1. < MAC & Bronchiectasis

Non treatment of MAC

Posted by deemaniduenas @deemaniduenas, Oct 26, 2023

Does anyone know what are the disadvantage of NOT being treated for MAC?
In February 2023 I started taking 3 antibiotics 3 times a day but by September 2023 I stopped taking them. One of the antibiotic was causing vision loss. It was mandatory that all 3 meds had to to taken together (all or none) for at least one year. Results of CT compared from May 2023 & August 2023 indicated that additional New nodes or spots were present. So it seems that the treatment wasn't working.

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dwood003 | @dwood003 | Oct 29, 2023
In reply to @robinzemp "I am just finishing my first month on Arikayce (plus Azithromycin and Nuryva). I received a..." + (show)
@robinzemp

I am just finishing my first month on Arikayce (plus Azithromycin and Nuryva). I received a notice from Express Scripts that I did not qualify because I had not had 6 months treatment, but the next day I received a call that it had been approved. Apparently my ID doctor expected that and sent the appeal. He had told me that would happen. Either the specialty pharmacy or the manufacturer told me the Express Scripts would give me a copay of $77, but they enrolled me in a plan that allows me to have a copay of $10 per month. I have been told that they are now allowing Arikayce to be used initially as it is having good results.

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Wow! That is encouraging. I have an appointment with my ID Dr. tomorrow, I will relay that information. I have Tricare For Life. Express Scripts is their agent, this medication requires TC for L pre-approval. My 20 yrs military service is the source of all my lung problems. I feel betrayed by their denial. If my Dr. doesn't get an appeal, the Govenor of my state is ex-military Navy as I was, I will contact him.
Thanks
Don

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pop55 | @pop55 | Oct 29, 2023

I was diagnosed in 2007 with Bronchiectasis and in April 2020 with Mac. I have not taken any antibodics. About 6 months ago I had 400 Colonies and I was smear positive. I started working really hard at airway clearance 3 times a day. My latest sputum culture from National Jewish showed 40 colonies and I was smear negative. I really believe airway clearance is the key. I use 7% Saline, the VEST and the Aerobika. I also do active cycle breathing. I am in another support group with over 4000 members and there are many people who are doing well with just airway clearance.

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suzyqueue | @suzyqueue | Oct 30, 2023
In reply to @dlynn1210 "Remember we are all different. You cannot disagree,for all of us. For me after 4 years..." + (show)
@dlynn1210

Remember we are all different. You cannot disagree,for all of us. For me after 4 years the cure became worse than the disease. I am currently in Denver seeing the doctors at NJH. They have done a bronscopy and will test to see if my body has grown resistant to the three meds. My hearing has taken a serious loss and my sight a small downward trend all due to the three meds. They told me for no do NOT take the meds. My pulmonologist ordered 3% saline - for almost 4 years I used 3%. Reading 7% was better on Mayo I found it much more effective. MAC is rare and I have found that many pulmonologist know little about it. We learn as we go. Our bodies are each different and so should be our treatment!

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With all due respect, I can and do disagree.....especially for myself and the fact that without lungs, sight and hearing are mute. The post I was replying to ask "for any disadvantages" and that's what I replied with. I as well have consulted with NJH along with my Chief Pulmonologist and ID's. All involved have agreed that treatment should be started sooner than later. Best wishes to you and what works for you.

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dlynn1210 | @dlynn1210 | Oct 30, 2023

I am currently at NJH - it is snowing in Denver! I was told there is a good chance that I have built up a resistance to the meds. My pulmonologist back home took me off the meds 3 months ago to give my body a rest. My doctor at NJH told me Friday not to start taking them again right now. As I said, I am not telling you or anyone what to do but like you are deciding for yourself, I will follow the doctor’s recommendation here at NJH. I was diagnosed 4 years ago and started treatment then. Four years on the three meds.

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kwi | @kwi | Oct 30, 2023

I agree that airway clearance with 7% does help and can keep MAC under control for some, maybe not for everyone. Many people on this forum say so from their personal experience. My MAC has not showed up on my last sputum samples (including a three day collection at NJH). I am not have not been on antibiotics. Everyone is different!

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msk | @msk | Oct 31, 2023
In reply to @dulwich "Miriam My doctors did not expect improvement in the CT with treatment but hopefully no worsening...." + (show)
@dulwich

Miriam
My doctors did not expect improvement in the CT with treatment but hopefully no worsening. My cultures have been free of MAC for two years but CT no better
Have you had recent cultures? This always seems a more reliable indicator of active disease, at least for me as I never had symptoms

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Thanks for your thoughts. My cultures are negative. Saw my pulmonologist yesterday and he said yes my ct isn't worst. Will continue to monitor every 6 mo due to the amount of nodules i have. Making sure that they are not cancerous. I had neck cancer so i worry about getting another cancer. i thought the meds would clear it all but i was wrong. Need to enjoy my life and continue the airway clearance to keep infection from growing.

