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MAC antibiotics and side effects
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!!
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Breathe a sigh of relief. The treatment for pseudomonas is much shorter than MAC and uses a different family of antibiotics. I beat it back in 2 months with 3 courses of oral meds and one month of inhaled Tobramycin. As far as I know it has not returned since 2018.
That is a bug you want out as it causes nasty pneumonia if it becomes chronic and deep seated.
Yes if they send your sputum for a culture it takes 6-8 weeks to find out if there is NTM. The report says they didn't see tuberculosis (Mycobacteria tuberculosis).
I absolutely agree that if you are not comfortable with your doc's expertise you should be seen in the Cedars Sinai system. I was lucky that my ID doc had a working relationship with NJH, so I felt well cared for.
But if the labs show pseudomonas , maybe consider starting treatment while waiting for a new appointment?
Sue
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2 ReactionsSue, your comments are always so thoughtful and helpful. We appreciate your mentoring immensely.
I was wondering, you mention that your condition/symptoms have been stable the last few years, do you have regular sputum cultures? How often? And do the cultures still show NTM/MAC? Thank you if you want to share.
I was on the big 3 for 6 months and then I failed 2 view field eye tests and my eye Dr took me off ethambutal immediately. After being off the ethambutol for 3 months I can now pass the view eye test. I am still on arthromycin and rifampin and it will be a year next month. It is extremely important to see an eye specialist every 3 to 4 months! Also have hearing tests often. You are right about getting a base hearing test before taking the big 3 as it will show any change from taking the meds. Also have an eye exam before the meds for the same reason.
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3 Reactionsthank you, dulwich, for your response. Was the discoloration showing as spots or just your skin color changed all over? One more question, when you were on clofazimine, how often did you have blood work done for liver function and kidney function?
Hi Sue, for the first year I had sputum cultures every 6 months, and they were positive. At that point the ID doc and pulmonologist suggested we rely on an annual CT and symptoms, since there was no plan to treat.
I recently asked if we should do another culture "just to be sure" nothing else is there - I am waiting for a reply.
Sue
I will see Cedars dr this Weds, 7/12 (yay!). Labs show I am resistant to Tobramycin and I had a very bad reaction to Cipro when taken for my GI problem. So, I will see what my new Cedars dr has to say. I am hopeful a good plan will follow. Thanks so very much for your expertise and support, Sue.
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2 Reactionshi Sue, I’m finally seeing an ID doc end of this month. I have slight bronchiectasis and MAC. I have endless white/clear sputum. it gurgles in my chest and easily comes past my esophagus all the time. I barely need to start my autogenic drainage, it’s just always ready to be expelled. I do saline nebulizing after a quick albuterol dose every day just in the hopes that the saline is killing some bacteria. This has been my story since November diagnosis. I am 65 and very athletic, my oxygen saturation is excellent. I have two lines of thought. I wonder if you can help me work through. 1) I am leaning towards diving into the big three protocol with fingers crossed, and a hopeful attitude that I will be a lucky one and sail through without terrible side effects. this decision is being prompted by my understanding that chronic inflammation is a terrible enemy in this fight. do you think I am balancing my considerations intelligently? And, 2) when I do my airway clearance, at the end of the saline dose, I’ll extend my expelling time with autogenic drainage and push this whole process close to an hour. This easily produces a half a cup! Then, I just get bored, distracted, fed up and walk away. I’m good for the day, as far as not needing to cough, which has been a godsend. But I am constantly producing all day long, and either subtly or not so subtly expelling it. I’m starting to think I should have a marathon session and just keep going with the autogenic drainage… Is that crazy? To sit for hours and just expel expel expel? Thanks as always for your insight!
The endless sputum production seems unusual so I wonder what your pulmonologist had to say about that? The fact that it is not colored is good but still odd that you have so much. I have long term Bronchiectasis (not mild) with chronic Pseudomonas. I do produce approx. 3 ounces of sputum a day. but it is half colored and half very white and foamy. I have asked my pulmo about the white foamy since that was a new development starting around a year ago but he does not think it means much. I do. Would be curious to know what you find out about that and the volume of mucus. Going for longer than you mentioned with clearance is probably not a good idea. Especially since your oxygen saturation is so good.
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1 ReactionHi Renee, you may wish to join us on NTMir Australia's private facebook group. There are others there with similar issues and you may find support through them as well. Also the Lung Foundation Australia has a support group for those with NTM, most of us are members on both platforms. I'm a Kiwi.
I too see a doctor at Emory, who is your doctor?