tobi for 1 week?

[anonymous]

Our doctor once said it is okay to use tobi for a week or 2. Has anyone ever used tobi for less than the recommended 28 days?

 

[anonymous]

No never, my doctor always told me it had to be taken for 1 month on and 1 month off.

Dave 29 w/cf

 

[kybert]

if its inhaled then i too take it for a month. i dont think a week would have any benefits.

 

[Diane]

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

 

[Diane]

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

 

[anonymous]

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.

 

[anonymous]

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?

Sarah
27 w/cf

 

[anonymous]

I've had it w/ Pulmozyme, do you take it also?

 

[miesl]

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.

 

[Diane]

<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

 

[ORTONSGIRL84]

is tobi any good i am waiting for it to be prescribed over here in the uk as it has not yet been given the go ahead . FROM JO

 

[kybert]

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.

 

[ORTONSGIRL84]

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 .