Rifampin discontinued due to side effects. Looking for feedback.

Posted by kayskid @kayskid, Aug 21 4:04pm

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.

@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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@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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Diane, I was prescribed Arikayce and was initially told after insurance I would still owe $3,000/month. Ouch! Then I was told the drug company has a "program" to help defray the cost. They do ask for your income level. So my monthly cost is a $10 copay per monthly shipment. You might ask your doctor to check into this for you. It is a bit of a process they have to go through. As to side effects, the generic drug is Amikacin which in the past has only been available IV (not absorbed orally) and is prone to serious side effects. The inhaled version requires a much lower dose with much less possibility for side effects.

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Thank you. How interesting! I was told I'd have to pay $450 per month in addition to what insurance covered. Will see my doctor tomorrow and discuss.

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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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Terri, I was clear of pseudomonas last summer but it showed up again in June of this year in a crazy way.

Staph and candida showed up in my April sample, nothing else. The doctor decided not to treat

In June, pseudomonas but nothing else showed up.

But, I didn't send a sample in June! My doctor and I figured out that fed ex must have found the sample they lost in April and delivered it and the lab ran it. They couldn't have known that it was 2 months old.

The bottom line is that the pseudomonas showed up in June in a sample sent in April but did not in another one sent a week or two later. So strange. Have to laugh!

We were going to see if it showed up in the next sample but I sent it 3 weeks ago and they haven't received it. The lab was supposed to send more kits but they haven't arrived. I need to contact my doctor and have her arrange for them to be sent again. Sigh

I live in Chicago. Illinois. How about you,?Where do you and Minnie live,?

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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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@papillion I also cough up blood, my dr said if there is a few teasp dont worry if it is a few tblsp call the ambulance. It is scary you are so right. Take care Heather

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@judyhodgern

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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Not sure how to do a private email, but I have some of the same concerns that you do. Like the doctor, but not the practice.

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@diane36

Not sure how to do a private email, but I have some of the same concerns that you do. Like the doctor, but not the practice.

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There is a website—-Www.mayoconnect.org—-Get-started-on-connect It tells how to do private email.

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