Stopped Ethambutol due to blurry vision....options for other meds?

Posted by mch (Marycarol) @mch, Apr 3, 2023

I just started on the Big 3 the beginning of March. All was going well for about 3 wks. Then my vision became blurry. Went to my eye doc who did thorough exam of optic nerve which showed no issues, however she did concur the blurriness was real....appeared my prescription for distance had changed, but she described it as a minor change and too soon to say it was not just eye fatigue (my guess as I had not slept well for several days and was spending a lot of time staring at computer screen). But now it's been about 10 days since the eye exam and eyes still blurry. So I stopped the ethambutol 2 days ago. Haven't communicated with my Pulmonologist yet. Wondering if anyone has had experience with outcome if only taking Azithromycin and Rifampin? What alternatives to ethambutol have been prescribed and how are side effects?

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Sue, Volunteer Mentor | @sueinmn | Apr 3, 2023

@mch I believe that some people continue their treatment without the rifampin. It is very important to communicate with your Pulmonologist & eye doctor about the continued blurriness. Also, I have had increasing "dry eye" ever since MAC, which my ophthalmologist attributed to the inflammatory response of my body to MAC. So now I use dry eye lubricant throughout the day instead of just at bedtime.
Sue

m77 | @m77 | Apr 4, 2023

I just started on the meds on 4-1-23, when I first took the Ethambutol I thought my vision got slight blurry for 10-15 mins. then seemed ok, a few days before I thought my Dry eye was acting up, I have a eye appt. this wk. let you know.
MLC

lauraadam2425 | @lauraadam2425 | Apr 4, 2023

I have been on the big 3 since Aug 2022 and last month I failed my second vision field test so my eye specialist took me off Ethambutol immediately but the next day my Infectious Disesse Dr concurred. Your Dr's should know if you stop taking one of the antibiotics as it could effect how well the remaining ones work or if they can substitute another one for the one that was stopped. I hope your eyesight returns to normal soon, good luck.

dulwich | @dulwich | Apr 4, 2023

Clofazimine can be used as a third drug

msk | @msk | Apr 5, 2023

In reply to @dulwich "Clofazimine can be used as a third drug" + (show)

I was just at njh and they stopped rifampin due to muscle pains and replaced it with clofazimine. If you read the side effects you don’t want to take it. Has anyone had serious side effects. What about the skin color changing. Any info would help. Miriam

lili56 | @lili56 | May 20, 2023

Hello,
I started the treatment for MAC and bronchiectasis a month ago. Then it had to be stopped because of my liver function tests. I resumed the treatment, I take azihromycin 500 mg, rifambutin 300mg (pee is rusty/redish) - my sensitivity tests showed MAC was less sensitive to ethambutol than rifabutin, and 3x a week amykacin infusion. Well after the infusion I feel very tired and weak the same day. With rifabutin- I have trouble sleeping and I have sweats. I asked my family doctor about it and she said it was MAC but I think it is from rifabutin, because I did not have these symptoms during the time off from the meds. Anybody can share info about side effects of the meds and how to deal with them.

dorma | @dorma | May 24, 2023

I would also like to know more about the meds affecting the eyes. Mine are very "irritated" all the time, and sometimes feel like the inside of my eyelids are a little raw. Eye specialist says my eye HEALTH is good, but this is a little scary. My vision is worse, but off and on. I have very deep itching; sometimes painful.

lili56 | @lili56 | May 24, 2023

Instead of ethambutol I was given rifabutin which started affecting my liver. I do not know what your doctor is going to give you instead of ethambutol but I would not stop any of the three on my own. Definitely ask the eye doctor to communicate with the ID doctor regarding your issues. Good luck with the meds;

lili56 | @lili56 | May 24, 2023

If you were/are taking Azithromycin, do you have sore throat, that burning sensation in the throat plus dryness in the mouth? If you experience this, how do you deal with this side effect?

formergardener | @formergardener | May 25, 2023

In reply to @msk "I was just at njh and they stopped rifampin due to muscle pains and replaced it..." + (show)

Miriam, I took Clofazimine by itself as part of a clinical trial. It was 200 mg a day for 4 months and then 100 mg a day for 2 months. This is a higher dose than is used in combination with other meds, as they are planning for you.

My skin took on a slight bronzing appearance, as though I had been in the sun. It did become very dry, and I had to constantly moisturize.

I took very good probiotics and a high quality colostrum powder every morning and took the Clofazimine with supper each night. I never had nausea or frank diarrhea, although my stools wer not quite as firm as usual, and I did have more frequent bowel movements.

It can lower your potassium levels, so you need to up them with your diet.

I have been off of the Clofazimine for 2 months, and my skin discoloration is slowly and almost imperceptibly returning to normal. I have been on a three times a week regimin since then of Ethambutol and Azithromycin, taking them all at the same time right before bed, as my doctor suggested. I have not had any stomach issues.

Studies show that, when Clofazimine is combined with other drugs, it is very effective and can even reduce the duration of treatment. It has to do with it facilitating entry of the other meds into the cell wall. Don’t be afraid of it. I don’t think you will be taking the high dose I was on. My doctor told me that it is remarkably well tolerated.