1. < MAC & Bronchiectasis

Delaying treatment question

Posted by meadows @meadows, Sep 30, 2023

Are any out there who delayed treatment and wish they had not. I have 0 symptoms despite the broncoscopy results being positive. Obviously one has to discuss this with their doctor, and eachpatient is different, but I'd love to hear from others who had no symptoms to see if they put off treatment as advised by their doctors, etc. . Thanks very much.

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bellsina71 | @bellsina71 | Oct 2, 2023
In reply to @dispatchpat "I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m..." + (show)
@dispatchpat

I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m going to New York City doctors who are in rolled and running centers of excellence for Bronchiectasis treatment and MAC. I went for a second pulmonary opinion to the actual head of research and same discussions same Recommendation. I did not understand it I pleaded for a little better understanding of why. I said I have physician relatives who will not understand why my doctors are delaying treatment. This second opinion doc said tell them “you are treating. The things you’re already doing airway clearance , looking into GERDS precautions, daily exercise and doing all you can to avoid further infection… These are the first line of treatment.“ This moment in time, it is literally true that the treatment is worse than the disease. In my case. Very slight Bronchiectasis. Also, in about a year this very successful trial drug will likely become available and it will be very helpful in delaying lung damage. DPP-1 Inhibitor Brensocatib in Bronchiectasis.

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It is unbelievable that they would make anyone wait to get treatment with this. What would be the point of that? Either it's going to stay the same or it's going to get worse. I don't think this clears up on its own. I suppose it could, but what are the chances? Especially if you have other things like GERD, I have read before that a lot of doctors take that wait and watch approach. I read on the American lung association website that they want to see if the disease is going to progress. Well, I think they can count on that eventually. When you see something that's wrong, you fix it. I would demand the I'm put on something to be really honest. If there's anyone this is happening too, you should doctor shop until you find someone that's going to treat you. Sometimes we have to advocate for ourselves to get what we want. It shouldn't be the case. If you're diagnosed with something that's treatable. There are some people that don't want to take the antibiotics because they don't want the side effects. I've only been on only 2 antibiotics and they're doing studies now to see if 2 antibiotics will work about the same as being on all 3 antibiotics. I recommend to people that they start off on 2 antibiotics and to use the Rifampin if the 2 others aren't working on their own. I think that is the drug that causes the most harm to people and the most side effects. I could be wrong but I've been on azithromycin and ethambutol with virtually no side effects and I take it in the morning on an empty stomach. I only started taking airikayce 3 months ago and at that time I still had a full-blown cavity, but it had cleared up all around the cavity and the walls had become really thin. After adding airikayce and continuing the two drug regiment. I am completely cleared now, it has completely resolved. Although the doctor is going to keep me on the antibiotics for another 6 months and watch and make sure nothing comes back. I know there's people with a lot of problems with all three of these antibiotics but I recommend to those people to talk to your doctor and to just start off on two and see how that goes and then definitely add the antibiotic nebulizing treatment if possible. I know for people that can't afford it you can apply for financial help through them and they will pay for
almost all of it.😀 Thanks for your post above! More people need to know that they don't need to go along with the wait and watch approach. I don't think it's in anyone's best interest.

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bellsina71 | @bellsina71 | Oct 2, 2023
In reply to @meadows "Thanks very much for telling me about what you have gone through. I had heard that..." + (show)
@meadows

Thanks very much for telling me about what you have gone through. I had heard that the doctors sometimes do just two anti-biotics for some people. I have no symptoms, so I'm not sure what my dr. will say the next time I see him to get the broncoscopy results. I'm glad you have been helped! Thanks again.

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I had no symptoms either, I still don't and I have a large cavity, I should say I had a large cavity because it's taking 6 months but my Mac has resolved as I mentioned above. But, if you can get on treatment. I recommend that. I also had a CT scan at the hospital, and of course when I had that done and they saw a mass like they saw on my CT which was actually an abscessed cavity, they thought it was cancer! Thank God it wasn't!! I do recommend that you start some form of treatment. Even if it's just 2 antibiotics; azithromycin and ethambutol. Like I mentioned before. If your doctor's taking the wait and watch approach I would find another doctor. I'll tell you why.. I had and have absolutely no symptoms but I had a cavity that was over 3" large on my upper right lobe. If I wouldn't have gotten pneumonia with it and started coughing a blood that night I would have never have had a reason to have a CT scan and wouldn't have known I had this so the cavity would have gotten bigger, not smaller.

