1. < MAC & Bronchiectasis

Recently diagnosed with MAC and nervous about meds

Posted by gee12 @gee12, Mar 8 10:05am

I’m recently diagnosed with MAC. I also have COPD, AFib and ongoing intestinal issues after surgery for a ruptured bowel. The side effects of the big 3 sound overwhelming to me. Most of them are problems that I already deal with on a daily basis. I’m 78 years old and have pretty much decided not to take the prescribed drugs, Ethambutol, Rifampin and Azithromyzin. Has anyone else made this decision? Extreme fatigue and coughing are my biggest problems right now. Any suggestions on alternative medications or pulmonary therapy? I’m so happy to have found this group for some insight on what I will be dealing with.

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hollyhoho123 | @hollyhoho123 | Mar 15 11:24pm

I was diagnosed with bronchiectasis 2 years ago...did a new ct scan today..shoeing none ...wth..just like I did a motility test years ago showed 11 % now it's normal my motility...I suffer from aspiration pneumonia...I did a barium swallow test..didn't really show aspiration...but did show a little bit if swallow difficulty...now I am on stage 7 soft chew diet...I was also diagnosed with a hiatel hernia ...but I had gastric sleeve done in 2012...and only procedure they offer is the bypass which my insurance don't appeovre..pulmonologist thinks that's what causes the aspiration...this is nuts ..just venting

REPLY
franie | @franie | Mar 17 10:35am
In reply to @lauraadam2425 "Hi I am 77 yrs old and been on the big 3 for 1 1/2 yrs..." + (show)
@lauraadam2425

Hi I am 77 yrs old and been on the big 3 for 1 1/2 yrs although last April I was taken off ethambutol for eye problems. I was very reluctant to go on the meds because of all the side effects and being older but I feel very fortunate that my side effects have been minor compared to others. I did have nausea and diarrea but for the most part tollerable. I am now on Arikayce to replace the ethambutol and have had the most side effects with it but hope to get off soon. Everyone is different good luck.

Jump to this post

I appreciate everyone’s comments . In 2011 I started treatment for MAC infection . I had symptoms and difficulty breathing for three years and seeked help , but, none of the Dr’s every even tested for it as my labs never revealed infection yet I sweat all over through nights and was very tired . Finally my internal med Dr ordered a bronchoscopy but it took so long to get results back . Then they tested my gamma globulin and it was in the basement . I went to Mayo for testing as well and it took five months before the C&S came back. I started with monthly infusions of IVGG but went on IV Amicacin IV Moxacillin for 60 days followed by Floxin once a day Clarithromycin twice a day , Ethambutol once a day by for eighteen months . I used saline nebs as needed and needed to stop the Ethambutol after one year due to vision problems . It has been about ten years since completed med regime . I was blessed to be able to tolerate the oral Clarithtimycin . I have lung nodules in upper and middle and upper lower bed to the rt lung. I’m doing great now . I’m get IVGG every six weeks yet. I had bilateral mastectomy with implants which Drs thought caused my immune system to react and I had them removed at Mayo. I no longer need to do nebs and I was so thankful to finally get the antibiotics and consider myself lucky that there was treatment available and highly would have not survived without the meds.,It would have continued to form more nodules and destruction of my lungs without . Upset it took Drs so long to believe
Me and do a bronchoscopy . I would give the antibiotics and if you have untoward side effects then re evaluate treatment but I do know that I would have died without treatment. Good luck

REPLY
1 reply
Rick | @rstel7272 | Mar 18 9:27am
In reply to @franie "I appreciate everyone’s comments . In 2011 I started treatment for MAC infection . I had..." + (show)
@franie

I appreciate everyone’s comments . In 2011 I started treatment for MAC infection . I had symptoms and difficulty breathing for three years and seeked help , but, none of the Dr’s every even tested for it as my labs never revealed infection yet I sweat all over through nights and was very tired . Finally my internal med Dr ordered a bronchoscopy but it took so long to get results back . Then they tested my gamma globulin and it was in the basement . I went to Mayo for testing as well and it took five months before the C&S came back. I started with monthly infusions of IVGG but went on IV Amicacin IV Moxacillin for 60 days followed by Floxin once a day Clarithromycin twice a day , Ethambutol once a day by for eighteen months . I used saline nebs as needed and needed to stop the Ethambutol after one year due to vision problems . It has been about ten years since completed med regime . I was blessed to be able to tolerate the oral Clarithtimycin . I have lung nodules in upper and middle and upper lower bed to the rt lung. I’m doing great now . I’m get IVGG every six weeks yet. I had bilateral mastectomy with implants which Drs thought caused my immune system to react and I had them removed at Mayo. I no longer need to do nebs and I was so thankful to finally get the antibiotics and consider myself lucky that there was treatment available and highly would have not survived without the meds.,It would have continued to form more nodules and destruction of my lungs without . Upset it took Drs so long to believe
Me and do a bronchoscopy . I would give the antibiotics and if you have untoward side effects then re evaluate treatment but I do know that I would have died without treatment. Good luck

Jump to this post

Frankie, my experience is very similar to yours. I totally agree with the antibiotics and bronchoscopy ,and yes, they saved my life also.

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