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Ethambutol - side effects

Posted by atlantabec @atlantabec, Jan 25, 2025

On day 3 of ethambutol (just starting treatment for first time), and I'm having headaches for first time. I don't get headaches, but it's hard to know what it's from or if it's related. Anyone else experience this?

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mollyfoxalden123 | @mollyfoxalden123 | Jun 12 5:47am
In reply to @kypowell11 "I have MAC and I have been prescribed Azythro, Rifampin, and Ethambutol. The dosages seems so..." + (show)
Profile picture for kypowell11 @kypowell11

I have MAC and I have been prescribed Azythro, Rifampin, and Ethambutol. The dosages seems so high, and this is daily (I see others taking this 3 times a week).

Azithromycin - 500mg per day
Ethambutol - 1200mg per day
Rifampin - 600mg per day

Is anyone's treatment amounts similar? So far I am only taking Azythro, I am getting a 2nd opinion tomorrow on this treatment regimen. If anyone has a similar treatment, how did you feel taking all of these on a consistent basis? Still able to work, travel, etc?

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@kypowell11 my doses are the same ..everyday and I started them altogether 2 days ago

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mollyfoxalden123 | @mollyfoxalden123 | Jun 12 7:28am

Me …day two of treatment.Also have headaches which I dont get normaly

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texaseve | @texaseve | Jun 13 10:29am

The antibiotics bother my head some, however, the humidity on the east coast is what is really making my headaches bad. We have to run AC and a dehumidifier for me. NC was the worst place for my head. I do take migraine meds when necessary. I've been on Ethambutol with the Azith and Rif for a year; so far, so good. Had eyes checked a month ago after a year and only a slight change. The only way I can tolerate them is taking 2 (Rif & Azith) on one day the Ethambutol the next. My MAC is going away.

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dantur | @dantur | Jun 13 2:26pm

Prendono le stesse dosi dei 3 farmaci tutti i giorni a stomaco vuoto da circa un mese e mezzo. Nessun effetto collaterale importante se non all’inizio qualche crampo all’intestato latino, poi il mio corpo si è abituato. Faccio tutti i controlli per monitorare gli effetti tossici della terapia e per il momento tutto ok. Purtroppo è tropo presto per capire se stanno funzionando. Penso che saprò qualcosa tra un paio di mesi, quando mi faranno ripetere la broncoscopia o la tac. Ho un’infezione importante da Micobacteryum Chimerae.

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val2652 | @val2652 | Jun 16 5:58am
In reply to @ka1974 "I have bronchiectasis and Mac. I've been on Ethambutol, Azithromycin, and Rifampin (Monday, Wed, Friday) for..." + (show)
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I have bronchiectasis and Mac. I've been on Ethambutol, Azithromycin, and Rifampin (Monday, Wed, Friday) for 5 months, so at least 13 more months to go. I do sometimes get a little headache, but nothing big. My biggest complaint is lower abdominal cramps, not every medicine day, but at least one day a week. My Infectious Disease doctor says she hasn't ever had that complaint, which really surprised me since it's a side effect listed on the RX description.
Hope your headaches ease up!

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@ka1974 yes I had a constant not quite a headache ache. Always on the verge but never full blown headache. Tolerable once I accepted it.

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ronneee | @ronneee | Jun 17 1:03pm
In reply to @mollyfoxalden123 "@kypowell11 my doses are the same ..everyday and I started them altogether 2 days ago" + (show)
Profile picture for mollyfoxalden123 @mollyfoxalden123

@kypowell11 my doses are the same ..everyday and I started them altogether 2 days ago

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@mollyfoxalden123 I started with those doses with a Pulmonologist I no longer see. I could not tolerate and got very ill and stopped taking all three. Finally changed doctors after 6 months. Now on Rifampin 600 3 days a week and azithromycin 250 plus ethambutol 800 7 days a week. Couldn't tolerate Rifampin 7 days. Trying that for 3 days a week now. Just started that this week after a one week break. Doctor can adjust doses if need be. Let them know if you experience any problems.

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ronneee | @ronneee | Jun 17 1:05pm
In reply to @ronneee "@mollyfoxalden123 I started with those doses with a Pulmonologist I no longer see. I could not..." + (show)
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@mollyfoxalden123 I started with those doses with a Pulmonologist I no longer see. I could not tolerate and got very ill and stopped taking all three. Finally changed doctors after 6 months. Now on Rifampin 600 3 days a week and azithromycin 250 plus ethambutol 800 7 days a week. Couldn't tolerate Rifampin 7 days. Trying that for 3 days a week now. Just started that this week after a one week break. Doctor can adjust doses if need be. Let them know if you experience any problems.

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@ronneee correction....am taking Rifampin 450 mg. NOT 600.

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cousteau1827 | @cousteau1827 | Jun 17 3:14pm

I couldn’t tolerate 2 of the 3 meds. Ethambutol made my eyesite very blurry, and Ripabutin gave me severe body aches much worse then a flu….
Not sure if staying on the one med is doing anything? Will see my ID doctor today.

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mollyfoxalden123 | @mollyfoxalden123 | Jun 18 3:31am
In reply to @ronneee "@mollyfoxalden123 I started with those doses with a Pulmonologist I no longer see. I could not..." + (show)
Profile picture for ronneee @ronneee

@mollyfoxalden123 I started with those doses with a Pulmonologist I no longer see. I could not tolerate and got very ill and stopped taking all three. Finally changed doctors after 6 months. Now on Rifampin 600 3 days a week and azithromycin 250 plus ethambutol 800 7 days a week. Couldn't tolerate Rifampin 7 days. Trying that for 3 days a week now. Just started that this week after a one week break. Doctor can adjust doses if need be. Let them know if you experience any problems.

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@ronneee thank you for the info.
I have only done 8 days of the three so Its too early to predict to tolerance.

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mollyfoxalden123 | @mollyfoxalden123 | Jun 18 3:35am
In reply to @val2652 "@ka1974 yes I had a constant not quite a headache ache. Always on the verge but..." + (show)
Profile picture for val2652 @val2652

@ka1974 yes I had a constant not quite a headache ache. Always on the verge but never full blown headache. Tolerable once I accepted it.

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@val2652 I notice a slight headache within 15 minutes of (I think ) taking the Ethambutol.

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