If you do decide not to go through a treatment, make sure you are being watched like a hawk. Stay away from smoke, even barbecue smoke or smoke from bonfires.

The American lung association says that the only reason to do a wait and watch approach is to see if the disease doesn't progress at all. More than likely it is going to progress though. And you don't want it to do more damage.

Of course your treatment is up to you, whether you get it or not right now. But you don't want to have regrets either. I just wanted to add this to my previous post! Good luck!😀
Angela

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Rick | @rstel7272 | Oct 3, 2023
In reply to @bellsina71 "So I'm the same as you, no symptoms except for one night. I started coughing up..." + (show)
@bellsina71

So I'm the same as you, no symptoms except for one night. I started coughing up blood like I mentioned above, and the reason for that was that I ended up getting Klebliessa pneumonia with the Mac. It took bronchoscopy to diagnose both. So as I was getting more and more sick from the pneumonia, in my head and in my doctor's perspective because they saw a mass on my lung (and found cancer on my intestine) I thought the end was near! You hear about people finding out they have lung cancer and then getting really sick quickly. That's what I thought was happening. As soon as they found that mass from the CT scan I gradually started coughing more and I could hear myself wheezing and coughing a bunch of crap up. That was all from the pneumonia though, and once they put me on the antibiotics it started clearing the pneumonia up and that's about the time they figured out I have Mac because it takes so long to grow in the petri dish. It takes a weeks for them to figure that out!!
Regarding how long you've had it, I was going to tell you that my cavity was pretty large. I'm not sure if you have a cavity or how big of an area is affected, but my cavity was around 3 in and my doctor looked at a CT scan I had done in 2011 and thought that I may have started developing this back then. The reason that he thought that was there was many small little nodules all in that area that I ended up having the cavity. Infectious disease doctors see this often enough where they can determine to some degree how long you've had it. He said I've at least had this 5 years, but he said he wouldn't be surprised if I've had it 10 + the nodules right in the area that I got the cavity is very telling!!!
You probably had this for a while. All depending on how large of an area of your lung is being affected. It's very slow growing. Have you had any other CT scans done in recent years they could compare? You could ask your doctor what they believe. It is slow growing so a large area would take years, small area months to a couple years!!

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Bellona, wow are our cases similar! My first diagnosis and treatment was at age 60

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1 reply
suzyqueue | @suzyqueue | Oct 3, 2023

I hadn't delayed on purpose, but waiting for particular results, I had a 10 cm cavity form within 30 days. The NTM site that is referred to on here strongly suggests starting treatment asap. I wish I had started sooner. The damage depending on strain can be dangerous

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2 replies
meadows | @meadows | Oct 3, 2023
In reply to @suzyqueue "I hadn't delayed on purpose, but waiting for particular results, I had a 10 cm cavity..." + (show)
@suzyqueue

I hadn't delayed on purpose, but waiting for particular results, I had a 10 cm cavity form within 30 days. The NTM site that is referred to on here strongly suggests starting treatment asap. I wish I had started sooner. The damage depending on strain can be dangerous

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Thanks very much for writing. I hope the treatments help you once you can begin them.

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1 reply
Renee | @rchildress | Oct 3, 2023

Personal decision we have to make for ourselves but I choose to take only Azithromycin and all kinds of immune building supplements to fight mine. They found that I had MAC after they discovered I had pneumonia when they were doing a $50 heart scan that our hospital was offering. (heart is in great shape but found pneumonia). Took antibiotics for 10 days, CT in 3 weeks which still showed infection, then bronchoscopy in 3 more weeks, then 6 weeks later results showed MAC. One pulmonologist said do nothing but watch it, another suggested big 3 but would let me just take azithromycin if I chose to do that. infectious disease doctor suggested big 3 but said I could do what I chose to do so I chose to just take azithromycin and also take all kinds of immune building supplements and 6 weeks later my CT showed cavities but no infection That being said, I am going to continue taking azithromycin and supplements to hopefully keep it away.
I am happy that I chose not to start the big 3 months ago and apparently what I choose to do is working. Of course, I am a very determined woman that stays active with mowing my acreage and staying busy doing physical labor around my house.
All in all. I am happy with my decision and think I’ll make it many healthy years doing what I am doing.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 3, 2023
In reply to @dispatchpat "I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m..." + (show)
@dispatchpat

