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.

@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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Thanks for all this information! After only four days off the Rifampin, I am feeling better. I am praying that the two drug regimen will work and my plan is to take a two month holiday from worrying.

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@kayskid

Thanks for all this information! After only four days off the Rifampin, I am feeling better. I am praying that the two drug regimen will work and my plan is to take a two month holiday from worrying.

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@kayskid Ah, the worry factor. Worry is my middle name! If there is something to worry about, I am all over it like white on rice! With MAC we only have a certain amount of control, and that’s basically to do the treatment or not to do the treatment and then hope for the best. And time marches on. I have found in life that the things we worry about, most often, aren’t the things that come to fruition. Sometimes though it’s hard to turn off the hamster on the wheel in our heads. Speaking about taking a break from worry tells me that you can do it! A previous mentor had a little finger play she would repeatedly do by alternately touching each finger to the thumb and saying, “ I am at peace.” This little exercise is also probably good for arthritic fingers. Don’t forget, it takes just as much effort to worry as it does not to worry! Sounds like a good plan! irene5

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@kayskid

Thanks for all this information! After only four days off the Rifampin, I am feeling better. I am praying that the two drug regimen will work and my plan is to take a two month holiday from worrying.

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Good morning Kay! I like that plan of yours to take a break from worry. Here is my favorite saying:" Don't let the worries of tomorrow steal from the joys of today."

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@rits

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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Good morning! Ah…Chicago. I have always wanted to visit that grand city. Perhaps one of these days I will. I would love to buy a Sprinter travel van and tool around the U.S. And I just might. Minnie and I live in a little coastal town called 'Bluffton'. It is across the bridge from Hilton Head Island. I love it here. The weather is perfect most of the year except for July and August (hot & humid. What I like about the area is that the soil is sandy, so after a rain; the water drains away quickly. That makes it less damp and I can breathe better. We do not get a ton of rain due to air flow pattern coming off of the ocean. Again, less damp, and I can breathe better. Bluffton has a nice video if you care to see what it looks like here. It is very cute.

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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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@diane36 – See the little envelop icon at the top of the page? That is for sending a private message. Click on it to bring up the message center, the click the "Compose" button & then follow the prompts to send. Let me know if you need more info.
Sue

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@windwalker

Good morning! Ah…Chicago. I have always wanted to visit that grand city. Perhaps one of these days I will. I would love to buy a Sprinter travel van and tool around the U.S. And I just might. Minnie and I live in a little coastal town called 'Bluffton'. It is across the bridge from Hilton Head Island. I love it here. The weather is perfect most of the year except for July and August (hot & humid. What I like about the area is that the soil is sandy, so after a rain; the water drains away quickly. That makes it less damp and I can breathe better. We do not get a ton of rain due to air flow pattern coming off of the ocean. Again, less damp, and I can breathe better. Bluffton has a nice video if you care to see what it looks like here. It is very cute.

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Chicago is a beautiful city with a lot of interesting things to see and do – when there is no quarantine. However, like big cities everywhere, we are not rv friendly which I
Iearned a few years ago when friends doing a cross country trip stopped here for a few days. I hope you do come and I would be honored to show you my city.

Bluffton sounds perfect. I look forward to seeing the video.

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