Pseudo

[thelizardqueen]

Nope - I'm one month on with TOBI, and one month off with no nebs. I haven't done the TOBI thing in about two years, but I think my doc is talking about putting me back on it again for awhile. Oral drugs I only take when I'm sick with an infection, and that's two weeks of Cipro. Sometimes I'll take the Cipro along with TOBI, but haven't for awhile.

 

[thelizardqueen]

Nope - I'm one month on with TOBI, and one month off with no nebs. I haven't done the TOBI thing in about two years, but I think my doc is talking about putting me back on it again for awhile. Oral drugs I only take when I'm sick with an infection, and that's two weeks of Cipro. Sometimes I'll take the Cipro along with TOBI, but haven't for awhile.

 

[Ruby]

Great Liz Thanks,

I'm going to suggest that I change to tobi one month on one month off tomorrow! I love the idea of no nebs at all for a whole month. I figure if I haven't cultured it in over a year I may as well try a different course of action.

 

[Ruby]

Great Liz Thanks,

I'm going to suggest that I change to tobi one month on one month off tomorrow! I love the idea of no nebs at all for a whole month. I figure if I haven't cultured it in over a year I may as well try a different course of action.

 

[thelizardqueen]

With TOBI you have to be careful about building up a resistance. That's where the one month off comes into play. I believe docs like to do this for a year, and then re-evaluate to see if it needs continuation or not.

 

[thelizardqueen]

With TOBI you have to be careful about building up a resistance. That's where the one month off comes into play. I believe docs like to do this for a year, and then re-evaluate to see if it needs continuation or not.

 

[anonymous]

I thought it was one month off of tobi 'cuz it was so tough on your system that your lungs need time to recover. DS is on Tobi every other month, but he still does nebs with atrovent, albuterol (3 x a day) and pulmozyme (once a day) along with CPT every day.

 

[anonymous]

I thought it was one month off of tobi 'cuz it was so tough on your system that your lungs need time to recover. DS is on Tobi every other month, but he still does nebs with atrovent, albuterol (3 x a day) and pulmozyme (once a day) along with CPT every day.

 

[littledebbie]

Does anyone else think it's a ltitle scary that they have such young CFers already on the tobi on/off regimen? I know it's an individual thing, but I wonder what they will use when they are older? Is this starting to become "standard" instead of when necessary?

 

[littledebbie]

Does anyone else think it's a ltitle scary that they have such young CFers already on the tobi on/off regimen? I know it's an individual thing, but I wonder what they will use when they are older? Is this starting to become "standard" instead of when necessary?

 

[CowTown]

Hmmmm, I have been doing TOBI one month on/one month off for probably for about 8 years or so. I was actually part of the study group before it was on the market. During my month off, I continue to do all my other nebs, albuterol and Pulmozyme too. I've asked my doctors recently about TOBI and whether I was still sensitive to it because I've been feeling a little different. Apparently I am still sensitive to it, but my pharmacist said that studies have shown the people who stay on it over the years prove to keep better lung function than those who stop. Even when you start to not feel the benefits as much, he said those lung functions remain higher than the others. It's like we're between a rock and hard place! I swear it's so frustrating. I'd like to stop before I become resistant so I can still use it when I really need it, but those other tests have shown it helps regardless. Who knows. It's really annoying.

 

[CowTown]

Hmmmm, I have been doing TOBI one month on/one month off for probably for about 8 years or so. I was actually part of the study group before it was on the market. During my month off, I continue to do all my other nebs, albuterol and Pulmozyme too. I've asked my doctors recently about TOBI and whether I was still sensitive to it because I've been feeling a little different. Apparently I am still sensitive to it, but my pharmacist said that studies have shown the people who stay on it over the years prove to keep better lung function than those who stop. Even when you start to not feel the benefits as much, he said those lung functions remain higher than the others. It's like we're between a rock and hard place! I swear it's so frustrating. I'd like to stop before I become resistant so I can still use it when I really need it, but those other tests have shown it helps regardless. Who knows. It's really annoying.

