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@smileygirl47

I have recently been prescribed Azithromyicin to be added back in to the Big 3. Originally I was taking Ethamathrol, Anikacin, Rifibutin and then Azithromyicin and Clofaximine were added. My liver enzymes rapidly elevated so I was taken off of everything. After a short time Ethamathrol and Clofaximine were started and last week Azithromyicin at half dosage (250 mg.) was added. Since adding the Azithromyicin my lab results look good; however I have woken up with a headache every day and it lasts all day long. I have tried taking the "Z" med at night and then mid day, with no difference in the headache. Any suggestions? Also how does one explain this diagnosis to one's friends? I look the same to them but can't do the things I used to do. This is a weird time in my life!!!

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Replies to "I have recently been prescribed Azithromyicin to be added back in to the Big 3. Originally..."

I start by assuring them that the infections being treated are deep in my lungs and totally not contagious to others - in fact, you are more apt to catch some bug from them than they from you. Then I will explain that my lungs are permanently damaged - for causes unknown they don't move air and mucus properly, meaning I may be short of breath and/or fatigued, may get infections that need treatment for a very long time, and that while the infection can be cured or managed, the underlying damage stays with me.

After 4+ years, I always explain that, like diabetes or arthritis, bronchiectasis is just something I live with. That there are "treatments" I do daily to stay healthy (nebbing & airway clearance.) Things I no longer do (hot tubs or indoor water aerobics.) Good days and bad days... As I get older, I find more and more people understand. Sometimes it is a relief to them to be able to also admit to no longer having the energy for some activities, or needing a day off or a nap. Or that they have a persistent but invisible health issue to live with.

Now that there are many people reporting long Covid, an easy way to explain is that like many with long Covid, you look normal, but have "hidden issues." Then, depending on how much detail you want to share, you can explain about the side effects of the meds, or the toll the meds + infection take on your body.

As for the Azithromycin headache, I always took mine at bedtime & after several weeks they began to subside. I found that staying super-hydrated helped. Also, eating something and taking one Tylenol with it helped.

Sue