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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.
Thanks Terri!
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.
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!
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.
Rits, Why did you stop taking the Arikayce?
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.
Hi Rita. Do you plan on getting tested for pseudomonas soon? Also, may I ask what state you live in?
I had this problem many things. Coughing up blood scary. How does other people handle this who also have bronchiectasis
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?