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.

@toni1132

I can only say my PCP doctor is adamant about not ever taking steroids of any sort. He said it would be like throwing gasoline on a fire ( regarding the MAC). I don't know if anyone else can shed some light on this topic. Toni

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@toni1132 That is correct. I had to get permission from my doctor at Vanderbilt ( when we lived in Tennessee ) to have steroid shots in my back. I was cleared for that because it is not the same as “taking” a steroid like prednisone for inflammation. I’m guessing that with anything, benefits have to outweigh risks. irene5

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@irene5

@toni1132 That is correct. I had to get permission from my doctor at Vanderbilt ( when we lived in Tennessee ) to have steroid shots in my back. I was cleared for that because it is not the same as “taking” a steroid like prednisone for inflammation. I’m guessing that with anything, benefits have to outweigh risks. irene5

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Irene I'm glad you clarified. I'm hoping for an injection in my thumb while I wait for discretionary surgery to reopen.
Sue

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@laura34. I was on the big 3 for 18 months ending in October. I have had slight burning sensation in different parts of my lungs off and on since then but have been healthy otherwise EXCEPT for a bad case of Inflenza A from March 1 to April 15….I tested positive for flu, not yet tested for Covid. This was the worse flu I have ever had. Has anyone on this forum had the flu this year? We simply shouldn’t get sick as it was really hard to get it out of my lungs…..and I was weakened beyond belief…muscularly and heavy coughing….bringing up tons of mucus.

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@hydrang3a

@laura34. I was on the big 3 for 18 months ending in October. I have had slight burning sensation in different parts of my lungs off and on since then but have been healthy otherwise EXCEPT for a bad case of Inflenza A from March 1 to April 15….I tested positive for flu, not yet tested for Covid. This was the worse flu I have ever had. Has anyone on this forum had the flu this year? We simply shouldn’t get sick as it was really hard to get it out of my lungs…..and I was weakened beyond belief…muscularly and heavy coughing….bringing up tons of mucus.

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@hydrang3a I am so sorry you had the flu. I am sure many of us live in daily fear of getting that and/or Covid19. Did you get the flu or pneumonia shot? irene5

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@sueinmn

Irene I'm glad you clarified. I'm hoping for an injection in my thumb while I wait for discretionary surgery to reopen.
Sue

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Oh good Sue! Apparently, epidural steroid shots are ok to have when you have MAC. The thumb shot should help you for a bit. You just have to be careful of the frequency. I have needed a surgery where they take a tendon from your forearm and use that tendon in your thumb as a cushion. It is quite involved. My brother, who is a pianist, had it done in Boston on both thumbs. It was successful! Not having use of your hands due to the pain of arthritis is no fun. Irene

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@irene5

Oh good Sue! Apparently, epidural steroid shots are ok to have when you have MAC. The thumb shot should help you for a bit. You just have to be careful of the frequency. I have needed a surgery where they take a tendon from your forearm and use that tendon in your thumb as a cushion. It is quite involved. My brother, who is a pianist, had it done in Boston on both thumbs. It was successful! Not having use of your hands due to the pain of arthritis is no fun. Irene

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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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@hydrang3a

@laura34. I was on the big 3 for 18 months ending in October. I have had slight burning sensation in different parts of my lungs off and on since then but have been healthy otherwise EXCEPT for a bad case of Inflenza A from March 1 to April 15….I tested positive for flu, not yet tested for Covid. This was the worse flu I have ever had. Has anyone on this forum had the flu this year? We simply shouldn’t get sick as it was really hard to get it out of my lungs…..and I was weakened beyond belief…muscularly and heavy coughing….bringing up tons of mucus.

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@hydrang3a This past fall, I had a 5 day run of a very bad headache, which I rarely get. I went to the pharmacy to pick up my usual meds and they asked me if I wanted to get a flu shot. I noticed that they asked every single person that. I should have said 'no' because headaches for me usuallyindicate something more is going on. I rarely get them unless an illness is coming on. I wasn't thinking, and I said "sure, I'll get my flu shot". I get one every year without incident. But, this time, I came down with flu-like symptoms the very next day. I could not even move a muscle for three straight days without it causing extreme pain in my skull. I did not eat, drink or move those three days following that shot. Then, it took awhile to recover from it. I don't know what I had, but it was wicked.

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@nannette

@laura34, yes, Laura, I always have the burning but mine is relatively mild. I always feel it and have always thought that's just the chronic inflammation part of the chronic lung disease. I took the big also about two years and my MAC has come and gone. Not sure what it's doing right now as I will have a CT scan and sputum test in June. I mentioned it to my infectious disease doctor once and she said they have been using Azithromycin for the inflammation but I didn't ask if it was a maintenance dose or just for a few months. My other guess is steroids but maybe someone else knows on this site. Nan

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I too had that burning sensationfor several yrs. I was worried that I had cancer or something, but it turned out to be acid refux. My esophagus was so burned by my own gastric juices coming up my throat at night. Once I got the reflux under control, the burning went away and my esophagus healed. While going through it; I thought it was my trachea that was burning, but it wasn't.

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@irene5

@hydrang3a I am so sorry you had the flu. I am sure many of us live in daily fear of getting that and/or Covid19. Did you get the flu or pneumonia shot? irene5

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@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October…got the flu in March….was told later that the flu shot is only 50% prevention effective

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@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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@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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@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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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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@irene5

Oh good Sue! Apparently, epidural steroid shots are ok to have when you have MAC. The thumb shot should help you for a bit. You just have to be careful of the frequency. I have needed a surgery where they take a tendon from your forearm and use that tendon in your thumb as a cushion. It is quite involved. My brother, who is a pianist, had it done in Boston on both thumbs. It was successful! Not having use of your hands due to the pain of arthritis is no fun. Irene

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@irene5 I hope for relief, but I'm well overdue for the surgery, so it may not help. This will be my second CMC thumb joint rebuild, the right hand was done with a newer technique called the tightrope 3 years ago. Much simpler and quicker recovery than the tendon process, and it has been great. Looks like our September trip to Europe is off, so I hope to be able to do it in late summer.
Sue

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@sueinmn

@irene5 I hope for relief, but I'm well overdue for the surgery, so it may not help. This will be my second CMC thumb joint rebuild, the right hand was done with a newer technique called the tightrope 3 years ago. Much simpler and quicker recovery than the tendon process, and it has been great. Looks like our September trip to Europe is off, so I hope to be able to do it in late summer.
Sue

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@sueinmn I am sorry about your trip. Thank you Sue for the new info for me about your right hand. I was supposed to have the tendon one done in 2014, but I was still teaching and wouldn’t take the time. (I used to be a type A personality.) My hand doctor had said I would need a block because the pain is “bumpy” afterwards. I can’t have general surgery now, so if I ever am able to have my hands done, maybe that will be an option if it is less invasive. Thank you. When I had carpal tunnel surgery done years ago ( before MAC), he did several steroid shots while I was “out.” That lasted a long time. I sincerely hope you get relief! Irene

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@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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@alleycatkate Ouch! That must have been awful! Glad your fingers are doing better. irene5

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@hydrang3a

@irene5 and @windwalker .,.i had both the flu shot and the pneumonia shots in October…got the flu in March….was told later that the flu shot is only 50% prevention effective

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@hydrang3a That must have been so frustrating for you. Did you have the high test shot or the regular one? The high test one gives your immune a boost to react. My doctor says you can get two flu shots during the year. I think the 2019 shot was specific for one kind of flu over the other. I certainly hope 2020 is kinder to you that way. irene5

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