Stopping TOBI

[CowTown]

Hello,

I'm going to be seeing my doctor April 3 with an annual so it'll be the full check up and tests. I am planning on taking all my notes with me on OO, GHS, Hypertonic Saline, etc. so that I can tell him these are the things I'm interested in trying.

Here are my two questions and concerns:

1. I am wondering if stopping TOBI for continued use, and use only when I get sick would be something to discuss. I told my pharmacist last year that I felt I was starting to become immune to it. He told me that even after you become immune it has still proven to be helpfull in the long run for your lungs. I just wonder b/c I was off of it for about 2 months, instead of just 1, then started up on the 3rd month and felt better with it. I just wonder if it's worth trying to use it less so that it helps *more* during those special times.

2. I feel like I'm up against a wall with this MAC bacteria that I have. I am very very hesitant to start on the 4 different drugs that would be used to treat it b/c the side effects can cause kidney failure and hearing loss. I've already had kidney problems twice, and I don't want to take a medicine that I know most likely will hurt them again! For this solution, I REALLY am interested in trying the supplements listed above and see if any of those kill off this nasty bug, before risking my kidneys. I'm getting uptight about it b/c I don't know what my doctor will say and I really want to protect my little ol' kidneys. I think this bug is bringing me down, physically and I feel I need to do something or else I'll just get worse.

Also, I went for a massage and acupuncture today and the lady had a suggestion about OO and herbs in general. She said herbs are typically used until the body feels better, and not usually used for long term use. So this was an interesting point or thought. She also pointed out from Chinese medicine point of view, that I personally have a lot of heat inside my body, my organs and lungs and sinuses all have too much heat. This heat can cause more congestion and issues. She recommended to read up and start eatng more "cooling" foods and drinks to help lower congestion. Apparently, Oregano is a cooling agent and she thought I should try it, especially before taking any med that could hurt my kidneys. If it was a heat generating thing, she would have recommended against it. But that was neat to hear another positive perspective on it.

I think that's about it. I'll write more if I think of another question. I' getting axnxious about taking more control and doing other things than this BS stuff i'm doing now. I want to get better damn it.

 

[thelizardqueen]

I can relate to going off the TOBI for longer then a month. About 4 years ago my doc had me on Tobra one month on, one off, and after being on and off it for about a year, he decided to take me off of it and only use it when I was sick so that I wouldn't build up an immunity to it. I did great for those 3 years that I was only on it once or twice. Recently I've been thinking about starting up on it again for a few on month/off months, but we'll see what my doc has to say. I definitly think the Tobra works better for me, now that I've been off it for awhile.

 

[RoyalPrince]

2 things that come to my attention and would like to share... just some thoughts here so one go getting all defensive... i don't really think your going to get a positive reaction from your doc (i don't know him/her and they could be an open minded individual) on the OO because as we have discussed it is not a tested substance and i don't think they would advise its use...

the second thing i think i remember from earlier forum discussions on OO that it kills bacteria and bad things by heat (others who know more about it can comment on that but i'm fairly certain thats what was said)... now she seems to think it is a cooling substance...

ummmmm any thoughts...???

 

[celtsfan]

Hi Kelly,<br>
<br>
Interesting to read your point about Tobi.  I have been having
the same thoughts and planning to tell my doctor I want to stop it
for awhile while I am feeling good.  I have been showing
resistant to Tobra for last year, but my doc has said the same
things.  I guess when they do the sensitivity testing on our
sputum then use Tobra as if it was being done via IV which is a
less strength then what can be given via neb as there are less
dangerous side effects.  Therefore I have been told it is
still worthwhile to do every other month.  Since I have been
doing more reading of late on CF meds in general it seems some
doctors are switching to only recommending Tobi via inhaled only
when fighting an infection flare up.  So I don't know, but I
think I could be spending better time with the 40 minutes a day
during the on months.<br>
<br>
Concerning OO.  I actually just started a day and half ago and
seem to think I notice a  benefit all ready.  Today at
work I kept taking deep breaths at my desk because it felt so good
and clean.    Some of this is because of the
Hypertonic Saline, which I started month and half ago.  This
is working well for me as well.  I did read
somewhere that it is best to treat OO like an antibiotic and
take a break from it, or only use it for a while when
needed.  If things continue to go well I was thinking to
experiment with one month on, one month off with the OO.  At
this point since there are no studies and data I think there will
be some personal trail to see what works best for each
individual.<br>
<br>
Brian

 

[NoExcuses]

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[Faust]

I read the responses, but can't think of anything to say that is productive. But everyones points were cool and made good points. I overall agree with the "try it, if it doesnt work/make you feel better after X amount of time, stop it". There has been quite a few discussions regarding OO and the "Use it for a while like an antibiotic, then stop it for a while" stance. That is a very valid stance, and I could have possibly felt like I do now on that regimen. But (and i'm saying but from our perspective), that thought pattern was brought forth regarding "normal" people who happen to be sick. Not people like ourselves who are chronically F'd up with "bugs" and microorganisms of such rediculous magnitudes running through all parts of our bodies.

