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.

@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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@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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@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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@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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@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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@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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@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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@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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@papillion

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

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Probably everybody has some bronchiectasis as it usually goes hand-in-hand with NTM

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@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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Oh I see thank you very much for the info

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@judyhodgern

Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much she’s a toy poodle at 7 pounds —12 yrs old. I love dogs!

I find your discussion very interesting because I’ve been trying to find somebody that’s on Arikayce!! Can I ask you how long you have been on it ? I have been on it going on three months. Mild Sore throat and raspy voice are my symptoms. I have not taken any sputum specimen yet do you suggest that I need one now since I’ve been on it two months or should I wait? My doctor here in Clearwater and my doctor at NJH I have not said to send one but I a have to advocate for myself most of the time and call the doctors. I have clear sputum with pink plugs of sputum in it and I wondered if your Mac Expectorates are manifesting That? I wonder if the Arikayce kills the bacteria and then I cough up The dead MAC. I don’t know if that’s the way it works but it would be interesting since I keep bringing the same stuff up. I would love to hear what you know about taking this med. Thank you so much

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My doctor (also in Clearwater, FL) recommended Arikayce, along with Big 3 antibiotics, following recurrence of MAC. I had been off the antibiotics for two years. I decided not to take Arikayce, primarily because of cost factor, very expensive even after insurance coverage. Your symptoms sound tolerable, but I was worried about some of the "common and serious" side effects that I read about.

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@diane36

My doctor (also in Clearwater, FL) recommended Arikayce, along with Big 3 antibiotics, following recurrence of MAC. I had been off the antibiotics for two years. I decided not to take Arikayce, primarily because of cost factor, very expensive even after insurance coverage. Your symptoms sound tolerable, but I was worried about some of the "common and serious" side effects that I read about.

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Hi Diane this is that Judy and I was wondering if maybe in a private email you could send me a the name of your doctor in Clearwater? I’m not always happy with mine ——his office Is not organized. I was wondering if you had a doctor that you really really liked?

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