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msk | @msk | Oct 31, 2023
In reply to @sueinmn "Oh Miriam, I know how frustrated you must feel. Yes, sometimes the treatment doesn't eliminate the..." + (show)
@sueinmn

Oh Miriam, I know how frustrated you must feel. Yes, sometimes the treatment doesn't eliminate the infection - as in my case and possibly yours as well. But lowering the infection is sometimes enough - I have managed to stay off the meds for 4 years now with airway clearance, exercise and a good diet. Also by keeping my asthma well controlled & avoiding respiratory bugs.
It will be interesting to hear what the doctor has to say. After the second post-treatment but still-positive culture, my doc has decided as long as my bronchiectasis remains stable and I don't feel sick, we just wait.
Do you feel healthy (other than the aftereffects of the meds)? And is your cough gone?
Will you let me know what your doctor advises?
Sue

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Hi Sue
Met my pulmonologist yesterday and had a good conversation about my lungs. He told me that yes my ct still showed the infection but culture are negative. Like you mentioned as long as i am not feeling sick we continue to monitor, having ct every 6 mo and see what changes are happening or not. He says that i have lots of nodules, they wax and wane, but need to follow up in those due to my neck cancer. I worry about that. He told me to enjoy my life and do the airway clearance, excercise, my albuteral, and use my flovent when i feel wheezing to clear it. I just needed to realize that this will be with me for the rest of my life. I thought the meds would eliminate it.
Glad to be in this group to be able to share how we feel without being judged. Thanks for your thoughts. On my way to play golf and walk its my excercise! Life is good and all will be well😘

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 31, 2023
In reply to @msk "Hi Sue Met my pulmonologist yesterday and had a good conversation about my lungs. He told..." + (show)
@msk

Hi Sue
Met my pulmonologist yesterday and had a good conversation about my lungs. He told me that yes my ct still showed the infection but culture are negative. Like you mentioned as long as i am not feeling sick we continue to monitor, having ct every 6 mo and see what changes are happening or not. He says that i have lots of nodules, they wax and wane, but need to follow up in those due to my neck cancer. I worry about that. He told me to enjoy my life and do the airway clearance, excercise, my albuteral, and use my flovent when i feel wheezing to clear it. I just needed to realize that this will be with me for the rest of my life. I thought the meds would eliminate it.
Glad to be in this group to be able to share how we feel without being judged. Thanks for your thoughts. On my way to play golf and walk its my excercise! Life is good and all will be well😘

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Miriam I am so happy for you. If you have wheezing at times, does that mean you also have asthma? If so, there is a new protocol for treatment that replaces the albuterol nebs and [at least for me] 95% of the need for a rescue inhaler.
It is called Symbicort. It is a combination of formotorol and budosenide.
Sue

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gus46 | @gus46 | Nov 5, 2023
In reply to @dorma "After almost 2 years, and reading many comments on this site, I am wondering how I..." + (show)
@dorma

After almost 2 years, and reading many comments on this site, I am wondering how I should interpret all this information! After 14 months on the big three, I stopped taking them. After several weeks I started getting extremely weak again, and was having to lie down more often. I am unable to do some of my normal 'chores' at home. BUT...I now wonder if this is actually due to stopping the meds, or something else. About 4 years ago I developed this severe weakness, and was having to sleep MUCH more than normal. It is at best, depressing. I finally got back on the meds, but NOT the Rifampin. [eye problems, and hearing loss] I see very little, if any progress towards feeling better. **Can anyone tell me if the weakness and fatigue are actually due to the MAC?

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Donna,
Has your doctor checked your thyroid level? I was experiencing fatigue, hot flashes, severe night sweats. I thought it was the MAC worsening, but it turns out that my prescription for levothyroxine was too high. Apparently, one’s need can change over the years. It’s improved now that the prescription has been reduced; the night sweats aren’t gone, but they are reduced. My blood pressure is normal (whereas it had been very low). Good luck!

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1 reply
dorma | @dorma | Nov 5, 2023
In reply to @gus46 "Donna, Has your doctor checked your thyroid level? I was experiencing fatigue, hot flashes, severe night..." + (show)
@gus46

Donna,
Has your doctor checked your thyroid level? I was experiencing fatigue, hot flashes, severe night sweats. I thought it was the MAC worsening, but it turns out that my prescription for levothyroxine was too high. Apparently, one’s need can change over the years. It’s improved now that the prescription has been reduced; the night sweats aren’t gone, but they are reduced. My blood pressure is normal (whereas it had been very low). Good luck!

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Thank you. My thyroid has been checked many times, and they always say it is normal, even though I have symptoms to say otherwise. But I appreciate your note.

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