1. < MAC & Bronchiectasis

Most people quit their job under Big3?

Posted by maliko @maliko, Nov 12 9:30pm

Hello member. I just got diagnosed with Mac and so many thoughts are going through my head. My life just turned upside down.
My pulmonologist brought up Big 3 treatment and reading all the horrible side effects, I'm wandering if most people had to quit their job. Thank you

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maliko | @maliko | Nov 18 8:36pm
In reply to @sportyginger "I have not been able to work in over a year already. If it wasn’t for..." + (show)
@sportyginger

I have not been able to work in over a year already. If it wasn’t for my spouse working, I would be dead. I’ve lost over 100 lbs. Just cannot believe there is no system in place to help someone who has worked all my life. I was supposed to be getting VA benefits but no one wants to help. I can’t even get a #GoFundMe off the ground.
Pharmacist filling my Ethambucol whispered, « You have TB? » Like, no. That is why you do not get access to my records, lady! It’s called NTM & it’s not ‘supposed’ to be contagious.

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So sorry you are going through hard times. Your side effects from meds are so bad or are your symptoms from mac are making you feel sick?

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reneemc | @reneemc | Nov 19 7:56pm
In reply to @laborday24 "What is clofazimine" + (show)
@laborday24

What is clofazimine

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A repurposed leprosy drug

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reneemc | @reneemc | Nov 19 7:58pm
In reply to @suzyqueue "I've been on the Big 3 every day for 6 years and the Clofazimine every day..." + (show)
@suzyqueue

I've been on the Big 3 every day for 6 years and the Clofazimine every day for a little over a year. I initially started the inhaled Arikayce every day for the first couple years but was able to decrease it to 3 times a week. I also nebulize Levalbuterol then hypertonic saline solution twice a day. I also Mycobacterium Avium Intracellure also. I had a 10 cm cavity grow in my upper left lobe within a month or 2 before starting the antibiotics. Once I started all the meds and up to now, it has shrunk to 4 cm.

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Suzy, how long were you on meds before cavity shrunk?

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maliko | @maliko | 2 days ago
In reply to @pacathy "Have you seen ENT for the mucus in throat? On any nasal sprays or rinses? Getting..." + (show)
@pacathy

Have you seen ENT for the mucus in throat? On any nasal sprays or rinses? Getting my post nasal drip treated has stopped my horrid coughing fits. The little nagging cough responded to asthma meds.

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What nasal spray worked for you to stop thr nasal drip?

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1 reply
pacathy | @pacathy | 2 days ago
In reply to @maliko "What nasal spray worked for you to stop thr nasal drip?" + (show)
@maliko

What nasal spray worked for you to stop thr nasal drip?

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Mayo mixed triple spray with mometazone, Ipratropium and Diphenhydramine. Similar meds are available, but this doesn’t have the bad taste and is just one sprayer.

I also use mometazone (from compounding pharmacy) in my saline rinse bottle 1-2x/day.

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blm1007blm1007 | @blm1007blm1007 | 23 hours ago
In reply to @maliko "Just an update on my condition. Got report from my second chest scan done today. No..." + (show)
@maliko

Just an update on my condition. Got report from my second chest scan done today. No abnormality no bronchieactasis nothing. It was same result 7 months ago too. So how is this possible? I cultured mac and my lungs are perfectly normal? I initially thought I had lung cancer but with 2 clean CT scans, I doubt that is the case.
Maybe I don't have mac, I'm so confused

Yet I'm coughing all day and clearing throat with blood in saliva.

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When I was at NJH they did not do a CScan of my sinuses however at Tyler that was one of the additional tests the doctor ordered. Luckily no sinus problem for me nor did three ENT's find any sinus or post nasal drip months prior to the CScan of the sinuses.
Did anyone order a CScan of your sinuses? What do you think?
Barbara

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blm1007blm1007 | @blm1007blm1007 | 22 hours ago
In reply to @jsblair "I started taking Big 3 several months ago 3x a week (mild bronchiectasis and MAC) no..." + (show)
@jsblair

I started taking Big 3 several months ago 3x a week (mild bronchiectasis and MAC) no side effects at all and my latest CT scan looked better! 'Overall decreased nodularity' . I too was hesitant (scared, actually) to start the antibiotic regimen, reading about potential side effects.

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So glad you posted your results.
Would you have time to tell me what you do for the BE and MAC other than the antibiotics.... do you take any supplements and probiotics. What is "several months ago" if you can remember?
Your post is encouraging and I want to do all that I can but like others I am somewhat scared of what can and does possibly happen to a few others when taking the medications.
Barbara

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arleneg | @arleneg | 21 hours ago

I have been on the big 3 since July with no problems other than a little diarrhea. I found taking them after dinner works best for me . Hope you do well.

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pfurcht123 | @pfurcht123 | 14 hours ago

Hello M, I have been on the 3 antibiotics for 4 months now. Coming up on the 1/3 done mark!!! Yea!! I too was VERY anxious re starting meds, however , I find that working helps me. If not, I sit around and focus on stuff that is not
Helpful to me. I have had to cut back on how late I expect myself
To keep going at nite ( probably part of the reason I contracted this.) I have had to look into meds to help
With my mood . You need to listen to YOUR body. I am 68 and was able to resume my yoga and gym. My lungs feel so so much better with treatment.
As challenging as it might be, hang in there! Only treatment will help you get your full vigor and life back. Good luck!!

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