TOBI for exacerbations *another question*

[catboogie]

I WAS KIND OF SURPRISED AT THE NUMBER OF PEOPLE WHO SAID THEY USED TO USE TOBI FOR EXACERBATIONS BUT NOW JUST CYCLE IT. IF YOU CYCLE TOBI, THEN WHAT DO YOU DO FOR A BOOST DURING EXACERBATIONS? IT SEEMS LIKE IF IT WAS WORKING DURING THOSE TIMES WHEN YOU REALLY NEEDED IT, WHY WOULD YOU WANT TO CYCLE IT AND THEN NOT HAVE THAT OPTION ANYMORE?

THANKS.

do any of you do tobi just for exacerbations? i called my dr today because i've come down with a cold that quickly started bothering my chest and i wanted his advice. he suggested at my last clinic visit that i might want a boost during exacerbations that spread to my chest. anyway, i am upping my pulmozyme to twice a day, and also doing tobi twice a day for 2 weeks, then see how i feel. (obviously if i went to go ahead another 2 weeks either b/c i'm not completely better or whatever than i can.) he said if i'm not better in a few days we might also throw some oral cipro into the mix. that seems weird to me, though, because i have pseudo and cepacia (genomovar 2, not 3) and the tobi and cipro would just be working on the psuedo!?

how many of you go on tobi just for exacerbations??

 

[NoExcuses]

TOBI for exacerbations

i used to do Tobra for exacerbations before TOBI came out. No longer than 2 weeks cuz my doc was convinced that the preservatives would destroy my lungs.

When TOBI came out, I did it for a few years PRN. Then my PA started to give me more trouble and I went on 28 days on, 28 days off.

 

[thelizardqueen]

TOBI for exacerbations

I use to take Tobra for exacerbations as well. I would only do it for 2 weeks at most. Now I do TOBI one month on, one month off continuously. You can also take TOBI 2 weeks on, 2 weeks off as well for maintenance. Now when I have an infection I take Cipro with the TOBI.

 

[anonymous]

TOBI for exacerbations

What is the difference between TOBRA AND TOBI?

 

[thelizardqueen]

TOBI for exacerbations

TOBI is a pure form of Tobra specifically for inhalling. It has no preservatives and is easier on the lungs. Tobra is an IV med that can be inhaled. It has preservatives in it that can be harsh on your lungs.

 

[Ender]

TOBI for exacerbations

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

i used to do Tobra for exacerbations before TOBI came out. No longer than 2 weeks cuz my doc was convinced that the preservatives would destroy my lungs.



When TOBI came out, I did it for a few years PRN. Then my PA started to give me more trouble and I went on 28 days on, 28 days off.</end quote></div>

Amy are you serious? Why did they think it would destroy the lungs? Did you find yourself irritated with the tobra?

I've been on it for 2 weeks, and gonna stay on it for at least a month, maybe longer. My doctors seem fine with that, and so far, I feel great. Weird how they would say that...

Kiel

 

[NoExcuses]

TOBI for exacerbations

I'm serious. Preservatives can be harmful for the lungs. Otherwise why would anyone use TOBI?

 

[thelizardqueen]

TOBI for exacerbations

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

Amy are you serious? Why did they think it would destroy the lungs? Did you find yourself irritated with the tobra?</end quote></div>

Tobra irritates my lungs as well, and my doc has also said that for some it can be bad for your lungs (the preservatives). That's why he switched me to TOBI as well. Its way better on my lungs and I don't have any problems with it. My lung function was also down some when I was on Tobra, and since being on TOBI it has gone up some. One of the preservatives is Phenol. Phenol is used in fertilizers, paints, rubber, adhesives, etc. While it may not be dangerous to use in small amounts, you have to wonder about inhaling a preservative that's also used in fertilizer.

 

[Ender]

TOBI for exacerbations

Don't drink and post! hahhaha

 

[NoExcuses]

TOBI for exacerbations

OK so based on what you said above, you said that people use TOBI because Chiron makes money off of it? Does that makes sense? Patients want Chiron to make money? You're snarter than that, Kiel.

And TOBI's patent isn't out for another 5 years or so..... Again, Kiel - come on, you're smarter than that. Perhaps they developed it cuz they knew patients would be more compliant with TOBI if it took less time? Increased compliance = more med use. More med use = more $. It's a win win for both parties. Patients get a more convenient med and Chiron gets more money.