I, too, was dismayed at Pulmonologist and infectious disease. Doc recommendations to wait and watch. I’m going to New York City doctors who are in rolled and running centers of excellence for Bronchiectasis treatment and MAC. I went for a second pulmonary opinion to the actual head of research and same discussions same Recommendation. I did not understand it I pleaded for a little better understanding of why. I said I have physician relatives who will not understand why my doctors are delaying treatment. This second opinion doc said tell them “you are treating. The things you’re already doing airway clearance , looking into GERDS precautions, daily exercise and doing all you can to avoid further infection… These are the first line of treatment.“ This moment in time, it is literally true that the treatment is worse than the disease. In my case. Very slight Bronchiectasis. Also, in about a year this very successful trial drug will likely become available and it will be very helpful in delaying lung damage. DPP-1 Inhibitor Brensocatib in Bronchiectasis.

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Your second doc is correct. In less severe stages, "wait and watch" when combined with airway clearance and other precautions IS a form of treatment.
By the way, these actions can in fact help you convert to "negative" for MAC in some cases. Or keep the numbers and location of the bacteria limited and contained for a long period so that the 3-antibiotic regimen is never needed.
Here is a very good, if somewhat long, video about this from National Jewish Health, recorded just this year.
https://www.youtube.com/watch?v=bcvHKHzi4Q0&t=1388s
I hope you can manage to stay healthy with preventive measures!
Sue

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1 reply
bellsina71 | @bellsina71 | Oct 3, 2023
In reply to @rstel7272 "Bellona, wow are our cases similar! My first diagnosis and treatment was at age 60" + (show)
@rstel7272

Bellona, wow are our cases similar! My first diagnosis and treatment was at age 60

Jump to this post

Did they ever figure out why you got it? Or speculate? I saw an immunologist and needed so many tests, they couldn't figure out any reason I would have gotten this. I don't have anything that has made me immune compromised, and they don't think me having cancer did it. Both times. I didn't have to have chemo or anything.. I find having this to be the most strangest thing yet.😳

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1 reply
sweethighland | @sweethighland | Oct 3, 2023
In reply to @rchildress "Personal decision we have to make for ourselves but I choose to take only Azithromycin and..." + (show)
@rchildress

Personal decision we have to make for ourselves but I choose to take only Azithromycin and all kinds of immune building supplements to fight mine. They found that I had MAC after they discovered I had pneumonia when they were doing a $50 heart scan that our hospital was offering. (heart is in great shape but found pneumonia). Took antibiotics for 10 days, CT in 3 weeks which still showed infection, then bronchoscopy in 3 more weeks, then 6 weeks later results showed MAC. One pulmonologist said do nothing but watch it, another suggested big 3 but would let me just take azithromycin if I chose to do that. infectious disease doctor suggested big 3 but said I could do what I chose to do so I chose to just take azithromycin and also take all kinds of immune building supplements and 6 weeks later my CT showed cavities but no infection That being said, I am going to continue taking azithromycin and supplements to hopefully keep it away.
I am happy that I chose not to start the big 3 months ago and apparently what I choose to do is working. Of course, I am a very determined woman that stays active with mowing my acreage and staying busy doing physical labor around my house.
All in all. I am happy with my decision and think I’ll make it many healthy years doing what I am doing.

Jump to this post

Azithromycin dose? How many days or months you have to take?

REPLY
Rick | @rstel7272 | Oct 3, 2023
In reply to @bellsina71 "Did they ever figure out why you got it? Or speculate? I saw an immunologist and..." + (show)
@bellsina71

Did they ever figure out why you got it? Or speculate? I saw an immunologist and needed so many tests, they couldn't figure out any reason I would have gotten this. I don't have anything that has made me immune compromised, and they don't think me having cancer did it. Both times. I didn't have to have chemo or anything.. I find having this to be the most strangest thing yet.😳

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No, I've seen 6 pulmonologist's, 100's of tests. Alpha-1 may have contributed. Scar tissue has made a mess of the lungs. Currently treating aspergillus.

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