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That’s exactly what I have found out too. And there was a push to get funding in FL for research being there are more cases here than any other state but it vetoed by the current governor. I am also actively looking for trials or studies and there are a couple of places in FL (Tampa and Miami)that specialize but i am too far from either to be accepted.
I assume my pulmonologist will start me on the “big 3” when I see her next week. How are you doing on the drugs? Do they test you culture test you every 3 months? How are the side effects?
Thank you so much for answering!
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I am on the big 3 but last week I failed my second eye field test so my eye specialist took me off ethambutol immediately. I space the meds out in 2 to 3 hr times and it helps with nausea but sometimes I still have to lay down for 20 to 30 mins. I have never had the weak feeling but everyone is different and I stay very active, golf, bowling, bocce, gym, and shuffleboard. I did have diarrhea bad in the beginning but had IBS very bad for over 30 years so am prone to that. Good luck and stay possitive.
Hi -
Regarding quantity of cases in FL - an older population may increase numbers, since there is a correlation with age and disease and severity since Bronchieactasis is chronic and progressive.
I am also on exhaled Arikayce for the MAC - between that and the 3 oral antibiotics, I have a lot of nauseous days!
Our Governor vetoed research??? As you even acknowledged research is ongoing in Tampa and Miami. It’s not taxpayers responsibility to pay for research on an extremely rare condition which is found in every state - not just FL. I do ‘not’ expect or want all the taxpayers in FL to pay for research on MAC when only a select few of us are diagnosed with it. I may die with MAC but not from it unlike the thousands diagnosed with cancer every day.
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I saw my eye specialist last week and failed my 2nd field eye test and she took my off ethambutol immediately. My infectious disease Dr concurred the following day as I already had an appointment with him. Now I have to see Specialist for glaucoma as ethenbutol can give you it plus my mother went blind from it and it is passed from mother to daughter. But this is suppose to be rare so don't stop taking the ethambutol because of this unless you also have a problem. Good luck, I had my first negative culture last month so it isn't all bad.