Need opinions... please read

skydiverchic

New member
actually a throat culture and a sputum culture are the same thing.

I think the treatment that a patient should get all depends on the patient and what her/his needs are. I think the lesser treatment should be used first, then if that doesn't work use the next step up.

You need to remember that if IV's are started at a young age,then the patient could get resistant to the antibiotics and run out of options in the long term.
 

NoExcuses

New member
the one thing that people don't seem to understand is that TOBI and tobramycin are the same molecule.

so if you're using the "less aggressive" treatment of TOBI, you're still running the risk of developing resistance to Tobramycin. Since they're the SAME antibiotic.

talk to microbiologists. the latest thinking in that community is to be as aggresive as possible with antibiotics to PREVENT resistance. here's why:

dead bugs don't mutate.

that's it. they don't mutate. so let's say you take TOBI to destroy PA. some days the TOBI reaches the site of infection, and some days, becuase of sputum blocking the sit of infection, the TOBI doesn't reach the PA. so some days PA is being killed, and some days PA isn't. well, PA takes several days of antibiotic exposure to be killed. so the bacteria that survive day 1 of TOBI exposure, the miss TOBI exposure day 2, are, by natural selection, STRONGER bacteria. so the next round of anbitiotics may take longer or may not even work on the PA because stronger, more virulent PA have been bread by lack of consistent TOBI exposure. this is the nature of inhaled antibiotics.

don't get me wrong. TOBI is a fabulous drug. and i use it myself. however, i am not newly colonized.

let's look at IV tobramycin. it's typically administered in the hospital or at home with patients who are good at giving themselves treatment at regular intervals. now, there is no question that tobra gets to the site of the infection - because it's circulating in the blood stream. there is no mucus to block IV tobra exposure. the PA gets hit, and hit hard, with antibiotics for 14 days every day, at regular intervals. this is LESS likely to induce resistance becuase of the constant antibiotic exposure - ESPECIALLY in newly cultured PA patients.

if the PA isn't killed on day 1, it's exposed again on day 2 to the antibiotic. if isn't not killed on day 7, it's exposed to the tobra on day 10 to be killed. and so on and so on. if all the bacteria are DEAD (which they more likely will be with tobra than TOBI because of consistent, predictable antibiotic exposure) there is no chance for stronger, more virulent bacteria to survive. DEAD BUGS DON'T MUTATE. cuz they're dead.

so we all must re-think our fears of resistance.

and truthfully, most patients with CF don't die because of lack of antibiotic choices to kill bacteria (unless you have cepacia...that's a whole different story). they die of lung failure from their lungs being damaged over and over and over again by infections.

so if you can prevent PA colonization for an extra 12 months, 24 months, etc in a little CFers life, you are buying time.

being aggressive with antibiotics and preserving lung function is the way to go.
 

anonymous

New member
Great explanation, thanks Amy. Aidan has not yet cultured PA but when he does I am going to ask for Ivs first. Our CF doc does not normally prescribe that (neither does Warwick) for 1st PA culture but I am going to try.

Megan
 

NoExcuses

New member
well Warwick has a great track record. so i would believe what he says over me any day.

but i would love to hear his reasons for why he does TOBI 1st and not IV's for 1st PA culture......

until then, i'll stick to my beliefs. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JRPandTJP

New member
amy, thanks for your detailed description. food for though for sure. it makes sense what you are saying. I still feel good about inhaled TOBI.

I am wondering if inhaled GSH, which thins out mucus for easier removal during CPT helps inhaled TOBI work better when PA shows up? I really can't wait to see what the studies show from CFF on GSH, very exciting.

Megan, I suggest researching GSH on your own by visiting a few sites to learn about dosing, side effects, if inhaled is right for your child, ect by visiting: <a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/gsh/gsh.htm">http://members.tripod.com/uvicf/gsh/gsh.htm</a> <a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/gsh/gshprospects.htm
">http://members.tripod.com/uvicf/gsh/gshprospects.htm
</a><a target=_blank class=ftalternatingbarlinklarge href="http://members.tripod.com/uvicf/
">http://members.tripod.com/uvicf/
</a><a target=_blank class=ftalternatingbarlinklarge href="http://glutathione-report.com/blog/index.php/2005/03/12/glutathione-and-cystic-fibrosis
">http://glutathione-report.com/...e-and-cystic-fibrosis
</a><a target=_blank class=ftalternatingbarlinklarge href="http://www.sharktank.org/index.php
">http://www.sharktank.org/index.php
</a>
We get ours from TheraNaturals. There is a different one for oral as compared to inhaled (which is neutral and buffered). Giving oral with a little vitamin C at the same time helps with absorption. I labored over inhaled for quite some time but am very happy we choose to do it.
 

charl72

New member
I am pleased you posted this thread - my daughter cultured PA when
she was 10 months old, took Cipro for 3 weeks, and nebbed Colomycin
for 4 months.  Then she stopped the treatment, cos she had
three clear cough swabs.  Cultured PA 12 months later, took
Cipro for 3 weeks and has been nebbing Colomycin since last October
and her Consultant would like her to continue this for at least 12
months in total since she has cultured it twice.  She has
never been on ivs.  Does this sound about right to you?<br>
<br>
Grateful for any advice.<br>
<br>
Thanks.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

welshgirl

New member
joe cultured pa last oct , he nebbed colomycin for three months and has been clear since then . this is uk by the way. 12 months is long time charlotte you must be going crazy. joe hated the nebulizer (sp) took too much out of his playtime<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

folione

New member
My son w/CF is 3 and has had 2 bronchoscopies: one at 14 months when he first cultured pseudomonas and again at 3+2months for the same reason. He came through both of them just fine and it made us feel more confident about our treatment routines to hear the Dr. say that everything was cleared out down in the lungs.

