Eye problems with antibiotic treatment for MAC?

Posted by joan912 @joan912, Apr 9, 2017

My husband just started the three-antibiotics therapy for MAC. One of the potential side effects is problems with vision and the eye, especially for people who have pre-existing eye problens. Has anyone experienced that? Do you go to the ophthalmologist regularly during therapy?

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Joan, Several members have mentioned the importance of regular eye checks in the main MAC discussion. I highly recommend reading through it, getting to know the other members and soaking up the wealth of information here:

– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M

I’m also tagging @katemn @chinasmom @shiell @lindam272 and @jillnc to bring them into this discussion and to share their experiences with MAC, eye monitoring and potential issues. There was also mention of an app that some members use.

Joan, do you have pre-exiting eye problems?

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@colleenyoung

Joan, Several members have mentioned the importance of regular eye checks in the main MAC discussion. I highly recommend reading through it, getting to know the other members and soaking up the wealth of information here:

– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M

I’m also tagging @katemn @chinasmom @shiell @lindam272 and @jillnc to bring them into this discussion and to share their experiences with MAC, eye monitoring and potential issues. There was also mention of an app that some members use.

Joan, do you have pre-exiting eye problems?

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My husband does. He has a major cataract in one eye and retinal problems in both. I am writing on behalf of him, trying to be his advocate. Thank you for your response.

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@colleenyoung

Joan, Several members have mentioned the importance of regular eye checks in the main MAC discussion. I highly recommend reading through it, getting to know the other members and soaking up the wealth of information here:

– (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS http://mayocl.in/2cwX36M

I’m also tagging @katemn @chinasmom @shiell @lindam272 and @jillnc to bring them into this discussion and to share their experiences with MAC, eye monitoring and potential issues. There was also mention of an app that some members use.

Joan, do you have pre-exiting eye problems?

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Joan, I began the meds in December. I don’t have any preexisting eye conditions although I know I will need cataract surgery at some point, just not there yet. I had a baseline eye exam with my opthalmologist and go every 6 weeks for a check up. My eye dr. suggested that I download an app on my phone to check my visual acuity and to check for color blindness weekly, which I do. There are a few apps so you can just pick one. I just typed in “visual acuity app” and a few came up. The Ethambutol can attack the optic nerve. That’s why it’s important to keep on top of it. Katherine, our mentor in this group, also mentioned that she realized when her colorblindness began when she had trouble reading the green street signs or highway signs and her husband was reading them just fine. That was her first indication that she was having a problem. If I remember correctly, now that she is off the meds, her vision is restored. Sometimes it comes back, sometimes it doesn’t. That’s why you have to be diligent. Eyes and hearing. I also see an audiologist every couple of months to have my hearing checked as the azithromycin can effect your hearing. Best to you and your husband. We are here if you need anything! Linda M.

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@joan912 Joan, you will see in our past pages of our Main Mac pages .. but I will repeat here from my File Cabinet for you the recommended. As you have time I strongly suggest you read through those Main MAC pages .. you will learn SO much .. AND many of your concerns and anxieties will be greatly relieved .. BECAUSE you will have good answers! Knowledge IS Power!

I personally caught the vision issues very early with Ethambutol by an excellent Ophthalmologist .. was taken off and my color as well as distance vision returned within a year. It is just important to be vigilant. When I was on the antibiotics .. smart phone apps were not available .. technology is GREAT .. go for it!

TESTING-baseline and periodic p 1. Ethambutol – color vision and visual acuity: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
2. Azithromycin – hearing and balance: GET BASELINE PRIOR TO STARTING .. THEN QUARTERLY
3. Rifampin – CBD (blood counts), liver and kidney function tests: GET BASELINE PRIOR TO STARTING .. THEN MONTHLY

OR TESTING:
BASELINE: HEARING AND VISION (Vision: Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

MONTHLY: BLOOD COUNTS, LIVER AND KIDNEY FUNCTION TESTS, SPUTUM CULTURES
QUARTERLY: HEARING and VISION
NOTE: Ethambutol – color vision and visual acuity – monthly ( Additional testing for eyes are use of the “eye chart” with letters read at 20 feet, and a red-green color book to distinguish changes in the ability to visualize colors.)

**** Lab tests:
CBC- Complete Blood Count (CBC)
ALT- Alanine Aminotransferase (ALT) LIVER
alk phosphatase- Alkaline Phosphatase – LIVER
serum creatinine-. Creatinine and Creatinine Clearance-SERUM CREATININE – KIDNEY

TESTING RECOMMENDED FOR VITAMIN LEVELS 1. Ask for your VD-3 level to be checked .. they can get too low. Speak to your Doctor first .. but I took: NATURE MADE brand 5,000 IU of Vitamin D-3 (NOT VD) *From our member @tdrell Terri, my Primary Dr at NJH doubled the VD I take to 4000 units a day… my lab test showed I was at 50 and she said she likes to see it at 100.
2. Ask for your B-12 level to be checked .. they can get too low
3. Personally I always purchase the brand Nature Made vitamins for it’s quality .. ‘ Nature Made is the first brand to earn the USP Verified Mark on one of its products, an independent certification for quality and purity.’

