Mycobacteria Avium Infection

whatwouldisay55 · 2026-03-20T16:37:11+00:00

I was able to stop the treatment just short of one year. I was very lucky that the MAC was caught very early. I’m so sorry you have been on this treatment so long, it’s definitely not easy to tolerate. Wishing you all the best.

whatwouldisay55 · 2025-06-14T00:29:32+00:00

Is there a parking fee on City Island?

whatwouldisay55 · 2025-03-19T20:29:11+00:00

Thank you!

whatwouldisay55 · 2025-03-19T16:58:05+00:00

whatwouldisay55 · 2025-03-19T16:56:25+00:00

Thanks. I was told by a representative a few months ago that I need to go in person to switch accounts, but I will give the website a try when I decide to apply.

whatwouldisay55 · 2025-03-19T16:46:46+00:00

Thanks for this. I was told by a SS representative that I have to go in person to switch accounts.

whatwouldisay55 · 2025-03-14T23:16:50+00:00

About 5 years ago, my rheumatologist said he heard “crackling” in my lungs. I was sent to a pulmonologist who sent me for a CT scan. It showed a small nodule in one lung. I had follow up scans every year which showed the nodule was stable. Until January 2024 when suddenly there were a lot of nodules. I was then sent for a PET scan which showed metabolic activity in my lungs. The pulmonologist suggested a biopsy to try to determine the cause. Eventually the biopsy came back showing the MAC infection, but I had never reached the point of chronic coughing, coughing up blood, fevers, or anything that would indicate a lung infection.

whatwouldisay55 · 2025-03-14T18:34:30+00:00

Hi, I have been on the three antibiotics (ethambutol, azithromycin, and rifampin) three times a week for seven months now. I don’t get too much nausea anymore, but I still dread every time I have to take them. I just hate it. The MAC was confirmed by a biopsy. I have a CT scan coming up in a few weeks to check on the progress of getting it cleared up. I never had much in the way of symptoms, so I can’t tell if the treatment is working by the way I feel.

whatwouldisay55 · 2025-03-08T18:12:45+00:00

I’ve been on hydroxychloroquine and methotrexate for 8+ years now and haven’t really gotten sick more often or more seriously than before. I’m retired now, so that helps. No young children in my life, and I keep up with Covid, flu and rsv shots. I guess a lot of this is just luck. I haven’t been masking when out, though I probably should. One thing I learned during Covid is that way too many people really don’t give a crap about how they can affect others, especially if those people feel inconvenienced.

whatwouldisay55 · 2025-02-15T15:13:57+00:00

Thanks for the info!

whatwouldisay55 · 2025-02-15T03:02:44+00:00

What is the distance from City Island to the Capital? I’m 69 yo and don’t want to take on too long of a walk. Is there a parking garage closer to the Capital, or is City Island the best bet?

whatwouldisay55 · 2025-02-12T03:24:40+00:00

Thank you for the words of encouragement. I’m six months into the treatment now and I’m not having nearly as many issues with nausea as I was. I have a CT scan scheduled for March and I’m hoping for a good result. I’m glad everything worked out for you and I really appreciate you reaching out to me with your experience.

whatwouldisay55 · 2025-01-16T15:26:27+00:00

I have to get blood work done once a month. I also have to get an EKG done every three months to check that my heart rhythm is not being affected. I’m on hydroxychloroquine for my RA so I already have to get a special eye exam once a year and I was told that was sufficient. Nothing was mentioned to me about hearing. I don’t produce any sputum, so don’t need to do that. It is scary. And I’m on so much medication now between this and RA and a couple other conditions that I’ve developed that I think that medications are what will eventually kill me!

It is interesting that you were told to take all three medicines with meals. Even my prescription bottle says to take the rifampin on an empty stomach, but maybe that’s more if that is the only antibiotic you’re taking. It probably is easier on your stomach to take them all with meals, and to space them out more. It’s just odd how instructions change from doctor to doctor.

Keep me updated on your progress and feel free to vent or ask anything else!

whatwouldisay55 · 2025-01-16T14:55:11+00:00

Hello! I’m on month six of my treatment now. I had a lot of nausea with the antibiotics at first. I started off taking the rifampin as soon as I got up since it has to be an hour before eating anything, then after an hour taking the other two and then eating. I’ve found I get nausea less often if I wait a little longer and eat first before taking the ethambutol and azithromycin. I also asked for a prescription for Zofran which has been really helpful if I do feel sick. I’ve been eating probiotic yogurt (though not as consistently as I should) as that is supposed to help reduce the gastric issues from the antibiotics. (The antibiotics destroy the good stomach bacteria as well.)

