1. < MAC & Bronchiectasis
Mentor

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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Dec 20, 2019
In reply to @rits "Oh my Sue! I'm going to do it! Quit it all and see what happens. I'm..." + (show)
@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'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.

REPLY
irene5 Irene Estes | @irene5 | Dec 20, 2019
In reply to @windwalker "@rits I also want to point out that I nebulize tobramycin for 28 days every other..." + (show)
@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!

REPLY
rits | @rits | Jan 5, 2020

@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)

REPLY
2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 5, 2020
In reply to @rits "@windwalker and @sueinmn Thank you so much for your responses and advice when I said I..." + (show)
@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)

Jump to this post

@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

REPLY
rits | @rits | Jan 25, 2020
In reply to @sueinmn "@rits Mostly gut issues - stomach pain, frequent loose stools or actual diarrhea, nausea. Also fatigue..." + (show)
@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

REPLY
3 replies
poodledoc | @poodledoc | Jan 25, 2020
In reply to @rits "Hi Sue. I hope your gut is doing better. This is going to be long but..." + (show)
@rits

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

Jump to this post

When I first started taking the Big 3 in Sept 2019 the Azithromycin was causing some major diarrhea. I started taking 2 Imodium 2mg tablets with each dose of my antibiotics and that completely resolved my diarrhea issue. I also take a "Florastor" probiotic daily. It is yeast based and not affected by antibiotics. I still will have occasional mild nausea and will take a Ginger supplement for that, seems to help.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 25, 2020
In reply to @rits "@windwalker and @sueinmn Thank you so much for your responses and advice when I said I..." + (show)
@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)

Jump to this post

@rits Hello Rita! After reading your post, I feel like you may need a little extra boost to keep you on your wellness mission. I am about to have you try a visual project that worked well for me. I want you to put pictures of healthy vibrant people that are exercising in some fashion and also one of a woman walking her dog, And one that has a smiling healthy image of a woman that most resembles you. A large printed word that says 'SMILE', and 'HUGS'. Tape these to your refrigerator where they will be daily reminders. Imagery plays a big part in what we believe for ourselves and help us to keep our goals on tract. Perhaps they may help you to get out the door to walk your dog and go to the gym. I have used this method of imagery many times for things and it has worked. As Oprah likes to say, "If you can NAME it, you can CLAIM it!" Those images will work on you on a subconscious level as well. I suggested the words Smile & Hugs because they have healing qualities. Smile more and know that the hugs are from us, but do try to get some physical ones too. Hugs!

REPLY
rits | @rits | Jan 25, 2020

Haha! Thanks Terri. I don't need a boost of encouragement and thank goodness I have Costco for toilet paper. Lol! My problem is that I cannot leave my house due to incessant diarrhea not because I don't want to go or any other reason
I can't count the number of times I've turned around while driving somewhere to hurry back home. At the public library, the librarian at the front desk buzzes the ladies's room door lock when she sees me rushing in. I have been in bathrooms in supermarkets, big box stores and spent 30 minutes in a Kohl's bathroom because every time I washed my hands, I was back in the stall. Funny! Not embarrassed! It is what it is and the colon cancer surgery saved my life.

What changed over the last few months is that I have gas (don't want to get too graphic!) that sometimes keeps me awake all night and pains so bad that I moan on the couch for hours.

I didn't want to go there - tmi- but here I am.

I am able to walk the dog all three walks no matter the weather since I stopped Arikayce. I hope I'm not told to start it again. And I have the ecoli killer med if I need it. My gastro believes the recent worsening is due to a combination of my short digestive anatomy and the antibiotics.

I hope the sputum sample I'm bringing in next week is negative and my doctors can start talking about an end date and whether, like you, I will need ongoing treatment. March will mark one year on the antibiotics and June will mark my first negative. I know others have been on them much longer. 🙁

REPLY
garry | @garry | Jan 25, 2020

I have had mac for 20 years. I am running out of drugs to use. Can I ask what anti biotics u are on?

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