Discussions
Discussions
What consequences will I be facing?
I'm on my third attempt at taking the big 3 medications. I have decided that I will no longer take them. The side effects are just too much for my body. Since March, I have been sick more days than not (from the medications). Has anyone found themselves in my shoes? If so, what was your plan B? Thanks.
Replies
Hello! I commend you for attempting three times. Some people can tolerate all 3 antibiotics, others cannot and have given up after one attempt . Hopefully, your doctor will be able to discuss alternate plans with you soon.
Hoosier,
Hello! Were you able to set up a call with your doctor?
Comments
Hi Hoosier60.
I am sorry to hear that they have recommended a third round. I like your idea of getting a second opinion on your next steps. NTM-Xenopi is less common as you probably know. Getting a disease-specific specialist in your corner may help. Keep us posted!
Hoosier,
Hello! I don’t know whether or not you have seen the NTM referral list yet? https://gamma.ntminfo.org/united-states-of-america/
MaryC
Those three drugs are a major pain. The only thing that c;eared my MAC infection was inhaled Aricayce. In 2 months my cultures turned neg, No side effects.
Mary,
Thank you for reporting great news on your experience with Arikayse. I am so glad that you converted to a negative culture so quickly.
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