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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21, 2024 | Replies (9354)Comment receiving replies
Imee, you need to hear me! This is VERY important .. now I do NOT want to alarm you .. MANY people do just fine on Ethambutol .. BUT ASAP .. I want you to make an appointment with a GOOD Ophthalmologist. I want you to tell them: I am on an antibiotic call Ethambutol. I want to get a BASELINE Vision Test.
THEN request a COPY of that Baseline Vision Test .. FOR YOUR OWN MEDICAL FILES!!
What I have read for recommended testing:
RECOMMENDED TESTING:
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
Then as you know .. I am BIG on Due Diligence. I don't mean to alarm you since many people do just fine on Ethambutol .. but after four months on Ethambutol I was in a car .. noticed I could not read the green road interstate signs the same way my husband could .. timing etc. I immediately got an emergency appointment with a Cleveland Clinic Ophthalmologist who did incredibly detailed testing of my eyes. Took me off Ethambutol .. within a year my long distance and color vision return 100% .. BUT I caught it very early. NOW .. Ethambutol is a VERY good antibiotic that is tolerated just fine by MANY people .. so do NOT get weirded out!! Just be watchful of any changes in your eye sight .. get that baseline eye report .. AND be aware of any vision changes. That is a part of our Due Diligence .. not to get crazy .. but to just be watchful. Sending you a hug! Katherine
Ethambutol 800mg (vision loss 02/12)
Replies to "Imee, you need to hear me! This is VERY important .. now I do NOT want..."
Nope, I meant Irene! If/when you do decide to go back on the antibiotics .. AND you have Infectious Disease Doctors you trust .. make SURE you go on one antibiotic at a time .. preferably at least a week apart .. so your body can adjust .. and you can see which one is causing which side effect. I also lost 18% of my body weight but kept to it and was glad I did because now I have been stable since May 2014. Great that you have been reading past pages of the Forum .. good info on how to handle the side effects etc. Good luck to you Irene .. keep us posted! Hugs! Katherine
Thanks katherine, I did an eye examination during the time that im taking ethambutol my doctor prescribed eye supplements. I already had blurry vision before taking ethambutol. I also requested for labtest to check if my liver is ok. So far the results were ok. Im taking 1 gloves of garlic with honey while waiting for my culture test. I read it online that garlic has an antibacterial compound called allicin and honey has antiba terial and anti inflammatory. I make sure drink enough water and green tea everyday. Im not sure if this will help. I also take multivitamins to strenghten my immune system. I will request for the lab test which you mentioned on my next appoinmeng. Thanks again.
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Yes, I did have the vision test. I am not on anything right now as I had such horrible side effects, When you drop to seventy seven pounds that's a big deal! I have had very caring and wonderful pulmonologists and infectious disease doctors. I will be revisiting the medication situation soon as I have no quality of life. I have gone from the ever ready bunny to the lethargic tortoise. I have learned several things from this forum which have been helpful. Thanks for the hug. Back at ya! Irene (not Imee - I think that is someone else)