Early Christmas gift - stopping the "Big 3"

Posted by Sue, Volunteer Mentor @sueinmn, Dec 19, 2019

I am ever so thankful, and a little scared. Since summer, I have been on the antibiotics daily, because after a year of treatment my sputum cultures continued to be positive, I was symptomatic, and my lung CT showed increased evidence of infection. Fast-forward to December, culture still positive, but cough gone, sputum clear, CT scan clear, and experiencing side effects from daily meds… My infectious disease doc, in consultation with NJH, decided to STOP the antibiotics, a conclusion supported by my new pulmonologist. So now, we "wait and see" if any symptoms come back. I will continue ti use my inhaler & asthma meds, neb with saline & use the Aerobika. And reevaluate in the Spring. I know I will always have the MAC within me, please send good thoughts & prayers that good lung hygeine practices, good nutrition and continued health will keep it from taking over again!
Sue

Yes. Good luck Sue.
If you don't mind, what are your symptoms from long term antibiotics? I have been on 2 (couldn't tolerate rifampin) 3x per week since March. I am one of the lucky ones because I have been negative since June. The protocol requires that I continue on them until June but I am having more and more colon issues and wonder if the antibiotics have a cumulative effect or if something else is going on. Thanks for any info.

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@rits

Yes. Good luck Sue.
If you don't mind, what are your symptoms from long term antibiotics? I have been on 2 (couldn't tolerate rifampin) 3x per week since March. I am one of the lucky ones because I have been negative since June. The protocol requires that I continue on them until June but I am having more and more colon issues and wonder if the antibiotics have a cumulative effect or if something else is going on. Thanks for any info.

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@rits Mostly gut issues – stomach pain, frequent loose stools or actual diarrhea, nausea. Also fatigue & zero energy. It is worse if I fail to take probiotics and eat yogurt for a few days. It also got worse this summer when I had to start taking the meds daily. Both the ID doc and lung doc confirmed this week that the longer I am on the meds, the worse the symptoms are likely to be. It was a big part of the reason for stopping them now even though I have never converted to negative sputum cultures.
Do you use a probiotic and/or live-culture yogurt to help replenish the gut bacteria? Have you talked to your doctor(s) about possibility of stopping sooner than the 12-month mark?

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Thanks Sue
I had colon cancer surgery 4 years ago and I've had problems ever since. I have tried probiotics in the past with no help but am trying again. I take Imodium and Gasx as maintenance drugs. I'm accustomed to diarrhea, gas and constant urge to go but everything is worse lately. Much worse.

There isn"t much out there about side effects of long term antibiotic use. What I found says they the body adjusts so I assumed the side effects are worse in the beginning and get better.

I'm looking for information of worsening side effects from antibiotics taken long term. I'm trying to figure out what is causing my increased side effects and the antibiotics are on and off my list because it wasn't so terrible until the last few weeks.

I hope your doctors find something that will work for you without bad side effects. Rita

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Terrific Sue. Happy thoughts on the next Express coming your way. Don

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@rits

Thanks Sue
I had colon cancer surgery 4 years ago and I've had problems ever since. I have tried probiotics in the past with no help but am trying again. I take Imodium and Gasx as maintenance drugs. I'm accustomed to diarrhea, gas and constant urge to go but everything is worse lately. Much worse.

There isn"t much out there about side effects of long term antibiotic use. What I found says they the body adjusts so I assumed the side effects are worse in the beginning and get better.

I'm looking for information of worsening side effects from antibiotics taken long term. I'm trying to figure out what is causing my increased side effects and the antibiotics are on and off my list because it wasn't so terrible until the last few weeks.

I hope your doctors find something that will work for you without bad side effects. Rita

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@ritz Hi Rita. So sorry to hear you are having G.I. issues. That is def no fun. Sending you a big cyber hug, and I hope you get to feeling better soon.

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@sueinmn

@rits Mostly gut issues – stomach pain, frequent loose stools or actual diarrhea, nausea. Also fatigue & zero energy. It is worse if I fail to take probiotics and eat yogurt for a few days. It also got worse this summer when I had to start taking the meds daily. Both the ID doc and lung doc confirmed this week that the longer I am on the meds, the worse the symptoms are likely to be. It was a big part of the reason for stopping them now even though I have never converted to negative sputum cultures.
Do you use a probiotic and/or live-culture yogurt to help replenish the gut bacteria? Have you talked to your doctor(s) about possibility of stopping sooner than the 12-month mark?