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>littledebbie</b></i><br>Does anyone else think it's a ltitle scary that they have such young CFers already on the tobi on/off regimen? I know it's an individual thing, but I wonder what they will use when they are older? Is this starting to become "standard" instead of when necessary?<hr></blockquote>


Potentially breeding whole new generations of resistant bugs. I suppose they are hoping that more and more new antibiotics come out in the future to make up for resistances towards the tobra line. I learned my lesson from doing tobi a long time ago. The only reason im on collistin now is that the doc told me the way it is, the bacteria can't get resistant to it. I'll never do prophalactic antibiotics ever again.

 

[Faust]

<blockquote>Quote<br><hr><i>Originally posted by: <b>littledebbie</b></i><br>Does anyone else think it's a ltitle scary that they have such young CFers already on the tobi on/off regimen? I know it's an individual thing, but I wonder what they will use when they are older? Is this starting to become "standard" instead of when necessary?<hr></blockquote>


Potentially breeding whole new generations of resistant bugs. I suppose they are hoping that more and more new antibiotics come out in the future to make up for resistances towards the tobra line. I learned my lesson from doing tobi a long time ago. The only reason im on collistin now is that the doc told me the way it is, the bacteria can't get resistant to it. I'll never do prophalactic antibiotics ever again.

 

[thelizardqueen]

That worries me as well. I know that inhaled TOBI didn't come out till I was much younger, but I did fine without it growing up. I find that I've built up quite a resistance to alot of drugs growing up, that I can't use anymore - Amoxycylin, Cloxycylin, etc. It worries me that these young kids are using TOBI on/off at such a young age. What are they going to use as they get older and need inhaled drugs more often? I didn't start using inhaled drugs till I was 14. This is my same feeling as the "tuneup" situation. Their are young kids going in for tuneups, who really don't need them. What are they going to use 10 years from now when they really need those IVs, and they've built up a resistance to them? I'm glad I wasn't put on all of these "serious" drugs at a young age. That means there is more available to me in the long term future. For all the older people on here - when did you start using TOBI?

 

[thelizardqueen]

That worries me as well. I know that inhaled TOBI didn't come out till I was much younger, but I did fine without it growing up. I find that I've built up quite a resistance to alot of drugs growing up, that I can't use anymore - Amoxycylin, Cloxycylin, etc. It worries me that these young kids are using TOBI on/off at such a young age. What are they going to use as they get older and need inhaled drugs more often? I didn't start using inhaled drugs till I was 14. This is my same feeling as the "tuneup" situation. Their are young kids going in for tuneups, who really don't need them. What are they going to use 10 years from now when they really need those IVs, and they've built up a resistance to them? I'm glad I wasn't put on all of these "serious" drugs at a young age. That means there is more available to me in the long term future. For all the older people on here - when did you start using TOBI?

 

[Ruby]

I don' t understand why the bugs can't get resistant did the doctor explain that? Is it to treat pseudo? And if so why wouldn't the pseudo build up a resistance if you take the colo all the time? Sorry loadsa ??? marks!

 

[Ruby]

I don' t understand why the bugs can't get resistant did the doctor explain that? Is it to treat pseudo? And if so why wouldn't the pseudo build up a resistance if you take the colo all the time? Sorry loadsa ??? marks!

 

[littledebbie]

Yah, I'm on tobi too, I'm not knocking it I'm just glad I was not on it when I was a young kid....I guess I don't have as much faith that they are going to come up with more antibiodicts that soon for these kids. I would like to think the DR.'s are making thoughful decisions and not just subscribing to a "this is how we treat CF" philosophy, put everyone on this and then do x,y and z and come back in 3 months. I guess it's just part of my frustration with the system...jaded, sorry.

editing to say: Yes, Liz, thank you, that's it exactly. I went in the hospital for the 1st time since I was diagnosed at 9weeks, at age 8 and then I still only went when I got sick. I just worry they're actually over treating with antibiodics.

 

[littledebbie]

Yah, I'm on tobi too, I'm not knocking it I'm just glad I was not on it when I was a young kid....I guess I don't have as much faith that they are going to come up with more antibiodicts that soon for these kids. I would like to think the DR.'s are making thoughful decisions and not just subscribing to a "this is how we treat CF" philosophy, put everyone on this and then do x,y and z and come back in 3 months. I guess it's just part of my frustration with the system...jaded, sorry.

editing to say: Yes, Liz, thank you, that's it exactly. I went in the hospital for the 1st time since I was diagnosed at 9weeks, at age 8 and then I still only went when I got sick. I just worry they're actually over treating with antibiodics.