1. < MAC & Bronchiectasis

Rifampin discontinued due to side effects. Looking for feedback.

Posted by kayskid @kayskid, Aug 21, 2020

Pulmonologist stopped Rifampin after 4 months. I have been sick with nausea the whole time and starting to bruise. (I have a coexisting bleeding disorder). He said continue Ethambutol and Azythromycin 2 more months then repeat CT and culture. I am worried that I will be off and on these meds for years, so tried to stick it out, but now my teeth are stained, I have lost weight and now the bruising. (I must have been a sight as I was neaseated and then tried to avoid the elevator by walking up 3 flights with a mask on then became short of breath and dizzy). Poor judgement but i never had trouble with stairs before. It scared me.

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irene5 Irene Estes | @irene5 | Aug 22, 2020
In reply to @judyhodgern "Irene you sound like you are on a good track to getting rid of the bad..." + (show)
@judyhodgern

Irene you sound like you are on a good track to getting rid of the bad guy. Thank you Irene that was very helpful for me. I had not talked to anybody that has been on Arikayce. I am coughing more also also!! When you say the big three do you mean Rifampin, Etambutol and azithromycin. I am not on rifampin but I’m on colfazamine probably for the abscessus that I was on prior and I may still have it I’m not sure. I had surgery also in December URL-of lung. Thank you so much for your information Irene! I pray for your continued wellness in the future. Judy

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Thanks Judy. One day at a time! Irene

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 22, 2020
In reply to @irene5 "@judyhodgern Judy I have been on Arikayce plus Azithromycin and Etambutol since the beginning of June...." + (show)
@irene5

@judyhodgern Judy I have been on Arikayce plus Azithromycin and Etambutol since the beginning of June. I had been on and off the Big 3 since 2016, but the MAC continued to spread and the side effects ( for me) of the three meds were beyond unpleasant. As you must know, Arikayce is for people with retractable MAC. Because I am not a coughing kind of gal ( although since Arikayce I am) I will have to have a bronchoscopy in three months. I have recently had to take a short break from Arikayce due to surgery, but I believe this medication along with the two others will kill the MAC because it goes directly into your lungs. Prior to my surgery I was actually starting to have more energy and feel better overall. Arikayce appears to be a drug that MAC does not like, and that’s a good thing! irene5

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Irene, your comment is music to my ears!!! In all of the yrs I have known you; you said you were getting more energy back and feeling better overall. I believe the surgery was a minor setback, and you will continue to feel better and better until you beat this.

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1 reply
irene5 Irene Estes | @irene5 | Aug 22, 2020
In reply to @windwalker "Irene, your comment is music to my ears!!! In all of the yrs I have known..." + (show)
@windwalker

Irene, your comment is music to my ears!!! In all of the yrs I have known you; you said you were getting more energy back and feeling better overall. I believe the surgery was a minor setback, and you will continue to feel better and better until you beat this.

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Thanks Terri!

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poodledoc | @poodledoc | Aug 22, 2020
In reply to @judyhodgern "Thank you Bill — several things that you said that has made me feel more assured..." + (show)
@judyhodgern

Thank you Bill — several things that you said that has made me feel more assured about Arikayce. Do you have fluid left in your neb chamber below your inhale nozzle? I have 2-3cc—each Rx. Is said to be exhalation residue & saliva from the nebulizer Rx. That medication is like liquid gold so I wanted to be sure I wasn’t wasting anything.

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Judy, There will always be 2-3 cc left over in the bottom of the cup, they recommend you pour that back into the little bottle and cap it so as to not contaminate the environment.

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1 reply
rits | @rits | Aug 22, 2020
In reply to @irene5 "@kayskid I’ve started this several times so hopefully I can finish it. There have been studies..." + (show)
@irene5

@kayskid I’ve started this several times so hopefully I can finish it. There have been studies that suggest Rifampin is not needed as a third med. Rifampin can interact with thyroid medication as well as others like Premarin. So if you can go without it, it should be ok in terms of MAC outcome. Unfortunately, some of us are on the meds for a long time. Weight loss also happens for some of us. If you can drink Ensure or other nutritious, high calorie, and protein drinks (Ex. Garden of Life) that might be beneficial for you. Your becoming dizzy etc. may have been a result of wearing the mask up all those flights and breathing in all that CO2. Take care. irene5
.

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I took two doses of rifampin and had to stop due to cramps so bad that I considered going to the er. My doctor told me about the studies and said it was not necesary to substitute a third drug. That was in March 2019 so I would think the results should be ready soon. I am one of the lucky ones. The two drugs worked and I was negative by June 2019. I stayed on the two drugs until May 2020 and also did 4 months of Arikayce. My latest sample apparently was lost on the mail. I need the lab in Tyler to send me more mail in kits.

I hope Arikayce works for you. You have been dealing with this long enough!

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rits | @rits | Aug 22, 2020
In reply to @poodledoc "Judy, There will always be 2-3 cc left over in the bottom of the cup, they..." + (show)
@poodledoc

Judy, There will always be 2-3 cc left over in the bottom of the cup, they recommend you pour that back into the little bottle and cap it so as to not contaminate the environment.

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I used paper towels to sop up the excess.
I have 26 vials left over since I stopped abruptly last December. That big box has been taking up room in my refrigerator long enough. It will go out with the garbage.

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1 reply
poodledoc | @poodledoc | Aug 22, 2020
In reply to @rits "I used paper towels to sop up the excess. I have 26 vials left over since..." + (show)
@rits

I used paper towels to sop up the excess.
I have 26 vials left over since I stopped abruptly last December. That big box has been taking up room in my refrigerator long enough. It will go out with the garbage.

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Rits, Why did you stop taking the Arikayce?

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1 reply
rits | @rits | Aug 22, 2020
In reply to @poodledoc "Rits, Why did you stop taking the Arikayce?" + (show)
@poodledoc

Rits, Why did you stop taking the Arikayce?

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I had started on it in July and it caused an
exacerbation so I stopped. My doctor had me try again in August but 3x a week instead of daily. That was doable for a while but in December, my breathing was so bad that I had to stop. I have chronic bronchitis (copd) along with the bronchiectasis and my decrepit lungs do not like nebulized drugs.

It apparently did get rid of psuedomonas and klebsiella although the psuedomonos may be back again.

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2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 23, 2020
In reply to @rits "I had started on it in July and it caused an exacerbation so I stopped. My..." + (show)
@rits

I had started on it in July and it caused an
exacerbation so I stopped. My doctor had me try again in August but 3x a week instead of daily. That was doable for a while but in December, my breathing was so bad that I had to stop. I have chronic bronchitis (copd) along with the bronchiectasis and my decrepit lungs do not like nebulized drugs.

It apparently did get rid of psuedomonas and klebsiella although the psuedomonos may be back again.

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Hi Rita. Do you plan on getting tested for pseudomonas soon? Also, may I ask what state you live in?

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2 replies
papillion | @papillion | Aug 23, 2020
In reply to @windwalker "Hi Rita. Do you plan on getting tested for pseudomonas soon? Also, may I ask what..." + (show)
@windwalker

Hi Rita. Do you plan on getting tested for pseudomonas soon? Also, may I ask what state you live in?

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I had this problem many things. Coughing up blood scary. How does other people handle this who also have bronchiectasis

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