1. < MAC & Bronchiectasis

New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics....or not....since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

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sounder27 | @sounder27 | Apr 30, 2020
In reply to @laura34 "I appreciate the replies. Yes I have been on on the big 3 daily. Last CT..." + (show)
@laura34

I appreciate the replies. Yes I have been on on the big 3 daily. Last CT showed new nodules and the previous ones are again noted but getting larger. Concerned if maybe I am becoming immune to the antibiotics and that’s why they aren’t working. I mentioned the amikacin awhile ago to a previous pulmonologist who said stick with the triple 3 because the potential side effects from the inhaled amikacin were pretty bad. I will mention it to my new doctor to see what they think. It’s a terrible feeling when they are agitated. I felt as if my lungs would literally sizzle if water was poured over them. Doctor said the same about the steroid. Worried it would make you more vulnerable to infections. Nannette- Hoping for good news for you with your CT and sputum test.

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Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it every other day with literally no side effects. At the daily dose I began to loose my voice so my pulmonologist changed me to every other day. I am not on the big 3 because 2 of those drugs affect my heart rate adversely and my doc felt I was not able to tolerate them. I was scheduled for a ct in June but doc has said we will wait until August because of the corona virus. At last ct scan I have nodules and 3 cavitation lesions

REPLY
2 replies
laura34 | @laura34 | Apr 30, 2020
In reply to @sounder27 "Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it..." + (show)
@sounder27

Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it every other day with literally no side effects. At the daily dose I began to loose my voice so my pulmonologist changed me to every other day. I am not on the big 3 because 2 of those drugs affect my heart rate adversely and my doc felt I was not able to tolerate them. I was scheduled for a ct in June but doc has said we will wait until August because of the corona virus. At last ct scan I have nodules and 3 cavitation lesions

Jump to this post

Sounder27- good to hear you haven’t experienced any side effects. I will definitely mention it to my current doctor to see what they say especially since the current antibiotics I have been on for almost a year and a half now don’t seem to be helping much. I would love to hear how your next CT goes since being on the amikacin.

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1 reply
Brenda R. | @brigby | Apr 30, 2020
In reply to @windwalker "Ironic. My thumbs are giving me a lot of trouble right now. I think it may..." + (show)
@windwalker

Ironic. My thumbs are giving me a lot of trouble right now. I think it may be due to increased device use; trying to maintain outside connections to people and looking for information. It feels like carpiral tunnel of the thumbs.

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@windwalker888 @irene5 I too share your thumb pain! Just had another injection it doesn’t keep me awake at night. I severed a major tendon years ago, snow skiing, and had emergency repair surgery then. Now it’s arthritis, for which I have a genetic predisposition. (If it’s not one thing, it’s your mother.)

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1 reply
irene5 Irene Estes | @irene5 | Apr 30, 2020
In reply to @brigby "@windwalker888 @irene5 I too share your thumb pain! Just had another injection it doesn’t keep me..." + (show)
@brigby

@windwalker888 @irene5 I too share your thumb pain! Just had another injection it doesn’t keep me awake at night. I severed a major tendon years ago, snow skiing, and had emergency repair surgery then. Now it’s arthritis, for which I have a genetic predisposition. (If it’s not one thing, it’s your mother.)

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@brigby You are definitely funny! My mom always said I would have “old lady“ hands because I cleaned so much, and my hands were always washing dishes in really hot water. By golly she was right! I took her for a knuckle replacement before she died in 1995. That helped her a lot. She couldn’t even open her cabinets. My hands hurt all the time. I believe now my mom and aunt both had MAC. So yes, if it isn’t one thing, it’s your mother! That’s a good one! I needed a good laugh. Thank you. irene5

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sounder27 | @sounder27 | Apr 30, 2020
In reply to @laura34 "Sounder27- good to hear you haven’t experienced any side effects. I will definitely mention it to..." + (show)
@laura34

Sounder27- good to hear you haven’t experienced any side effects. I will definitely mention it to my current doctor to see what they say especially since the current antibiotics I have been on for almost a year and a half now don’t seem to be helping much. I would love to hear how your next CT goes since being on the amikacin.