TESTING-AFTER ANTIBIOTIC TREATMENT ENDS I can ONLY speak for myself about what testing is correct after going off antibiotic treatment. Personally I had quarterly check ups with my doctor including sputum cultures initially .. then as he put the ‘puzzle’ together based on the results of the sputum culture/Xray/Pulmunary Testing ..deciding when to go to semi annual .. then to annual .. sometimes then back to semi annual. It is ALL up to your GOOD Infectious Disease doctor who is KNOWLEDGEABLE about MAC. But it is my understanding there SHOULD be follow up check ups to CONFIRM that the MAC in your lungs is STILL negative/NOT colonizing. Without CONTINUING checkups (I expect for my life time) we have NO idea if the MAC is colonizing .. OR IF we are still negative! Those nasty critters DON’T disappear .. just lie there in waiting .. that is why it is so important to take good care of ourselves .. eat healthy .. exercise .. stay positive .. be serene! Hope this is helpful. Katherine

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12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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@cmcclure

12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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@cmcclure…You have had a frightening journey with so many diagnoses. I'm assuming VA means Veteran's Admin. Hospital and you are stuck with the care they provide. If it is permissible and you can afford it, I would suggest a comprehensive exam at Mayo or Denver's national Jewish hospital. There may be another specialty hospital studying TB that can help you sort things out. As for blurry vision, my infectious disease DR insisted on monthly eye exams with a specialist while I took ethambutal in case I got blurry vision or color blindness. Some ethambutal patients develop blindness, so it is time for you to get second opinions. You are in our thoughts. Getting angry at the care you have been given is a great motivator for seeking new doctors.We wish you better times ahead.

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@cmcclure

12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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@mcclure Ethambutol can cause blindness in some people. Ask to have that med switched to something different. You told me your age in a pm. I believe you are too young for them to chock it up to old age. You are more than a few years younger than me, and I am young. (60) 😊

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@cmcclure

12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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Thank yoiu

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@cmcclure

12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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Hi, so sorry to hear all you're going through..I was on the triple drug combo for over 2 years…at the end I was losing my vision. It started with blurriness and progressed to pulsating blind spots. I could watch a bird in flight..see it…lose it..and see it again. That sort of thing. Regular eye Dr. checked optic nerve…said everything looks normal..was not normal!! I stopped taking the drugs.. Went to another eye Dr. at UAB Eye Hospital..she at least listened to me and sent me to a Neuro-Ophthalmologist. After more testing that could not SHOW that is was due to the drug…she told me it was most likely the drug. That was enough for me. Bottom line…these are harsh drugs and hard to take for long periods. You have to be the one to say I cant take these anymore!!!! Thankfully my vision has come back to generally what a 67 yr. old woman would have…so we're OK..

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@gaylewroc

Hi, so sorry to hear all you're going through..I was on the triple drug combo for over 2 years…at the end I was losing my vision. It started with blurriness and progressed to pulsating blind spots. I could watch a bird in flight..see it…lose it..and see it again. That sort of thing. Regular eye Dr. checked optic nerve…said everything looks normal..was not normal!! I stopped taking the drugs.. Went to another eye Dr. at UAB Eye Hospital..she at least listened to me and sent me to a Neuro-Ophthalmologist. After more testing that could not SHOW that is was due to the drug…she told me it was most likely the drug. That was enough for me. Bottom line…these are harsh drugs and hard to take for long periods. You have to be the one to say I cant take these anymore!!!! Thankfully my vision has come back to generally what a 67 yr. old woman would have…so we're OK..

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@cmcclure

12/2017 my eyes were great fantastic now year later taking the big three for 14 months now I have shitty blurred vision and eye doctor examined me and said it is just old age you need glasses ( this is at the same VA that took three plus months to dx the MAC. during that time stomach pain was caused dialtion of aorta and needed open heart surgery for ascending aorta- there was nothing wrong with me it was in my head which I accepted- after digital exam i was told i had syphilis, gonorrhea and cellulitis my GF loved that one- put in isolation due to Hemoptysis,200ml one cough told I just had pneumonia and AFB was neg then frantic call to me at 8 am pronto time three weeks later told hey you got TB and by the way probably HIV GF loved that one too . So yeah im picking bones
WTH soooooooooooooooo need info to confirm blurry vision caused by drugs Mac TB and additional special testing to confirm it not JUST aging but connected to use of drugs and or infection itself. i have the regular ethambutol stuff and some ramfipin but i need something real juicy like there is no definitive testing that 100% confirms nor denies injury to the eyes. also if people are going to court to prove they got this outside their home i just set president at hearing in August that yeah it passed thru the environment from one patient to another. so to recap looking for support for manifestations of eye irregularities causes by TB and or its treatment. Thank you all signed dude whos name starts with licensed Dr. and ends with licensed nurse…..

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I also started having pulsing vision disturbances in the upper left area of my left eye. My infectious disease doctor said it was definitely from the Ethambutol and my eye doctor said it wasn't. I was taken off the Ethambutol and my vision did come back slowly after about two months.

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I am looking for anyone who have experienced "second cataracts" a couple of years after the original cataracts removed. The doctor wants to use laser to deal with them but I am concerned because I have already had a detached retina repair done on one eye after laser was used to reduce pressure as I also have suspect glaucoma.

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