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Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm such a whooos that I wanted a doctor to tell me to stop. But my wonderful bronchiectasis/ntm specialist pulmonologist left although she had assured me that she would still be at U if Chicago for my January appointment. I have made an appointment with my original pulmonologist who does have a specialty in bronchiectasis but referred me to the ntm one when my sputum turned up positive for MAC. She had not put me on the antibiotics or Arikayce.

I woke up this morning coughing up gobs of mucus which has become much, much worse since I started Arikayce last August. Then straight to the bathroom and pain. I finally started thinking rationally and your situation really helped. Thank you so much for sharing!

On Dec 3, I saw a report in mychart about my Oct sputum sample. I had seen good reports from samples since the summer but this one said: culture: no growth for 45 days. Final report. (I think that means they are finished looking at it because there is nothing there!)

What is the worse thing that can happen if I stop? The organisms will come back sooner then if I complete the protocol. I can deal with that if and when it happens.What is the best thing that can happen? The antibiotics are causing my worsening bowel issues and the Arikayce is causing my worsening mucus/breathing issues and I will be able to get my life back.

Tonight will be the first Friday that I will not be taking azithromycin and ethambutol since March.

I'm with you these holidays, Sue. Thank you!

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@rits

Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm such a whooos that I wanted a doctor to tell me to stop. But my wonderful bronchiectasis/ntm specialist pulmonologist left although she had assured me that she would still be at U if Chicago for my January appointment. I have made an appointment with my original pulmonologist who does have a specialty in bronchiectasis but referred me to the ntm one when my sputum turned up positive for MAC. She had not put me on the antibiotics or Arikayce.

I woke up this morning coughing up gobs of mucus which has become much, much worse since I started Arikayce last August. Then straight to the bathroom and pain. I finally started thinking rationally and your situation really helped. Thank you so much for sharing!

On Dec 3, I saw a report in mychart about my Oct sputum sample. I had seen good reports from samples since the summer but this one said: culture: no growth for 45 days. Final report. (I think that means they are finished looking at it because there is nothing there!)

What is the worse thing that can happen if I stop? The organisms will come back sooner then if I complete the protocol. I can deal with that if and when it happens.What is the best thing that can happen? The antibiotics are causing my worsening bowel issues and the Arikayce is causing my worsening mucus/breathing issues and I will be able to get my life back.

Tonight will be the first Friday that I will not be taking azithromycin and ethambutol since March.

I'm with you these holidays, Sue. Thank you!

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@rits, I would discuss this decision with your dr before just willy-nilly stopping your meds. Stopping too soon could cause the mac to morph into one that is resistant to the drug you were just on. Then, if/when it returns, that med may no longer work for you. You may want to talk to your dr about taking maintenance antibiotics, like 10 day a month type. That is the regimen I am on and it keeps the cooties away.

Liked by Brenda R.

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@rits

Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm such a whooos that I wanted a doctor to tell me to stop. But my wonderful bronchiectasis/ntm specialist pulmonologist left although she had assured me that she would still be at U if Chicago for my January appointment. I have made an appointment with my original pulmonologist who does have a specialty in bronchiectasis but referred me to the ntm one when my sputum turned up positive for MAC. She had not put me on the antibiotics or Arikayce.

I woke up this morning coughing up gobs of mucus which has become much, much worse since I started Arikayce last August. Then straight to the bathroom and pain. I finally started thinking rationally and your situation really helped. Thank you so much for sharing!

On Dec 3, I saw a report in mychart about my Oct sputum sample. I had seen good reports from samples since the summer but this one said: culture: no growth for 45 days. Final report. (I think that means they are finished looking at it because there is nothing there!)

What is the worse thing that can happen if I stop? The organisms will come back sooner then if I complete the protocol. I can deal with that if and when it happens.What is the best thing that can happen? The antibiotics are causing my worsening bowel issues and the Arikayce is causing my worsening mucus/breathing issues and I will be able to get my life back.

Tonight will be the first Friday that I will not be taking azithromycin and ethambutol since March.

I'm with you these holidays, Sue. Thank you!

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@rits I also want to point out that I nebulize tobramycin for 28 days every other month. It always starts out as an unpleasant experience. For the first two weeks, it causes me to cough my head off and lots of stuff comes up. It makes my lungs feel wet and uncomfortable, it changed my clear sputem green (probably from bringing things up from deeper down) Yesterday was the first day that the sputem came up clear. I will feel great by the end of this treatment. My point is; treatments may not be fun but are neccessary. Of course, you know your body better than anybody, and it may be better for you to quit your meds. I quit ALL of mine for two months last year. I told my dr about it and he laughed and said "Everybody takes a vacation from their meds at some point, and that is ok, just not as long as two months." He said " You do not want to take one step forward, and two steps back." Two months off put me at risk of undoing all of my previous treatment. Let me know if you do feel better off of your meds. Lots of people with chronic illness get weary of taking all of their meds. It is understandable.

