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Starting Ethambutol

Posted by healthybon @healthybon, Jul 25, 2023

Hi Everyone,
I am starting Azithromycin and Ethambutol…this is what Dr Swenson is having me do.
My question is as follows, to those of you who are taking Ethambutol.

I had my eyes checked by my Opthomologist…per Dr Swenson. A baseline was noted for certain things, and I am to have my eyes checked every three months. One of the side effects could be ocular toxicity/blindness. Dr Swenson said that is why every three months and/or if I notice the slightest unusual thing going on with my eyes I am to stop the medicine. I assume that all of you who take this drug were instructed similarly to me.
How do you feel about this, what is your opinion etc etc. Please respond. I’m not sure how to think of this…thanks.

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dorma | @dorma | Jul 30, 2023

Gee whiz...so many things to think about, and sometimes fret about. I've been on the THREE for 12 months. My eyes frustrate me a LOT, and I've lost more of my hearing. But I stuck it out for a year. I just recently changed lung doctors; waiting on him now...so I'm not sure what my next step is. I really want to stop the meds though. I realize I need another CT of my chest, and probably another bronchoscopy, which I dread, so I really have no idea what shape my lungs are in now. I was diagnosed when they were looking for something else, and found the nodules in my lungs in March of 2022. I greatly appreciate this site; have learned so much more than my first lung doctor was telling me!

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lauraadam2425 | @lauraadam2425 | Jul 31, 2023
In reply to @healthybon "What did your dr replace the ethambutol with?" + (show)
@healthybon

What did your dr replace the ethambutol with?

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He is waiting for my last 3 sputim tests to come back as I have been on the meds for a year next month and may add or change the meds when I see him in 2 weeks. Will let you know.

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1 reply
healthybon | @healthybon | Jul 31, 2023
In reply to @lauraadam2425 "He is waiting for my last 3 sputim tests to come back as I have been..." + (show)
@lauraadam2425

He is waiting for my last 3 sputim tests to come back as I have been on the meds for a year next month and may add or change the meds when I see him in 2 weeks. Will let you know.

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Thanks

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Renee | @rchildress | Sep 5, 2023
In reply to @healthybon "hi there is your mac reading improving from just taking the azithromycin?" + (show)
@healthybon

hi there is your mac reading improving from just taking the azithromycin?

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I haven’t had any tests but I am getting another CT on Sept 13th and go from there. I went to a ID doctor in OKC and she had the same concerns as everyone about taking only Azithromycin. I agreed to stop taking it after the CT and see if my symptoms returned by the time I see her again on
Oct 3. I haven’t decided whether to take all three antibiotics or not. She said I could do whatever I choose and she would continue to prescribe Azithromycin if I choose that alone but she doesn’t suggest I do that. I really don’t have bad symptoms. I have night sweats, slight dry cough, and fatigue but since I started the Azithromycin all the symptoms has lessened. I am still taking everything I can to build my immune system and from these posts I am fixing to start garlic pills rather than eat it everyday.
I am still worried about my eyes. She said an eye test every month and my eye doctor said an extensive test monthly and medicare might not pay for it. He is concerned about my eyes.
All that is making me shy away from the other 2 antibiotics. I will know more after 2 weeks off Azithromycin.
I am leaning toward no additional antibiotics.

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2 replies
healthybon | @healthybon | Sep 5, 2023
In reply to @rchildress "I haven’t had any tests but I am getting another CT on Sept 13th and go..." + (show)
@rchildress

I haven’t had any tests but I am getting another CT on Sept 13th and go from there. I went to a ID doctor in OKC and she had the same concerns as everyone about taking only Azithromycin. I agreed to stop taking it after the CT and see if my symptoms returned by the time I see her again on
Oct 3. I haven’t decided whether to take all three antibiotics or not. She said I could do whatever I choose and she would continue to prescribe Azithromycin if I choose that alone but she doesn’t suggest I do that. I really don’t have bad symptoms. I have night sweats, slight dry cough, and fatigue but since I started the Azithromycin all the symptoms has lessened. I am still taking everything I can to build my immune system and from these posts I am fixing to start garlic pills rather than eat it everyday.
I am still worried about my eyes. She said an eye test every month and my eye doctor said an extensive test monthly and medicare might not pay for it. He is concerned about my eyes.
All that is making me shy away from the other 2 antibiotics. I will know more after 2 weeks off Azithromycin.
I am leaning toward no additional antibiotics.

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I was getting my eyes checked monthly when I was on the ethambutol....my dr suggested every three months, but I was scared to death to wait that long. I had no peace. Now that I am off the meds, no more monthly eye checks. the tinnitus from the azithromycin seems to be waning some.....I hope it goes away totally in time. i don't like it at all. some people don't get any side effects...it's such an individual journey, yet the same in many ways.....????

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Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 5, 2023
In reply to @rchildress "I haven’t had any tests but I am getting another CT on Sept 13th and go..." + (show)
@rchildress

I haven’t had any tests but I am getting another CT on Sept 13th and go from there. I went to a ID doctor in OKC and she had the same concerns as everyone about taking only Azithromycin. I agreed to stop taking it after the CT and see if my symptoms returned by the time I see her again on
Oct 3. I haven’t decided whether to take all three antibiotics or not. She said I could do whatever I choose and she would continue to prescribe Azithromycin if I choose that alone but she doesn’t suggest I do that. I really don’t have bad symptoms. I have night sweats, slight dry cough, and fatigue but since I started the Azithromycin all the symptoms has lessened. I am still taking everything I can to build my immune system and from these posts I am fixing to start garlic pills rather than eat it everyday.
I am still worried about my eyes. She said an eye test every month and my eye doctor said an extensive test monthly and medicare might not pay for it. He is concerned about my eyes.
All that is making me shy away from the other 2 antibiotics. I will know more after 2 weeks off Azithromycin.
I am leaning toward no additional antibiotics.

Jump to this post

Talk to your ophthalmologist about Medicare paying - they have to code it a certain way that indicates it is necessary due to a medical condition and the drugs you are taking. My eyes were tested every 3 months for 2 years with no issue.
Sue

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