Jump to this post

Laura34. I will definitely post my ct results. I am hoping for great improvement since my coughing has quieted down and I am not producing much mucus anymore.

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1 reply
irene5 Irene Estes | @irene5 | Apr 30, 2020
In reply to @sounder27 "Laura34. I will definitely post my ct results. I am hoping for great improvement since my..." + (show)
@sounder27

Laura34. I will definitely post my ct results. I am hoping for great improvement since my coughing has quieted down and I am not producing much mucus anymore.

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@sounder27 I am very encouraged by your comment about Arikayce. I was supposed to start on Arikayce right when Covid19 hit. Since someone has to come to your house in the beginning, and my family feared I would end up in the hospital, it was decided I would stick to the Big 3 and wait a bit to start the Arikayce . However, for me the Arikayce is in addition to the Big 3. ( I only have to be able to tolerate and continue two of the Big 3 for the trial). Thank you. I am encouraged by your Arikayce comments. irene5

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 1, 2020

@irene5 Hi Irene! I hate that the covid put the skids on your arikayce. I would think it would be similar to the inhaled tobramycin treatment. That did not take anybody to show me the ropes on how to do it. Isn't it like nebulizing anything else like saline or albuterol? @heathert Heather, what do you have to say about it? If it is different, then couldn't you do it with a youtube video?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 1, 2020
In reply to @sounder27 "Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it..." + (show)
@sounder27

Laura34. I have been taking the Amikacin/ Arikayce since last October. I have been taking it every other day with literally no side effects. At the daily dose I began to loose my voice so my pulmonologist changed me to every other day. I am not on the big 3 because 2 of those drugs affect my heart rate adversely and my doc felt I was not able to tolerate them. I was scheduled for a ct in June but doc has said we will wait until August because of the corona virus. At last ct scan I have nodules and 3 cavitation lesions

Jump to this post

@sounder27 Hi there! Did you have to have instruction in person by a healthcare worker to use your Arikayce? Is it different from nebulizing any other med? Thnx!

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 1, 2020
In reply to @alleycatkate "@windwalker @sueinmn ...Hello. I actually had 2 separate injections into my thumb back before this virus..." + (show)
@alleycatkate

@windwalker @sueinmn ...Hello. I actually had 2 separate injections into my thumb back before this virus hit. My thumb was frozen in place and the 2nd injection (about a month after the first) unlocked it. It still is not great but there is a little flexibility. I had scheduled surgery but then I did not want to go through with it after the virus was starting. I am hoping it may resolve on it's own...not sure. My 3 adjacent fingers to that thumb were all triggering and with the shots and some home exercising, they are almost back to normal. Always something. The shots hopefully will bring some relief. Good luck. Kate

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Kate, that is funny that you mentioned your fingers getting 'locked', mine has done the same. I figured it was due to dehydration of something.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 1, 2020
In reply to @laura34 "I appreciate the replies. Yes I have been on on the big 3 daily. Last CT..." + (show)
@laura34

I appreciate the replies. Yes I have been on on the big 3 daily. Last CT showed new nodules and the previous ones are again noted but getting larger. Concerned if maybe I am becoming immune to the antibiotics and that’s why they aren’t working. I mentioned the amikacin awhile ago to a previous pulmonologist who said stick with the triple 3 because the potential side effects from the inhaled amikacin were pretty bad. I will mention it to my new doctor to see what they think. It’s a terrible feeling when they are agitated. I felt as if my lungs would literally sizzle if water was poured over them. Doctor said the same about the steroid. Worried it would make you more vulnerable to infections. Nannette- Hoping for good news for you with your CT and sputum test.

Jump to this post

@laura34, Hi Laura. How long have you been on the Big 3? I had good success without going on them. You can see how I was treated if you click on my picture icon. I like to point that out sometimes to let people know that there are other ways to treat MAC besides the Big 3. It will all depend on your susceptibility test of course. Maybe you can speak to your dr about that.

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