Liked by Brenda R.

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@windwalker

@rits I also want to point out that I nebulize tobramycin for 28 days every other month. It always starts out as an unpleasant experience. For the first two weeks, it causes me to cough my head off and lots of stuff comes up. It makes my lungs feel wet and uncomfortable, it changed my clear sputem green (probably from bringing things up from deeper down) Yesterday was the first day that the sputem came up clear. I will feel great by the end of this treatment. My point is; treatments may not be fun but are neccessary. Of course, you know your body better than anybody, and it may be better for you to quit your meds. I quit ALL of mine for two months last year. I told my dr about it and he laughed and said "Everybody takes a vacation from their meds at some point, and that is ok, just not as long as two months." He said " You do not want to take one step forward, and two steps back." Two months off put me at risk of undoing all of my previous treatment. Let me know if you do feel better off of your meds. Lots of people with chronic illness get weary of taking all of their meds. It is understandable.

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Thanks for your response. I am positive that my doctor, who put me on these drugs, would be ok with me stopping now. She had me stop Arikayce for a month last July when I had a bad reaction after only 5 treatments and had me start again but only 3x per week. During our last conversation, she told me to stay on it as long as I can. I've stopped and will see what happens with respect to mucus and shortness of breath. She also told me that we might stop the oral antibiotics before June.

As for those antibiotics, they worked wonderfully well for me giving me negative samples in only 2 months. Now, I need to find out if they are what is causing the extreme digestive issues I have been suffering. I saw my oncologist this week and she could find nothing in her exam or review of my recent ct scan that would account for the extreme problems I am having which have had an enormous effect on my qol.

I like the vacation terminology. Obviously, if nothing improves while I am off the drugs, I'll start them again. I will discuss all this at length with my pulmonologist at my appointment next month. I'm glad your program is working for you.

I should add that I was not symptomatic for the disease but it showed up and was spreading on ct scans so sputum sampling was done. I was doing much better with MAC than with antibiotics.

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@rits

Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm such a whooos that I wanted a doctor to tell me to stop. But my wonderful bronchiectasis/ntm specialist pulmonologist left although she had assured me that she would still be at U if Chicago for my January appointment. I have made an appointment with my original pulmonologist who does have a specialty in bronchiectasis but referred me to the ntm one when my sputum turned up positive for MAC. She had not put me on the antibiotics or Arikayce.

I woke up this morning coughing up gobs of mucus which has become much, much worse since I started Arikayce last August. Then straight to the bathroom and pain. I finally started thinking rationally and your situation really helped. Thank you so much for sharing!

On Dec 3, I saw a report in mychart about my Oct sputum sample. I had seen good reports from samples since the summer but this one said: culture: no growth for 45 days. Final report. (I think that means they are finished looking at it because there is nothing there!)

What is the worse thing that can happen if I stop? The organisms will come back sooner then if I complete the protocol. I can deal with that if and when it happens.What is the best thing that can happen? The antibiotics are causing my worsening bowel issues and the Arikayce is causing my worsening mucus/breathing issues and I will be able to get my life back.

Tonight will be the first Friday that I will not be taking azithromycin and ethambutol since March.

I'm with you these holidays, Sue. Thank you!

Jump to this post

@rits I'm with Terri on this – talk to your docs first – you don't want the infection to come raging back. My ID doc was actually the one who suggested I stop, but 3 months and 6 months ago he was adamant that I continue at least to the 18 month mark. I was on the meds for 18 months – 6 months it was daily.
His philosophy is that since all my other signs are normal, I've been symptom free since August, and I was getting worse gut & fatigue issues, it's time to stop. He says that since MAC is everywhere, a percentage of the population can always test positive for MAC without really being ill, I may be one of them. (Especially since 2 of my siblings always test positive for the related disease of TB even though they don't have an active infection…)
Now he and the pulmonologist will be monitoring me – they are holding Terri's type of treatment "in reserve" – only to be used if I have the MAC flare up and become symptomatic again and then probably after another course of the Big 3.
Good luck, whatever you decide to do.

