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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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.
@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
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."
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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Sue
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.
@kayskid, worry is such a nasty thing, I know how you feel,now you have your plan you can worry less, I hope you get to have worry free months ahead. Take care Heather
Hi Poodledoc. Did you get culture results?
Yes It was officially Negative August 27. I have a second sputum sample cooking right now, final results due Sept 24. I had to stop taking Arikayce due to Tinnitus. Still on Azithromycin and Ethambutol. I strongly believe the Arikayce was responsible for my culture conversion, even though I only took it for 10 weeks. Thanks for asking, Bill
@poodledoc I believe the same thing, Arikayce did the trick for me too.