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I only use tobi for two weeks at a time myself. I also only use it once a day rather than the recommended twice a day. For some reason when i use it twice the second dose seems to make my chest feel tight. When i use it only once a day it seems much better for me and i avoid the tight feeling i would get with the second dose.
~Diane 39 / cf / diabetes / b.cepacia
OOPS, i forgot to add that, if i am feeling really crappy , i will use it twice a day and for longer than two weeks ( if it is helping).
~Diane 39 / cf / diabetes / b.cepacia
for Diane 39...thank you so much for your reply. Is your doctor in favor of the 2 week regime? It is an interesting concept-glad you have had success with it.
I use tobi for 2 weeks also, once a day as well, for some stupid reason it causes my lungs to bleed. My doctor has always had a hard time believing it but every time I am on it a week later my lungs bleed - I think it just dries me out way too much, and on top of three vest treatments a day and exercise I must irritate the dryness . Has anyone else had bleeding lung with TOBI?
My guy has started having some adverse reactions to the inhaled tobi (ringing in the ears) - so he dropped to one dose/day. Doctor's advice was that he would rather it be twice/day, but if that causes problems, one/day is better than not at all.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>for Diane 39...thank you so much for your reply. Is your doctor in favor of the 2 week regime? It is an interesting concept-glad you have had success with it.<hr></blockquote>
Hi, Yes my doctor says if i can only stand it for 2 weeks on then that is fine. I am on antibiotics all the time usually 3 at a time, and he wants at least two weeks out of the month to have tobi in the combo of 3.
~Diane 39 / cfc / diabetes / b.cepacia
you dont have tobramycin in the uk? i find that hard to believe! maybe you just dont have the brand name 'tobi' there, we dont have it in australia either. just the generic name tobramycin.
nope we dont even have that one either i am waiting for it to be allwoed .its like adeks has only just become available they take a while to come over here . i mean i have only just found a cf clinic that actually cares about cf and wants help peeps with it as i have struggled to find one in the past since becoming an adult patient for yrs ago so i stopped all meds cos no one was really bothered (except my family) and then the start of this year i found one it was amazing they were fantatstic . this forum helps alot as well .
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