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!!

@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 started taking probiotics when I was first diagnosed with MAC. I mentioned it to my doctor. He told me it was unnessary to take them as these antibiotics did not affect the bacteria in the bowel. So, I did not and have had no problems with that. I was somewhat nauseated at first and had no appetite. It does get better. Maybe if you take them at different times it would help. I did that for a while and finally started taking them all the first thing in the morning. I I was, however, given Rifabutin instead of Rifampin. I have
not seen where anyone else took Rifabutin. I am 6 mos.off the treatment and Sputum culture is still negative. I’m not sure why my doctor prescribed Rifabutin instead of Rifampin, but I have done well after the first few months. Try to find what works for you and rest as needed until you can tolerate the medicine. We are all different.

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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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@laneyk, Elaine, I am curious .. during your period on antibiotics did you ever get vaginal yeast infections .. candida .. or oral thrush? Just curious because many of us on antibiotics have had those issues. Hugs to you on your WONDERFUL success with your being 6 mos off treatment .. way to go! Hugs! Katherine

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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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Katherine, NO, I did not have a problem with yeast infections or thrush. The MAC antibiotics do not affect other bacteria. Only the mycobacterium are killed by them.

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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 – I am so sorry to hear how sick you have been feeling.  I have never heard what your doctor told you about probiotics and the meds we take.  All I know is that I have been on the probiotic since starting the meds and I have not had the nausea.. I would try to get some other opinions.  At one point when I was first starting the meds, I went to a doctor who was trained in both western and eastern medicine and does acupuncture .. someone like that might be able to help you with the nausea.  In the beginning when I had little appetite and I could see I was losing weight, I drank Ensure every day, knowing that would help – it is not very appealing but it does have the nutrients. Some staff at certain health food stores can be very helpful when it comes to issues of nausea so you might want to find a reputable place and see if there might be something there you can find to help with the nausea – talking to them also about the use of probiotics could be helpful too. I really hope you can eventually get some relief.  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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@pamelasc1, Pamela thanks for the idea of the acupuncture .. that is a GREAT idea .. I had not thought of that! I have used acupuncture many times for various things .. like healing from carpel tunnel .. back pain .. and I know it is not a miracle cure but it REALLY helps. Be SURE to check out the practitioner .. I was lucky enough to find one that had taught in China and then had been brought to the USA to teach acupuncture here. He is excellent .. so just check out the bios .. just as you would an M.D. here. Pamela, you were REALLY lucky to find a doctor trained in both eastern and western medicine .. I SO believe in both! A good article on protein shakes is: http://www.health.harvard.edu/staying-healthy/supplemental-nutrition-drinks-help-or-hype. Personally I did the “Bolthouse Farms Protein Plus Chocolate” .. it had 30grams of protein .. in the refrigerated section of the grocery store .. at $3.69 not cheap but with the most protein and least sugar I felt it was worth it for my health. Pamela, Thanks for jumping in .. you always have such good advice! Hugs to all! Katherine

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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, Pamela. I will still try the probiotics. I have read other posts saying the same thing about probiotics as my doctor on this forum, even one by a doctor at Mayo. Im ready to try anything. Im going to push on if i can. Im on my meds tonight and i keep hoping it will be ok. Ive never been a quitter, but this has brought me close. I was able to eat a bit more today and i even took a short walk in the woods. Its 75 degrees here today. I did get ” BOOST” supplement, but it was too sweet. I”ll try Ensure. Thanks for encouragement.

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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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Elaine, thank you for answering my question .. really interesting! Hugs! Katherine

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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. I too used accupuncture in the past with great results. Two of the best
I have found is one in Manhatten and one in Washington state. I was visiting
both areas and both relieved my symptoms in 20 minutes time so that I could
enjoy the rest of my trip. I would go to one here, where I live, except I have
not found a good one yet.
 

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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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@21042, Kathi, all I will say to you is that two of the highest regarded sources, Dr. Timothy Aksamit of Mayo Clinic recommended I take probiotics when I started antibiotic treatment .. plus this : @tdrell, Terri Dr Gwen Huitt ID MD specializing in NTM at National Jewish Health urges clients on the antibiotics to take probiotics…She earned a masters in Microbiology prior to attending Med school. And has worked with hundreds of NTM clients. As far as I am concerned .. these two sources are the Gold Standard not to be disputed in my opinion .. but each of us must make our own decisions for our own bodies as each of our bodies are different. Hugs to all! Katherine

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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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If nothing else, taking probiotics can’t hurt.
 

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@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Hi! I feel your pain! Anything on those 3 inch Advantix for close to a month now three times week. I have diarrhea, overwhelming fatigue, and now blistering and feeling in my hands. I believe diarrhoea has gotten much better, but it seems every time I look at myself a new symptom pops up !

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@fransav

Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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Hello Fran. I just posted today…..I am new to the group so I can’t help too much….I just started the same regiment My doc had me start the first drug last week by itself…..Today I added the ethambutol today…..Watching and waiting…..Don’t feel like I have any symptoms yet……I have a feeling it will come….
Hope you are feeling better by now…..I see this post was from April…..
I think I am doing this right……
xoxo

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@fransav

Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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I just started yesterday with daily Rifampin, Azithromycin and Ethambutol meds and started peeing orange immediately and now, day 2, a low grade but persistent headache. Will have to see how things develop.

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Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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@fransav

Taking the 3 antibiotics prescribed for MAC three times a week! I’m reduced to Jell-O on those three days, I’m so weak have diarrhea, and extremely fatigued. Anyone else have the symptoms.? I’ve been on these meds for about a month now. Thanks

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I’m so sorry to hear about the bad affects of the meds. My husband is also taking the three drugs, and he, too, has bad affects. He complains of diarrhea, additional night sweats, fatigue, and also chest pains. I’ve read other posts that say these will get better over time. I hope so.

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