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@windwalker

@rits I also want to point out that I nebulize tobramycin for 28 days every other month. It always starts out as an unpleasant experience. For the first two weeks, it causes me to cough my head off and lots of stuff comes up. It makes my lungs feel wet and uncomfortable, it changed my clear sputem green (probably from bringing things up from deeper down) Yesterday was the first day that the sputem came up clear. I will feel great by the end of this treatment. My point is; treatments may not be fun but are neccessary. Of course, you know your body better than anybody, and it may be better for you to quit your meds. I quit ALL of mine for two months last year. I told my dr about it and he laughed and said "Everybody takes a vacation from their meds at some point, and that is ok, just not as long as two months." He said " You do not want to take one step forward, and two steps back." Two months off put me at risk of undoing all of my previous treatment. Let me know if you do feel better off of your meds. Lots of people with chronic illness get weary of taking all of their meds. It is understandable.

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@windwalker That last sentence Terri is incredibly and unfortunately accurate! I think that’s why this forum is so good because we lift each other up when necessary and provide immeasurable support and invaluable information to one another always!

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@windwalker and @sueinmn

Thank you so much for your responses and advice when I said I was going to stop treatment. I know it would have been better to discuss stopping with my ntm doctor before changing anything but she was leaving the University of Chicago for Tyler, Tx and was no longer seeing patients here and will start in Tx on Feb 1 and I needed to do something. At the end of this month, I have an appointment with the bronchiectasis specialist who referred me for ntm treatment. When MAC was found in my sputum, the plan was that I would return to her for my pulmonology needs (copd and bronchiectasis) once the ntm was successfully treated. I have been negative for MAC and also for Pseudomonas and klebsiella since last summer. I do have some fungi which appear now and then in my sputum but were not found during a bronchoscopy. My ntm expert told me I could stop the oral meds in June or maybe sooner and to stay on Arikayce as long as I can.

I have been having worsening digestive issues and mucus/breathing issues since November. Both seriously diminish my quality of life.

I stopped the oral meds and Arikayce around Christmas for a week. Because I take everything 3x per week, that means I missed two treatments. There was no improvement in my digestive issues. I have had a ab/pelvic ct scan and a pancreatic/liver/ducts, mri over the last few weeks for issues unrelated to my digestive problems and I am seeing my gastroenterologist in a few weeks. I don't believe the antibiotics are related to my problems and intend to continue them as long as my doctors say I should.

When I resumed the Arikayce I immediately noticed a difference. I had had an exacerbation when I first started it in July and it took a month to recover. My doctor told me to try 3x a week and that worked although I had increasing mucus and shortness of breath. In December, I realized that I was not doing activities that I had done before restarting Arikayce in August. Starting in November, I had a dogwalker for all 3 walks daily, which I had never needed before. I told myself that it was because of the winter weather but our temperature was in the 50's. I also was not working out. I haven't been to the building fitness center since September although I used to be there at least 3x per week. I purchased an exercise band in Nov which I've used twice. And, I have to force myself to go to my health club and I used to love going there. I'm at home most of the time!

I stopped Arikayce right after Christmas. When I had started Arikayce in August,I was unable to do Arikayce and saline and my doctor told me that the Arikayce was more important. I was taking it for pseudomonas and klebsiella then. I was negative for MAC and negative for the other two by September. Without Arikayce, I am able to do 3% saline 2x daily along with a smartvest and aerobika. I am walking the dog again but still have not been to the fc but go to my health club. The mucus and breathing are much, much better.

Thanks for listening and your advice. I will discuss all this with my doctor at the end of the month.

Rita (apologies for the long post)

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@rits

@windwalker and @sueinmn

Thank you so much for your responses and advice when I said I was going to stop treatment. I know it would have been better to discuss stopping with my ntm doctor before changing anything but she was leaving the University of Chicago for Tyler, Tx and was no longer seeing patients here and will start in Tx on Feb 1 and I needed to do something. At the end of this month, I have an appointment with the bronchiectasis specialist who referred me for ntm treatment. When MAC was found in my sputum, the plan was that I would return to her for my pulmonology needs (copd and bronchiectasis) once the ntm was successfully treated. I have been negative for MAC and also for Pseudomonas and klebsiella since last summer. I do have some fungi which appear now and then in my sputum but were not found during a bronchoscopy. My ntm expert told me I could stop the oral meds in June or maybe sooner and to stay on Arikayce as long as I can.

I have been having worsening digestive issues and mucus/breathing issues since November. Both seriously diminish my quality of life.

I stopped the oral meds and Arikayce around Christmas for a week. Because I take everything 3x per week, that means I missed two treatments. There was no improvement in my digestive issues. I have had a ab/pelvic ct scan and a pancreatic/liver/ducts, mri over the last few weeks for issues unrelated to my digestive problems and I am seeing my gastroenterologist in a few weeks. I don't believe the antibiotics are related to my problems and intend to continue them as long as my doctors say I should.

