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Big 3 all at same time?

MAC & Bronchiectasis | Last Active: Aug 1 4:34pm | Replies (39)

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I started at 55kg in weight. Three x per week. Same dose you are starting on. I rang my doctor worried about the 1600 of ethambutol. I don’t think she liked me questioning the amount and in the end said 1200 would be okay. I felt bad questioning her and so I just stuck with the 1600. 4 hours after first dose I had toes burning and tingling but didn’t worry, the third day I had pain in one foot and I could hardly walk on it. then started to get pains in other areas. The more I took the ethambutol the more intense the tingling and burning felt leading to the foot feeling like it was buzzing or vibrating. I rang to report my symptoms but Nobody got back to me. I tried quite a few times to get through to them. Left messages but still no calls back so I thought well maybe it’s not urgent that’s why they’re not calling and I just kept taking the MEDS when I went to get my next prescription. The pharmacist told me to keep on at the Doctors. So, I did and they finally got back to me 18 days later and changed the med to Clofazimine. now taking MEDS in my fifth month, I still have a numb big toe and mild neuropathy in feet and hands. This is supposedly very rare to get neuropathy at the very start of treatment so they say and suggest now that something else might be going on but I know I never had those symptoms before taking these meds. I’m a bit put off by the suggestion. we are all different. Don’t let this scare you though, This might not happen to you just make sure you report side effects immediately. I also only took ethambutol and Azithromycin for the first week and then introduced rifampicin a week later. I take Azithromycin and Rifampicin before b’fast with a full glass of water then Clofazimine with b’fast 2 hours later! Best of luck to you! Many tolerate the meds and you could be one of them.

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Replies to "I started at 55kg in weight. Three x per week. Same dose you are starting on...."

I'm so sorry you had such a frustrating experience with your doc on top of the very worrisome neuropathy! I'm glad it's going better now. My pulmonary doc called me back this morning after I asked the question yesterday afternoon. He said the slightly higher dose of ethambutol (E)--at 1600 mg/day 3X/week, which is just under 30 mg/kg instead of 25mg/kg-- has a better treatment outcome than the lower dose. In his experience the optical side effects are very rare. He said it was up to me, whether or not to lower the dosage. But once I understood his rationale, I chose to go with his recommendation. Hang in there!