? Asthma patients who cannot get their sats up to 90, even with nebs and inhalers? Or those of us who have compromised lungs, and whose bodies have adapted to lower oxygen levels?
A triage nurse in our clinic system once told me "If every person went to the ER when "the internet" told them to, out entire medical care system would break down!"
Sue
Excellent point. Most of what got my attention was during Covid when low oxygen levels were considered a dangerous symptom.
Many of the sites are reputable, such as this from ClevelandClinic: "When should I call my doctor? If you're using an oximeter at home and your oxygen saturation level is 92% or lower, call your healthcare provider. If it's at 88% or lower, get to the nearest emergency room as soon as possible."
Yale says something similar and Mayo says, "Values under 90% are usually considered low."
I have not been particularly worried since I am able to do my two mile walk along with my healthy neighbors, and do all other activities with minimal breathlessness, but I have been curious as to why the oximeter was giving me such varied readings. Was one more accurate than another? So it was reassuring to read that that sort of fluctuation is normal. Again, Thank you!
Anna
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1 ReactionWelcome to Mayo Connect. If you take a look around our support group, you will find a WIDE range of opinions about taking antibiotics to treat MAC.
In reality, there is sometimes an option for choices, but there is a definite protocol for when to move from the conservative measures - daily airway clearance, 7% saline nebs, and possibly herbal remedies - to the "Big 3" antibiotics.
You can find very clear guidance in this document:
https://www.ntminfo.org/wp-content/uploads/2019/06/NTMSupplementalGuide.pdf
Conservative measures can work, and there is often an option to "watch and wait" but at a certain point in the infection, the risk of not using antibiotics outweighs the side effects of the medication.
Have you been using airway clearance?
Sue
Hi I am 77 yrs old and been on the big 3 for 1 1/2 yrs although last April I was taken off ethambutol for eye problems. I was very reluctant to go on the meds because of all the side effects and being older but I feel very fortunate that my side effects have been minor compared to others. I did have nausea and diarrea but for the most part tollerable. I am now on Arikayce to replace the ethambutol and have had the most side effects with it but hope to get off soon. Everyone is different good luck.
Your message is encouraging in that you express that the treatment could be tolerated.
I know it is a big decision and everyone is different with different outcomes. I wish you the best in whatever choice you make.
If there were any success stories about Mullein Weed we’d all be taking it and this forum wouldn’t exist. The second opinion from a pulmonologist or infectious disease doctor would be very helpful to you. If you read thru these posts you’ll see that many of us have bronchiectasis and MAC infections. I’ve had both for about 7 or 8 years. I’ve had all the drug cocktails, and I can say they’re not great, but tolerable. I’m of the type that just can’t completely rid myself of the infection as it’s now colonized in my lungs. But keep reading about others treatment regimens for more experiences.
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1 ReactionWhat you say about Mullein Weed adds up.