When I resumed the Arikayce I immediately noticed a difference. I had had an exacerbation when I first started it in July and it took a month to recover. My doctor told me to try 3x a week and that worked although I had increasing mucus and shortness of breath. In December, I realized that I was not doing activities that I had done before restarting Arikayce in August. Starting in November, I had a dogwalker for all 3 walks daily, which I had never needed before. I told myself that it was because of the winter weather but our temperature was in the 50's. I also was not working out. I haven't been to the building fitness center since September although I used to be there at least 3x per week. I purchased an exercise band in Nov which I've used twice. And, I have to force myself to go to my health club and I used to love going there. I'm at home most of the time!

I stopped Arikayce right after Christmas. When I had started Arikayce in August,I was unable to do Arikayce and saline and my doctor told me that the Arikayce was more important. I was taking it for pseudomonas and klebsiella then. I was negative for MAC and negative for the other two by September. Without Arikayce, I am able to do 3% saline 2x daily along with a smartvest and aerobika. I am walking the dog again but still have not been to the fc but go to my health club. The mucus and breathing are much, much better.

Thanks for listening and your advice. I will discuss all this with my doctor at the end of the month.

Rita (apologies for the long post)

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@rits I'll start by saying I'm glad you're going to talk to the doc before quitting the meds even though you feel like they're part of the isse.
Also, I saw my primary more than a week after stopping the mads and told her I was still having issues, especially digestive. She told me it will take 2-4 months or longer to recover from the long course of harsh antibiotics. She encouraged me to continue probiotics, added a course of a proton pump inhibitor for the stomach pain, and counseled me to be patient (not something I'm good at). I had a crazy week, including a 10 hour travel day yesterday, and today I was lucky to manage a short walk, a little visiting, and going to dinner – I didn't even make it to the grocery store. So I am getting better, but slowly.
Hang in there and let us know what you learn from your doc. Sue

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@sueinmn

@rits Mostly gut issues – stomach pain, frequent loose stools or actual diarrhea, nausea. Also fatigue & zero energy. It is worse if I fail to take probiotics and eat yogurt for a few days. It also got worse this summer when I had to start taking the meds daily. Both the ID doc and lung doc confirmed this week that the longer I am on the meds, the worse the symptoms are likely to be. It was a big part of the reason for stopping them now even though I have never converted to negative sputum cultures.
Do you use a probiotic and/or live-culture yogurt to help replenish the gut bacteria? Have you talked to your doctor(s) about possibility of stopping sooner than the 12-month mark?

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Hi Sue. I hope your gut is doing better. This is going to be long but I hope it helps others. I saw my gastroenterologist last week about my worsening digestive issues. We have a long relationship going backmore than 20 years when I first started seeing him for problems following radiation for my first cancer. Btw that radiation caused colon cancer which he discovered during a colonoscopy.

He said that the antibiotics absolutely could be causing my digestive problems even though I did ok on them for months. Probiotics as well as yogurt in most cases are not helpful. There are many different strains of bacteria in the digestive system, and each of us has a different mixture of good and bad. It's not possible to tell at a given moment which bacteria is causing the balance of any individual to be off and figure out which good bacteria to add. Probiotics, which usually consist of several different kinds of bacteria, in some people at some moment, may lead to a better balance but it is hit or miss. In my case, the 3 different kinds of probiotics I tried, all of which had been recommended to patients at NJH or by id doctors elsewhere, made my problems worse. He did, however, recommend trying Align which has only one strain of a beneficial bacteria.

The problematic antibiotic is Azithromycin which speeds up digestion causing diarrhea and also changes the bacterial balance. He said that I won't be able to tell if it is the antibiotics causing the worsening issues until I stop them. He also said that I was NOT to stop early because the digestive problem is temporary and not harmful to the body while the lung infection is much more serious and can cause permanent damage.

He did give me a description for Xifaxan, an antibiotic that kills e coli, which costs a whopping $1900 for 42 pills (3 a day for two weeks) but my copay is a measly $50. I took it about 3 years ago and couldn't finish the prescription. Talk about diarrhea! Not only couldn''t I leave the house, I couldn't leave the bathroom! He told me that I didn't need to complete the whole course but getting rid of even some if the e coli we all have in our colon should help. It did help a couple of years ago. I'm not going to use it until after some appointments I have coming up including the pulmonologist next week.

Have your digestive problems resolved now that you have bern off antibiotics for about a month? Because you apparently still have some MAC 🙁 have other symptoms improved? I'm curious as to whether the symptoms such as fatigue are caused by the disease or the antibiotics. Hope you are doing great!

Rita

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