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MAC & Bronchiectasis | Last Active: Sep 10 8:01am | Replies (106)
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Replies to "Thank you. That’s what worries me about the cost if that’s what they give me are..."
Hello, Laborday24.
Quite a few people are granted assistance with payment and end up paying very little, so don’t let concern about cost deter you from this game changing medication.
No, I am not drug resistant. After six months on Azithromycin and Ethambutol, I still had a few colonies of mycobacterium on culture. My doctor’s experience told her to add the Arikayce, which at that time could not be added until after six months of the original protocol. In one month, zi was culture negative. The current guidelines are for 18 months of treatment after the first negative culture. I will finish my treatment in April 2024. The only side effect I have had on the MWF treatment is profound fatigue, and that did not begin until I added the Arikayce, but I have not had side effects besides that. They could be from a combination of the meds.
Have you been on treatment, and how has it gone? If you are on the fence about it, and your doctor is recommending it, just know that there are options. A MWF protocol is more for those without cavitary disease and is very doable. Many also do fine on the 7 days a week. Have a doctor whom you can talk to and express concerns to about your treatment. I would not go against his or her advice because as we debate and delay, this bug occupies our lungs and does damage. Nobody wants to be on these meds, but the protocols are so much better than they were even a few years ago. The Rifampin was the rough one, and many doctors no longer use that. Try to go to a center of excellence to begin with. Then your doctor can work together with them to get you treated in the most suitable way for your case. Once on the meds and doing proper lung hygiene and clearance, you will see improvements. There is so much we can do to increase our success rates. Try not to let fear hold you back. We have all been there.