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Ethambutol
I know there has been some threads about Ethambutol. I have been on 1200 mg 3xs a week along with Azithromycin and Rifabutin for the last year and a half.
However, after seeing an eye specialist he got me alittle worried about the toxicity of Ethambutol. I have now been off it 2 weeks now and have to make a decision about whether to go back on it or not. My lungs or my eyes? I feel like I may have to sacrifice one over the other. I am being referred to National Jewish because my last bronchoscopy showed I was refractory(mac still there).
My ID said I could maybe go on clofazamine(?) instead.
Sorry for long winded but has anyone had color blindness or worse with Ethambutol and has anyone been on the Clofazamine(it was a leprosy drug and I think you can only get it at Natl Jewish), Thank you!
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I developed MAC in 2021. I was put on the Big 3. Because of the side effects, I had my blood drawn every month. I had an EKG and saw the eye doctors every month. Do you do these checks as well?
Hi there. I am currently on Clofazimine, Ethambutol and Rifampicin. The Clofazimine has darkened my skin a little but nothing drastic. My respiratory specialist said I look like I’ve been on holiday somewhere sunny (I wish!).
@sueinmn Are you saying that for six months you had to have your vision tested everyday? Daily visits to the ophthalmologist? Optical nerve issues?
@paxmundi 3 times in the first 6 months and no changes were detected, so we went to 6 months and stayed there. Due other (preexisting) conditions I still see the doc twice a year.
@sueinmn Thank you for the clarification.
@petry I am now 83 and 8 months of age.
I was diagnosed with BE in Aug. 2022 and bringing up a green mucus 'glob' every so often. In Oct. 2023 I was finally tested, my sputum finally tested at NJH, and told I had a low load of infection, intercellular,
My infection then and now is a low load and I continue on 'watchful waiting." Meaning I had not and have not started the antibiotics.
I do nebulizing, percussion, postural drainage and the huff cough every day along with doing my best to have a good amount of liquids each day to keep everything lubricated. I also take supplements and try my best to eat well and not cheat too often with 'ice cream' etc.
To date with having seen five pulmonologists previously I had not been sent on to see an ID doctor. However the sixth pulmonologist has me set up to see an infection disease doctor. He also had me start with a speech therapist. Luckily she is fantastic, years of experience and thrilled he referred me. She is helping me with methods to keep the tongue strong, the diaphragm strong etc.
Have they given you other tests to know if you have other health problems that might be contributing to the BE? I went to National Jewish Hospital/Clinic in Oct. 2023 and had a battery of tests to rule out other factors that might be contributing to the BE.. I went to NJH because I felt my my local pulmonologist was not up to snuff with knowing how to handle a person with BE, and due to the fact NJH/Clinic concentrated on respiratory illnesses since the late 1800's, including asthma.
My thoughts...take your time...read as much as you can on this blog, take your time making any decisions about taking the antibiotics until you feel you understand everything.
For me, I am fortunate, I feel well and have not had an exacerbation...no cavitary etc. We are all different, as often said on this site, in terms of how things will or will not make a difference for us. We have to know ourselves, and we know ourselves better than the doctors who don't know us on a daily basis,. We have to do our research and deep thinking, to help make the best decision for ourselves.
Glad you are working on all this for yourself, that's all part of the journey and battle.
Barbara