To me it would be like telling a fat kid to be careful on his consumption of popsicles, that it could contribute to his obesity...

Then try thinking you are giving great advice if you say that same thing to a fat kid, who is on fire and needing to put out the flames...


In general, who knows. It could be best to do OO similarly how we do/did Tobi, and use it on month, off month...And that can make such good sense. But it's use for our purposes is so questionable, it ultimately comes down to you finding out what works (or maybe doesnt work) for you, and then making up your own mind how to use it frequency, and doseage wise.

It is pretty cool though, for us adults using something like OO or GSH who are relatively healthy, basically being pioneer guinea pigs in these areas. Not many people have the balls or foolhardiness to do these things...But we do...We could either fail miserably, or could possibly open up brand new doorways to the understanding, and most importantly, the treatment of our disease due to our actions. I think that's pretty darn cool regardless. I'm willing to sacrifice my life and what limited future that I still have in this pursuit. I could lose, but I could win. Rolling stones don't gather moss ya know...<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CowTown]

Well thanks for everyone's feedback on this!

First off, Amy, I just saw your USC TV show and we have the same doc! Shapiro and Rao are my doctors and that whole CF team is mine as well. So from what you've just talked about I'm sure I'll be hearing the same things since I'll be seeing the same people. One thing is for certain, I guess I will be able to start the hypertonic saline since you're on it too. <img src="i/expressions/face-icon-small-smile.gif" border="0"> You're show was great, you are really an inspiration!

I fully understand about preserving lung function now, that's the name of the game. I am just wondering if the process in doing so is not the best process. I won't go off on the tangent I could about pharmaceutical companies not researching alternative ways and supplements relating to CF due to lack of profits on their end, (b/c I could go off on that), but that whole topic really "chaps my hiney" as SeanDavis would say. Which leads me to believe in other possible scenarios like GSH and OO. I am really ready to be in the lead and not keep waiting on the doctor's pace for making signicant change or serious preservation. I know my doctor is very conservative, he's said that before, and I think that's good b/c it one of side of things covered pretty well. The other side is to be *more* proactive. I just want more, it's 2006 and I'm so sick of the fact that there isn't more for us to save lives and make much larger impact on all CFers' lives. It's 2006, think of all the other things technology and advances have occomplished, and yet we're still in the progressive category. What?!* Cancer too, what the hell is up with that? It really gets my goat. Well......I guess I did my tangent, I didn't mean to.

About oregano being hot or cold, the acupuncture lady said that oregano is a heating agent BUT because of it's "bitter" attribute, that cancels the heat out and makes it a cooling agent. So I'm a little confused, but that's what she said. The heat we might all have in our organs and bodies is most likely due to the meds. Hot or cold, I want to try it and see what it does for me as well as the other stuff. I'm really excited about it all, but deep down I want my doctor to support me in this too. I guess we'll find out. Espcially if these things can increase my lung function for the time being which would give me a huge boost and make running and excercising easier in order to maintain the function. I want that boost that I do'nt believe I will ever get while doing what I'm doing now. That's the main point.

Liz, I remember you said you were taking TOBI only for when you got sick. That has been what's made me think of this too.

The other problem with treating today and worring about tomorrow, tomorrow, is that with what you're doing today COULD f*ck up your tomorrow. For example the meds they want to treat my MAC with most likely will put me in kidney failure. How can anyone accept a treatment for today that will make your tomorrow worse?! It's unbelievable. Unf*ckingbelievable.

 

[NoExcuses]

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[Faust]

Eventually, ya gotta take the bull by the horns. I was personally sick of the cycle I was on, and my conventional treatment essentially making me worse. Not to mention I picked up two new bugs in the hospital, one apparently being a multi resistant staph. All the more reasons to stay OUT of the hospital at all costs.


I think there are TONS of high technology potential treatments for CF, as well as alternative natural treatments as well as eastern treatments for it. We will never get to see any official large scale research in these fields because we have an "orphan disease". 30,000 people in the US with CF? Heh MUCH more people die slipping in their bathrooms annually than that number, and you certainly don't see any large strides being made in bathroom safety and research <img src="i/expressions/face-icon-small-smile.gif" border="0">


I have always been a science geek, and probably should have gone into some form of medicine, my aptitude tests I have taken always stated as much. I have often wondered, that if UV light can be used to eradicate microbes off of produce and other surfaces, why couldn't there be say a monthly bronch type approach with the use of strong UV light into our lungs to do the same thing? I have ideas along these lines ALL the time, that seem to "make sense", but of course i'm just a guy, and nothing more, so it doesn't matter.


