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Thu, Jan 3 3:37pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Was in to see my doctor yesterday, glad to say my culture shows no growth after 8 weeks. Have been on the Big 3, but “I” stopped that three weeks ago. They were setting up the Akylas inhaler which I turned down before the culture came back. I feel much better and have prayed many times and give God the glory. Good luck to all.

Wed, Jan 2 1:31pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have stopped all.treatment
I feel the side effects are too bad
I tried the BIG 3 and the doctor wanted me to.start me on the Akyrace inhaler
Too hard on my body
My hearing is constant in my right ear from the BIG 3, next would have been my eye sigh

I have said no and feel fine for now
I wish you good luck in your decision

Dec 24, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

I also felt like you. Some days I only wanted to crawl in the bed and stay there head covered. I have decided to stop all MAC MECICATION due to feeling as I had no life. I do not think I will go back on any of the meds due to feeling worse on them as without. My diease doctor wants to start me on akaryace as well as the Big 3, my pulmonary doctor seems to feel like it is too much for my body. I have been off two weeks and feel much better. My ringing ears are less since I have stopped. Many wishes for all of you, we have to listen to our body and do what we feel is best.

Dec 14, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

Thought I should let you know how my Doctor visit went. I saw my pulmonary Doctor, not the infectious disease doctor. I told him how I was concerned about the Arikayce side effects. He has been treated with the injections for tuberculosis years age. So that told me he knew how this medication made you feel. He agreed with me about my concerns. He called my Infectious d. Doctor to see what his diagnosis was for me. He said he was waiting to see if the sputum shows up anything, which it has not so far. It has two more weeks to show the results. So, as of now I am off every medication for two weeks, maybe more depending on how I do as well as the sputum test. I ask how I would be if I decided not to take future treatment. He said I may cough a lot if MAC. decides to get worse. I will know more once the test come back. Hope you are feeling better.

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

I think my tired body comes from the Big 3. I am so mixed up about going on the Arikayce. My ears already ring all the time and my site is beginning to show signs. My doctor is trying to get me to start the Akrikayce as well as the druggist at his office. I talked with my pulmonary doctor and he thinks I should get a lung X-ray and sputum test before I decide. These side effects are really scarey . We have ALOT of snow and so far the doctor office is closed, so I can’t get in to get the xrays etc. I have always been very active and this has been so hard on me as well as my husband. I have tried to not complain but my weak eyes tell on me along with my being so tired. Thanks for letting me know “someone “ that has started on the Arikayce. How long have you been on this. I know taking the big 3 and the inhaler has got to be really hard and that is what concerns me. Keep me posted and I will let you know what I decide.

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

How do you feel.while on the Arikares ? Has it helped ?

Dec 11, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

I have not tried it yet. I got a second opinion and was told to get more x rays of my lungs and sputam test
I do not like the idea of taking something that could cause blindness and loose of hearing
I will know more after the test. I do not have a bad cough or breathing bad unless I do a lot of heavy walking etc.
I will post as soon as I know what I am doing.
The big 3 seems to be what are making me feel so bad
I sometimes wonder how I would be if I stop all treatment.

Dec 8, 2018 · Daily dosage of Rifampin Ethanbutol and Azithromycin in MAC & Bronchiectasis

I don't understand why I am being kept on the Big 3 as well as he inhaler. my symptoms are not as bad as a lot of others on this site. I have only a slight cough AT TIMES. No coughing up anything, sometimes I feel I am being over treated .I do have aching legs -ringing ears .my eyes are not as good as they were before I started the 3 meds. I know it is the meds that are causing this.