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Rifampin discontinued due to side effects. Looking for feedback.
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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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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Probably everybody has some bronchiectasis as it usually goes hand-in-hand with NTM
Oh I see thank you very much for the info
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.
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?
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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2 ReactionsThank 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.
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,?
@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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1 ReactionNot 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.
There is a website—-Www.mayoconnect.org—-Get-started-on-connect It tells how to do private email.