As it stands now, i'm 8 or 9 months (just a guess, sounds right) into my OO regimen, and I still feel 100 times better than I have ever felt on any of my past conventional CF regimen treatments. Due to my PFT's, my culture, my gout and CF related arthritis 100% being gone, how clear I am, how thin my mucous is (though i'm sure 1800mg of NAC helps also), the color of my mucous, how generally very clear I am, my almost total cessation of lung bleeds, and how I feel in general, I just can't ignore those results considering where I was before and for how long these results have been with me. It probably won't work for everyone, but it sure has worked for me, so much so I almost 100% feel like a "normal" person most of the time, and not constantly suffering with the CF symptoms like I always used to.


I dunno, life sucks, and we get jack crap medical/technology support wise cause we are such a small niche disease group. You either get sick of things not being how you want them to be and experiment, or you don't.

 

[Giggles]

I do Tobi on 28 days and off 28days and I feel SOOOOOOO much better when I am on Tobi and wish I can be on it all the time, but I am not and I am scared I am going to become resistant!!! There is a study coming out that my doc wants me to participate in that you inhale Tobi in a powder form and it takes like less than 3 minutes or something compared to the solid 20-25 minutes it takes me to inhale the Tobi thru the nebulizer. Has anyone heard of this new study? Or has done it???



Jennifer 34 years old with CF and CFRD

 

[Faust]

I felt great on Tobi too while I was on it. The thing is, just by the simple nature of how Bacteria operate, and how nearly all antibiotics are, it's pretty much guaranteed you will become resistant to tobra after a long period (or short for some people) of time of being on Tobi. The quote "Smoke em while you got em" comes to mind.

 

[CowTown]

Hi Jennifer,
I do the same thing, month on, month off. I was actually part of the original study for TOBI whenever that was, I think I was still going to Children's Hospital which means it would have been some 11-12 years ago. I've been on it this whole time and just in the past 2 years have I started to tell a diffference where I'm not feeling the same benefit from it as I used to. I don't like that that's happening, which is why I'm now starting to think about slowing it down. I haven't heard of the power and new study.

 

[thelizardqueen]

I've been on Tobra for 11 years now, and am glad that every once and awhile I go on an extended break from it. I still feel the benefits from it to this day, and I've yet to develop a resistance to it. I think its a great idea to go off TOBI for awhile and use it only when you need it now.

 

[CowTown]

Hi Liz, yeah I think so too. The only thing is that I'm almost positive that my doctors will tell me not to do that. So, do you go ahead and stop it anyways after they told you not to? I guess that's part of where you choose to take the bull by the horns or not. Hmmmmmm.

 

[thelizardqueen]

Its your body - you know better then the doctors how it works. A doctor can't force you to do anything you don't want to do, if anything he should support you when you tell him that you're adamant that you want to stop it to see how it goes. Like someone here once said to me - you're the customer and your doctor is the service provider. I say take the bull by the horns. I quite honestly don't think I'd be quite as healthy as I am now if I listened to my doctor every single time. You have no idea how many docs wanted to put me on IVs for tuneups when I didn't need them. I never listened to them, and have only needed an IV once for my CF in my life.

Go off it for awhile, and see how it goes. If you feel better on it, then off, then you can easily go back on. But again - I'm one that worries about resistance. I would worry about resistance after being on it continually for so long.

 

[CowTown]

That's good to know Liz. It's interesting. Thanks!

 

[celtsfan]

Jennifer, I have read some about the powder tobi, it sounds
interesting because it takes so much less time to do.  Lets
hope it is as effective for those who still benefit from it.
 I believe this is being done by the same drug company that
makes Tobi.  Picking up on Kelly's comments, this is
interesting, since why would they spend money on this as it
probably will not make them any more money then just sticking with
the current Tobi.  What I believe it does do is try to stay
above the competition.  You may have heard of the Pari eflow,
which allows you to neb medicine a lot faster.  Well a while
ago, sourcecf I believe was selling a different form of Tobra for
nebbing in the Pari eflow which could be nebbed in only a few
minutes.  Well, the maker of Tobi, cried foul and said that
they skipped over some FDA stuff.  I don't remember all the
details, but just think if Tobi takes 20 minutes and this other
inhaled Tobra  thing takes 3 minutes, well Tobi is going to
loose alot of customers.  So makers of Tobi put a big lawsuit
on them.  Makes sense that they now try to invent this
powder form to compete with others.  Maybe I am being a bit
cynical, but I am in complete agreement that drug companies motives
are to please their stock holders and make their stock options more
valuable, which might not always mean the best for us.  If
there was no competition there would be no value for the maker of
Tobi to make it better and faster.  My opinion anyway.<br>
<br>
Brian <br>

 

[LisaV]

They spend money to develop new delivery methods because that keeps them with a product that can not be generic. Just think about how cheap tobramycin and saline are, but they get to charge a fortune for TOBI because they mix them and you inhale it. At some point TOBI will become "public" (that is, others can make a generic version) and the price of the generic TOBI will be low. At that point (I'm guessing) they want an expensive powdered version of TOBI on the market that only they can sell.

 

[celtsfan]

Good point Lisa, that is also true.

 

[NoExcuses]

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