1. < MAC & Bronchiectasis

Just started a week ago the big three and feel so very sick

Posted by justaussie @justaussie, Sep 27 1:54pm

Hi everyone, I finally started the meds. Terrified for the side effects and to be honest feel completely depressed and sad. I feel so very sick. I've started taking the meds at night before bed as can't tolerate how sick I feel during the day. The next morning feel marginally better but have this vile sick taste in my mouth all day like I want to vomit. I started a probiotic yesterday hoping it will help. I don't know how I'm going to tolerate this long term. I have mild/moderate Mac at present - but have a 4.5cm (or possibly bigger now since ct scan in June) and quite frankly my symptoms were far easier to cope with than these meds. Can anyone tell me what they are taking/using to help alleviate the sick feeling? I really don't think I can take these long time feeling like this. With no quality of life - what's the point. Sadly I'm 59 and would like to be around for awhile but not if life is miserable. Feeling devastated.

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maryjanechilds | @maryjanechilds | Sep 28 4:02pm

Please ask your doctor for ondansetron, an anti nausea medication. When I feel sick I pop an 8 mg dissolvable tablet and get instant relief. Couldn’t live without it.

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lilianna | @lilianna | Sep 28 4:05pm
In reply to @rstel7272 "Ethambutol first in morning, AZ with big dinner worked best for me" + (show)
@rstel7272

Ethambutol first in morning, AZ with big dinner worked best for me

Jump to this post

Rick if you take ethambutol in the morning, is it with your breakfast. But then when do you take your probiotics?

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1 reply
busybeans | @busybeans | Sep 28 4:59pm

And if you find that you cannot tolerate the drugs, there is no shame in that. Also diagnosed at 58, I tried two different times to take the Big 3. My body simply wasn't having it. Nearly 14 years later, I'm still standing. I do airway clearance as often as I can tolerate the accompanying sore throat, see my local and NJH pulmonologists every 6 months, have regular CTs, and the occasional bronchoscopy when hemoptysis flares. I still walk 2-3 miles every day, still play Frisbee with the dog, and still have a reasonable quality of life... but I will never breathe completely easily with NTM, bronchiectasis, and cavitary lung disease disease hanging over my head. We all deal with this as best we can. There are wonderful suggestions on this forum and so many kind and helpful folks. Just know that there is no judgment about what you do or don't do.

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1 reply
lvnl | @lvnl | Sep 28 5:40pm

I'm sorry to hear this ... I'm wondering if others here have experience with the option of losing just the rifampin but keeping the Azithromycin and ethambutol. I'm in the Encore Study and I'm getting those 2 + either Arikayce or placebo every day (no rifampin, which gender seems to be the most difficult). I was told there is good evidence now that just the 2 can be effective, which is why it's ethical to do the study this way, because you are still being treated even if you get placebo & not Arikayce.
I'm wondering this because if all the Big 3 are just impossible, maybe dropping the rifampin is one avenue to try.

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laborday24 | @laborday24 | Sep 28 7:00pm
In reply to @justaussie "Many thanks. I'm actually now taking all three before bed - a few hours after eating...." + (show)
@justaussie

Many thanks. I'm actually now taking all three before bed - a few hours after eating. I can't stand the nausea during the day. During the day I feel sick - but not like I do after taking them at night - then I feel like I want to throw up - so take as close to bedtime as possible and take my sleeping tablets to try and sleep through it. This is pretty miserable. I feel for everyone who has and does go through this - and other similar things. It's really horrible feeling like you're taking poison. I felt so sick - felt like better to take my chances on having quality of life over this. Will do my best to keep on them for as long as I can - but feeling this way - not sure I can. I don't understand why they can't come up with a better treatment. If as they say - the medications have a hard time actually getting to the disease to treat it - then surely a better way of giving them - injecting into the actual bacteria in the lungs or something. I don't know - I'm not a scientist or doctor - but seems there must be something better. Doesn't feel like we're in a very advanced society when this is the best treatment they can come up with. Apologies - I'm just really sad and angry and feel dreadful. Thank you for your support.

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I took for two years never missed a dose and drug resistant to azithromycin. Going to national Jewish health in November

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Rick | @rstel7272 | Sep 28 7:50pm
In reply to @lilianna "Rick if you take ethambutol in the morning, is it with your breakfast. But then when..." + (show)
@lilianna

Rick if you take ethambutol in the morning, is it with your breakfast. But then when do you take your probiotics?

Jump to this post

For me, if allowed, I take all pills with food. I was not to concerned with the probiotics schedule other than it was in the morning

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rbl | @rbl | Sep 28 8:43pm

I used Stomach Settle nausea relief drops, by Upspring, always had them on me when I felt yucky. They are lemon ginger honey and they worked okay for me. Got luck

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irene5 Irene Estes | @irene5 | Sep 29 4:22am
In reply to @justaussie "Thank you. Yes the rifampin is the worst - no doubt - feel so very sick..." + (show)
@justaussie

Thank you. Yes the rifampin is the worst - no doubt - feel so very sick as soon as I take that one. The doctor had me start Azith and ethambutol for 5 days - then added the rifampin. I found the rifampin worst - followed by Azith and etham. Yes - I've read about ginger helping with the nausea and will buy some. Thank you.

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Ask your doctor if you can eliminate the rifampin. My ID doctor told me it may not be necessary- just the other two. Ask about Arikayce. So sorry! Irene5

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suzek | @suzek | Sep 29 10:58am

I am so sorry for those having problems with the meds. I’ve been on them for a month. I don’t have nausea but I have no appetite. I make myself eat. Not much tastes good anymore, but carbs seem more tolerable. The fatigue is overwhelming as is the extreme sweating which alternates with deep chills. Even a jacket and two blankets don’t help. Sometimes I feel like I have mild flu symptoms with no fever. I’ve read Refampin can do several of these things. My ID Dr. doesn’t want to be bothered with questions but will be seeing a new one in a week. Nobody told me anything about cavities.
I’m 74 and feel like some others to enjoy some good days rather than be miserable daily for who knows how long. Yes, I’m very depressed and angry. Thanks for letting me vent.

REPLY
justaussie | @justaussie | Sep 29 11:57am
In reply to @busybeans "And if you find that you cannot tolerate the drugs, there is no shame in that...." + (show)
@busybeans

And if you find that you cannot tolerate the drugs, there is no shame in that. Also diagnosed at 58, I tried two different times to take the Big 3. My body simply wasn't having it. Nearly 14 years later, I'm still standing. I do airway clearance as often as I can tolerate the accompanying sore throat, see my local and NJH pulmonologists every 6 months, have regular CTs, and the occasional bronchoscopy when hemoptysis flares. I still walk 2-3 miles every day, still play Frisbee with the dog, and still have a reasonable quality of life... but I will never breathe completely easily with NTM, bronchiectasis, and cavitary lung disease disease hanging over my head. We all deal with this as best we can. There are wonderful suggestions on this forum and so many kind and helpful folks. Just know that there is no judgment about what you do or don't do.

Jump to this post

I'm glad to hear you are coping. If you don't mind me asking what size was your cavitary lesion when you were diagnosed and what size was it at your most recent CT scan? So glad you can play frisbee with your doggie and still walk 2 to 3 miles a day - that's wonderful. Thank you for sharing. Best wishes, Justine

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