MAC antibiotics and side effects

Posted by reneeg @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we’re told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

@katemn

Hello Renee .. so glad you found our Forum! It sounds like the two of you are really going through a tough time! I was diagnosed in 2007 and unfortunately due to lack of knowledge and information did not go on the antibiotic treatment until October 2011. I was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Your husband is very lucky to have you by his side and be his advocate! I have been this advocate for my husband for many years as he has struggled with various health issues. Sending you both a Big Hug in this tough time. Katherine

You can find the link at:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=13

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@pamelasc1 Pamela, so glad you contacted me! The below link will take you to our Forum .. then you can read the past pages .. and/or post any questions you might have. Hope things go well for you in April .. keep us posted! Go to the below link .. PLUS I am going to repeat this post in that same Forum .. then you can just hit “Reply” to get started with any question you might have .. that should work just fine! Welcome Back! Hugs! Katherine

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=20

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Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Welcome to the MAC forum, @21042.
You’ll notice that I moved your message to the discussion where members are already talking about “MAC antibiotics and side effects”

I also encourage you to read the stories in the main discussion here:
– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M

There you’ll meet @katemn @Paula_MAC2007 @tdrell @heathert @kwilbur @lindam272 @cila @jewel8888 @windwalker @128128terry11t and many others who have shared their experiences with treatment.

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Hello 21042 – this is Pamela. I began the 3 pill regimen in November of 2015 and have to go until April… I did feel very lousy the first month but was told to hang in there, that it gets better each week- and it did! I will tell you how I take my pills, as timing can help, as can taking other supplements. I take my pills also Mon, Wed, Friday. I take them between 9 and 10 PM, just before going to bed. I take with a lot of water. I try to put about 2 hours between eating dinner and taking the pills. Every day I take a pro-biotic to help the gut – the antibiotics wreck havoc with the gut. This can help with nausea – I take my probiotic with breakfast or lunch – do not take it late in the day, especially on a day you have to take the pills. I use Ultra Jarro-Dophilus – 50 billion per capsule – will find in the frig at any health food store – I open up the capsule and drop in a bit of applesauce, stir it up and eat. I also take Vit D3, 2000 IU and B6, 50 mg. After my stomach settled down in about a month, the side affects I have been left with are fatigue and weight loss, sometimes night sweats, and insomnia. Remember to take the pills at the same time of the day, so if you go on a schedule like mine, just stick to it by taking the pills two hours or so after eating a meal. This way I found I slept through the nausea for the most part. And as has been suggested, read through all the earlier posts – they are VERY helpful! Good luck and just have faith your nausea will get better. Pamela

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Thank you so much, Pamela. I have been taking one type in the morning, one about noon and one at night. No wonder im sick all the time. My Dr. told me to take the one that affects me the most, at night. I really cant tell which one that is. Ive wondered what kind of probiotics to take and you gave me good info there. Ive not been given any info on probiotics. You have been most helpful and given me hope to go on. Ive been on antibiotcs for 20 years for bronchiectasis and done very well, but the last year i began to feel bad and slow down. Thats when i was told about the MAC. Said ive probaly had it for two or three years. I knew i was not my usual busy self. I had no energy and could barely go to the gym once or twice a week, sometimes not at all. Ive always been very active and exercised regularly at the gym. Im 75 years old on Friday and i just need to get back on track. Im so encouraged. Im going to push on and get through this. Youve really lifted my spirits. Hope we can chat occasionally. God bless you. Kathi

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Kathi ( glad to know your name!) – I too have bronchiectasis and am 67 and love to be on my feet all day – just rest when you can and sleep even if in the middle of the day. I am glad I could be of some help, Pamela

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Hi 21042, I’m on my 6 month taking meds now. I was so terrified when I first started and it got better. Keep your chin up and I will include you in my prayer. Make sure you drink plenty of water. The probiotic help my stomach crump and the nausea. Hang in there and you will make it through. Cila

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Thank you Cila for the kind words. I especially would covet your prayers. At this point i rely on prayers more than anything. I will continue and hope the side effects become less. Pray for me and i’ll pray for you. Kathi (21042)

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Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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Congratulations, laneyk. Im just starting my journey, two weeks now. Really tough! Being able to have support will make all the difference. Stay healthy and happy. Kathi (21042)

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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I saw your post the other day. The treatment does get better with time. Rough at first. I was on meds everyday. Just do what your body tells you to do. If you need to lie down, do it. I was so acutely sick before diagnosis it took a little while after treatment began before I could return to normal life. I’m so glad I stuck it out.

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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Yay!!! That is fantastic news! So happy for you. That is what we like to
hear. That is what keeps us going. Thank you for sharing. Prayers out for others
still fighting the battle. Hugs -Terri M.
 

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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Hang in there Kathi, we are here for you. Sending prayers and Hugs! Terri
M.
 

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@laneyk

Hello everyone. I have a praise report. I am 6 months off the meds and got sputum results today. No bacteria found. I am feeling so much better than I was 2 years ago. There is light at the end of the tunnel and life after MAC. I wish everyone could have the results I have had with this disease. I have not had the nerve to ask about reoccurance, but I think I will in March when I see the doctor again.

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I’m so happy for you, laneyk and congratulation! I’m looking forward to the good news too. I prayed that by the my 1yr of taking this meds. it will clear my lungs. Take care! Cila

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@21042

Ive been diagnosd with mac and on the three antibiotics for a little over a week. Four days-fri,mon, wed., and fri. I have been the sickest of my life. I cant function this way. The nausea med makes me even worse. Can anyone suggest something to help me? Does it get better? Id rather not treat it than be like this.

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I talked to my pulmonologist on Tues. and i brought up probiotics to her. She said these three antibiotics do not attack the good bacteria in the gut, that they only work for nothing but mac. Did your doctor recommend them? Im so confused. She said they would do nothing. I have been so sick today. An hour after i took my meds last night i vomited it all up and have been sick since. The first day i took all the meds at 9:00 pm. and went to bed. I did fine. I ate at 6:00 pm. Ive never had anything make me so ill. Im so nauseated i cant eat, but i know i cant continue not eating. Also my dr. gave me Ondansetron 4mg. for nausea. Doesnt help a bit.

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