TOBI~28 on~28 off

M

MOME2RT

New member
Okay...this may sound like a silly question OR one for Reeces' doctor, BUT I thought I'd ask here first.

Reece is due for his next TOBI treatment Sept. 4th. Do I go ahead & get it refilled by that date & start it...OR do I call the doctor & ask first. This is the first time I have had to refill on a regular basis......Reece has been on it 2 other times but not 28 days on~28 days off....due to hosptial visits in between thus he was on IV's instead.

Thanks for the input......<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
The first few months DS was on tobi, we were like you and asked. Then his doctor told us that he'd prefer DS be on it for several months -- think it was 6 and so one or two clear cultures. For piece of mind, give the doctor a call. L
 
K

kandi

New member
Just a quick question. What is the longest anyone has been on a routine of tobi 28 on and 28 off. My son has been on it for about 8 to 9 months since testing positive for pseudomonas (?) and msra through a bronchostomy(?) ( can't spell). We go back in Sept for his next apt and was going to ask how long we expect to be on it seems a little long to be on this medicine compared to what I have had others say.
 
L

LouLou

New member
Kandi, I'm on it every other month until there is something better drug wise or until I'm resistant. I've been on it like this since I was 19. I will be 28 on Sept. 11.
 
R

Ratatosk

Administrator
Staff member
When DS first cultured it his doctor wanted him on it for 6 months, provided he had two clear cultures. His other clinic told us that they wanted him on it for a year even if he had clear cultures.
 
You must log in or register to reply here.
Top