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NJH communication
Good morning,
I returned from NJH visit last week. It went well- I had multiple tests done, saw dr. Kasperbauer and Dr. Griffith and had ethambutol added to my regime and finished my 8-day visit after 5 days (was surprised and had to change the plane ticket) And here there is a problem- Dr. K. sent ethambutol prescription to the pharmacy which I picked up- is says take 2 pills 400 mg once a day; on my last day Dr. G. clearly stated he wants me to take 3 pills 400 mg each three times a week. Now I am trying to reach to any of them to decide how I should take it. I did call the Infectious disease unit, left a message there for a nurse, e-mailed Dr. G. - still no answer. Does anyone know the best way to communicate with a nurse or a doctor as what I do does not work. I am frustrated that the communication is so bad. Thank you
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I always send a message through MyChart. I personally have never heard of anyone taking 3 pills of Ethambutol (only 2 of 400 mg each per day) and I am in several different support groups.
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1 ReactionYes, NJH communications can be very poor. I have all prescriptions transferred to my local pulminologist asap.
There may be different dosages for daily use or MWF. Ethambutol is dosed by weight. It could be 2 for under a certain weight and 3 for over a certain weight with something in between. The Dr may prescribe 3 per day for 60 days and then back to 2 per day. My last prescription was for 3 per day, which of course adds 50% to the cost.
"Pulmonary M. Avium Complex (MAC) without HIV (Off-label)
25 mg/kg PO qD; after 60 d, decrease to 15 mg/kg PO qD"
https://reference.medscape.com/drug/myambutol-ethambutol-342677
I take 3 tablets of 400 mg each when I take Ethambutol.
I was taking 3 Ethambutol 3 x week and it was just upped by another 200 mg. so a total of 1400 3 times a week. The dr. I go to said it's weight based and since I gained weight they adjusted my dose. I am only on Azithromycin, 500 mg. and the Ethambutol 1400 mg. at the time. I had to stop Levofloxacin because I had severe joint pain and tingly toes. I was on that for 8 months and my last sputum was negative. I started treatment December of 23, hoping to be done with this by June. Can your pharmacy try to get in touch with your doctor if you are having trouble confirming dosing with your Dr.? I was told that the dosing if very important.
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1 ReactionI don't hear tingly toes very often if at all. I've had tingly toes for a year from voriconazole. I did find a paper describing this side effect.
Thank you for your response; Dr. Griffith said it would cause less side effects than two tablets 400 mg every day- I weigh 102 pounds- I just started yesterday and will see how it goes together with azithromycin 500 mg and clofazimine 100 mg, both once a day. I was told at NJH that my regime is too weak. So from the posts I see that the 1200 mg dose once a day three days a week is possible. And Dr. G. called me confirming the 3 tablet dose.
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2 ReactionsGlad you got that straightened out! If you are not clear after 6 months, they can add the nebulized liposomal Arikayce. It is a game changer. Patients quickly often convert when it is added. They are supposed to soon approve it as a first line therapy, combined with the other meds. It will help people convert sooner. Good luck to you. I take all my meds on an empty stomach before bed. In the mornings, I take all kinds of probiotics on an empty stomach. This has worked well for me.
hello,
do you notice any side effects of ethambutol?
No side effects, I think. I have my eyes checked every three months, just in case. The ophthalmologist does a very thorough check. The other week, zi felt that my vision was not as clear, but all the tests she did came out completely normal. She said to see the optometrist to see if my prescription changed, but it happened within just a few weeks.
Hi- You mentioned you are in 3 different support groups.
Would you share the support group info.
I am sure that it is a great deal of help for many reasons.