I don't think anyone would do studies on what most experts would agree is harmful for the lungs. "We have a hypothesis that preservatives damage the lungs. Let's test it in humans." This isn't Nazi Germany, Kiel. You can't test things on people that experts agree can be harmful......

 

[thelizardqueen]

TOBI for exacerbations

I would imagine that more money is made off of Tobra then TOBI, because Tobra is available at any time, where as TOBI isn't. I know my doc had to go through a whole wack of paperwork to get me TOBI, and I only have it for a year. After the year is up I have to reapply for it.

And of course you would think that something made specifically for your lungs, would be less harmful then an IV med that you inhale.

 

[Ender]

TOBI for exacerbations

well Tobra is 300 dollars a month, whereas tobi is 3000. That's why my hospital doesn't cover the Tobi, and probably why you had such a hard time getting it.

Although the preservatives can be irritating to some people, I don't think it's too bad with small doses. However, i think that's the reason you can only take 160 mg of tobra, as apposed to the 500 or so of TOBI. I think that's the main reason.

Besides, phenol is good for you.

hehhe

 

[thelizardqueen]

TOBI for exacerbations

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

well Tobra is 300 dollars a month, whereas tobi is 3000. That's why my hospital doesn't cover the Tobi, and probably why you had such a hard time getting it.</end quote></div>

While the prices are very different, that's not the reason why it was so hard for me to get it. TOBI is covered by the governement, but they prefere that you use Tobra first, and you need a very good reason to use TOBI (I can't recall the explanation my doctor gave me). My pharmacist even told me that they don't carry TOBI and have to specifically order it for me.

 

[Diane]

TOBI for exacerbations

I tend to use Tobi for exacerbations also. I also use it if i am having problems with hemoptysis. Seems having the antibiotic go directly to the source of infection helps to get the bleeding to stop . Now if i am having bad hemoptysis problems i dont use the tobi for a few days till it calms down a bit.

 

[catboogie]

BUMPING SINCE I EDITED THE POST.

 

[LouLou]

I use TOBI every other month. Amy is right about Tobra. It was designed for IV use thus has preservatives that the blood stream can filter out but going directly into the lungs ... the lungs suck up all those preservatives. Why would I want to put preservatives in my lungs when I won't even eat lunch meat with preservatives (try Boar's Head if you haven't already). I think it's criminal that some countries make you fight for TOBI over Tobra. Tobra for inhale had its day... before TOBI came out. End of story.
Oh and Kiel most people wouldn't want to stay on TOBI continuously because it encourages resistance.

 

[Ender]

Well Laura, you could still use it while you get an excerbation, just combine it with some iv meds etc. The idea is that while using it, you will get less axcerbations.

Also when you become resistant, there are other inhaled ABX that you can try as well.

They are also developing new inhaled drugs for pseudo, so I'm sure by the time you become resistant, there will be quite a few other things you can try.

I can see why people don't treat staph proactively, but i think pseudo is a different matter. Regardless if you have excerbations are not, the organisms are doing gradual damage. Look at me. Been hospitalized once, get sick quite rarely, but i do have some lung damage.

So for people like me, and i think everyone for that matter, it's important to keep the gradual damage to a min. Tobi helps with that.

It's up to you really how you wanna treat your cf. Either symptomatically or preventatively. As before i was more a symptomatic person, i am leaning more towards the proactive. I could go another 5 years maybe getting away with not doing tobi, but then at what cost to my lungs, ya know?

Kiel

 

[thelizardqueen]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>catboogie</b></i>

I WAS KIND OF SURPRISED AT THE NUMBER OF PEOPLE WHO SAID THEY USED TO USE TOBI FOR EXACERBATIONS BUT NOW JUST CYCLE IT. IF YOU CYCLE TOBI, THEN WHAT DO YOU DO FOR A BOOST DURING EXACERBATIONS? IT SEEMS LIKE IF IT WAS WORKING DURING THOSE TIMES WHEN YOU REALLY NEEDED IT, WHY WOULD YOU WANT TO CYCLE IT AND THEN NOT HAVE THAT OPTION ANYMORE?</end quote></div>

I would imagine that this would have a lot to do with drug resistance. With continual cylce use you have fewer exacerbations. You need that break so that your bugs don't build up a resistance. I could be completly wrong though maybe. I find when I'm off TOBI for 28 days, that I rarely ever get an exacerbation. When I do, then I do Cipro, or others take Colistin on the days that they don't do TOBI.