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!!

@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

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Hi, I was diagnosed with MAC, COPD and Sarcoidosis six months ago – have been on Clarithromycin 500mg, Ethambutol and Rifadin now for almost 5 months. Insomnia is a problem, no appetite but otherwise okay. Very slight improvement on my last CT Chest Scan – continuing for the moment, although Spec. is talking about Steroids which I am not happy about. Good luck. Jo

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@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

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Hello Jo, if you were replying to Renee .. thank you SO much for jumping in and adding in your experience to help her on her journey!

If you are new:
Welcome! Glad you found our Forum! I would encourage you to read the pages of the past posts to find out some pretty good tips on how others have handled various side effects of our disease .. knowledge is power .. I think it really helps on this journey of ours!

I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now “stable”. As I have posted I really don’t know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn’t really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use ONE TwinLab Magnesium 400mg tab plus half an over the counter Unisom Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can’t say they would for you .. but do be aware they will result in looser stools!

The steroids .. my guess .. it is not for the MAC .. I have not heard anyone speaking of it being prescribed for our disease. The only time I took steroids was when I had terrible pneumonia in 2003 .. as a result I ended up with GERDS. Have NO idea if steroids had anything to do with it .. BUT you might discuss steroids potentially causing GERDS with your doctor. Because ALSO MAC and GERDS are commonly seen together. Also you might try googling steroids to see how best to cope with the side effects etc. That is what I always do .. BUT don’t get freaked out .. you NEVER get all the problems they talk about! Be sensible and just do your “due diligence” about seeking knowledge.

In terms of appetite .. try for 5 small meals per day .. or get some Ensure if nothing else .. you MUST get nutrition into your body! Remember .. you are given but one body in this lifetime .. you must take care of that body .. so IT can take care of you!

This is a tough time for you .. be kind to yourself. Figure out what “fills your cup”. What gives you serenity. Then seek that out for yourself .. because you CANNOT “pour from an empty cup” .. you cannot give to anyone else or yourself if you are trying to operate on empty. Just know there is a rainbow at the end of the end of this tunnel .. you WILL get through this .. you WILL come out at the end! I have been off antibiotics and “stable” since May 2014. You WILL get through this .. IF you take good care of yourself .. exercise .. eat well .. be kind to yourself .. and seek serenity. Jo, keep coming back to our Forum .. you will find really kind helpful people here! Sending you a Big Hug! Katherine

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@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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Hello Katherine – I have not been in touch with the Forum for awhile. I joined back in November or December of 2015, when I first began treatment for MAC. I have not missed a week of taking the pills and if things are good, I am supposed to be ending the treatment in April. I wanted to ask some questions to see if anyone has any experience with what I have been dealing with. I tried to find the main Forum with all the emails so I could read through them again, but when I click on the link you give here in this email, I only can get one email which is your first email dated 2011. Can you give me some help in finding the main Forum? Should I write my questions in the same “reply” box that I am using now. Thanks for your help, Pamela

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@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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