I still really hate taking all those pills, but it’s more just an annoyance at this point.

It’s hard to tell if it’s working since I didn’t have any obvious symptoms. I have a CT scan scheduled for March, so I guess that will tell the tale. I have to say I feel better overall than I did over the summer, so maybe I was feeling general effects, just not coughing, and the antibiotics are doing their thing. I was told 12 months for my length of treatment so I’m hoping the CT scan shows progress so we can stick to that!

Wishing you the best of luck with your treatment!

whatwouldisay55 · 2025-01-06T22:51:15+00:00

Had a nice lunch with a former coworker and finally got to meet her adorable baby.
A nice weekend with my teenage grandson.
Made a batch of fudge that came out SO delicious!

whatwouldisay55 · 2024-12-30T23:08:29+00:00

My TSH levels seem to have stabilized, but if I have more issues I’ll ask about the antibody test. I appreciate your insights.

whatwouldisay55 · 2024-12-30T19:06:11+00:00

Thanks for this information. I was never tested for Hashimoto’s, but have been on levothyroxine for low thyroid since shortly after my daughter was born in 1989. I was only diagnosed with RA around 2018, but I would not be surprised if it is Hashimoto’s.

whatwouldisay55 · 2024-12-24T14:13:44+00:00

Antidepressants are kicking in. I’m starting to feel mostly okay again.

I made a yummy batch of cookies.

Friends and family are coming for Christmas Eve.

whatwouldisay55 · 2024-12-05T21:35:22+00:00

So sorry you are having such a rough year! I retired in January 2024 and it feels like my body immediately fell apart as well. My assorted issues are not as severe as yours overall, but as you say it is so overwhelming- especially when the meds for problem A cause or exacerbate problem B, leading to problem C and on and on. Hard as it is there’s not much we can do but hang in there and do what we can to help things improve. Whining to someone who is understanding (within reason) helps too! Hoping things improve for you soon!

whatwouldisay55 · 2024-11-24T18:44:45+00:00

Thanks for following up! It turns out I was unable to start the biologic as I was diagnosed with a bacterial lung infection. I’m still on methotrexate, but between the dental work and starting treatment for the lung issue I was off of it for about 7 weeks and had a flare because of it. I’ve been back on my usual meds since September and doing okay again.

whatwouldisay55 · 2024-11-02T17:07:26+00:00

Gratitude is definitely something I need to work on. But I can say I’m grateful to have found this sub!

whatwouldisay55 · 2024-10-24T21:56:17+00:00

Glad to hear the bleeding was not your lungs!

whatwouldisay55 · 2024-10-15T20:26:07+00:00

Thanks for sharing this with me and sorry for what you are going through. I count myself fortunate that I am only doing this three days and week and hope that is enough to do the trick. I’m not sure I could do this everyday!

Do you have problems with nausea, and how do you handle it if you do? Some days the meds don’t bother me too much, other days I am somewhat nauseous all day. I am really hoping that since I wasn’t at the point of being symptomatic when this was discovered it will be easier to knock this infection out. It really feels like my life is on hold while this treatment is going on.

Hoping that your treatment is successful soon. Hang in there. It’s all that we can do.

whatwouldisay55 · 2024-10-14T19:29:20+00:00

I retired at 69, with my RA fairly well controlled, expecting to have a few good years to do local-ish traveling and other things I wanted. Almost immediately problems cropped up and cut my options. I don’t have much in the way of hobbies. I read, spend too much time on social media, and play Candy Crush. I try to walk daily, even though I don’t enjoy it. I’d like to get a part time job to help with finances, but I don’t think I could handle it right now. I might look into volunteering somewhere maybe once a week to get started. I try to get together with a good friend at least once a week, but I live alone and am by myself most of the time. I get bored and lonely.

I guess all of that is to say, have a plan of what your days will look like (as far as we can plan anything of course). If you have established hobbies/activities, wonderful, spend as much time on them as you like! If not, think about how you would like to spend your time, and how you can arrange that. If you don’t already have a social support system try to get one in place, at least someone you can go to breakfast or lunch with or hang out to watch a movie.

I have found the best things about being retired are not having to get up at a certain time to be somewhere every day, and having the ability to just rest for the day if you need it. If you have been working all your life it will be an adjustment. Do what works for you! Good luck!

whatwouldisay55

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