His 1st PA at 14 months bought him 3 weeks in the hospital for IV but he still cultured it again several months later. That time we went for Tobi on/off until he'd passed 3 clean cultures in a row. The spring of his 3rd birthday he cultured it again and we opted for home IV followed by a month of Tobi. He got a bronch and CT scan at the endn of the IVs and again got an "all clear" report.

So what am I saying: going with the nuclear option does not mean PA won't come back so be sure you are not making a decision to do IV/bronch with the idea that you can do one scary thing and be done with it. But I'm also saying that kids are more resilient than grownups and can handle quite a bit.
 

folione

New member
bronchoscopy is when a tiny flexible tube with a camera is run down the windpipe into the lungs to look around. It also has a means of taking tissue/junk samples and of washing out the lungs.
 

coltsfan715

New member
I just wanted to add a comment in response to Amy's post on TOBI vs. IV Tobramycin. I am by no means a drug expert, but have been told by docs that the aerosolized form of TOBI is stronger than IV Tobra. This is possible because IV Tobra goes directly into the blood stream and thus enters all organ systems. The strength of the dose has to be lowered so as not to cause damage to other vital organs. Whereas TOBI can be stronger because it is inhaled and going directly to the source of the problem (i.e. lungs housing the PA). Yes it will ultimately end up in the blood stream, but a large portion of the med is absorbed in the infected areas within the lungs. That is at least how it was explained to me when I asked about it.

So yes IV Tobra may reach all areas of the lungs, but if the dose of the med is not strong enough to eradicate or kill the bacteria in all areas then would it not essentially cause the same problem - the bacteria would still be alive and be "stronger" and more able to resist the effects of the IV med. Just a thought that entered my mind. I do not take GSH - nor know anything about it, but I think if a patient were to maybe take TOBI in conjunction with CPT and another mucus thinning aerosol (i.e. pulmozyme, H.S. or GSH - if GSH is a mucus thinner) then it would maybe help to keep airways somewhat clean and allow the med to reach all areas of the lungs.


Lindsey
 

NoExcuses

New member
you are correct, Lindsey. And this is why drug sensitivity tests are done. so if your PA is sensitive to Tobra, then it will be effective in IV form.

TOBI can be given at higher concentrations - you are 100% correct. however, no antibiotic is any good, even at super strength, if it cannot reach the source of the infection. which is where IV tobra has a huge advantage.

remember the context here. i am not advocating against TOBI in any way shape or form. it's an incredible delivery system. the context of my comments are for 1st time PA patients who are trying to get rid of PA before it sets up shop.

and patients who culture PA for the 1st time often times culture a strain that is sensitive to tobra. however, many docs do a cocktail of IV meds when in the hospital - fortaz and tobra, cipro and Tobra, etc.

but lindsey you are right - in an ideal lung environment where no mucus exists in airways to block TOBI from reaching the site of the infection, TOBI can be given at higher concentrations than IV Tobra.
 

chipper28

New member
I recently was prescribed Tobradex which is an ophthalmic drug containing tobramycin (.3%) and dexamthasone (.1%) for an eye infection. Is there a problem with using tobra for this purpose in that it might result in my having resistance to tobra? I'm a little confused about what it means for a person to be resistant to an antibiotic. Does it just mean that you have some type of bugs that are resistant, or can you somehow actually become resistant?

Does it being given through the eye somehow affect the likelihood of getting resistant? It's worked amazingly well and amazingly quickly, but now I'm worried that it was a waste of administering it?
 

coltsfan715

New member
When you are resistant to a drug ... it simply means the bacteria you grow is resistant to that drug. I would not imagine that using the eye drops would effect the bacteria in your lungs in any way. I may be wrong, but I doubt that eye drops would cause you to become resistant to Tobra down the line.

Also to add, maybe not in all cases, but just because you develop a resistancy to a drug does not mean you will NEVER be able to use that drug again. There are several oral antibiotics that I have used at times (Cipro, Levaquin and Bactrim) all of which I have become resistant too at one point ... only to be sensitive too them again a few months later. Yes resistance is something you want to try and avoid, but I just wanted to throw that out there about the oral antibiotics and such. I become resistant to Cipro every few years then take a break from using it for at least 6 months and then poof my cultures start showing I am sensitive again. Just the nature of the beast I supposed.

Sorry to stray a little on that. I do not think the eye drops will effect the resistancy/sensitivity of the bacteria in your lungs. Again I may be wrong, but I am thinking you will be fine.

Lindsey

Also to add: I take my meds as prescribed - no skipping and still have problems with resistance because I am never able to eradicate the junk that I grow.
 

anonymous

New member
Amy you write that inhaled TOBI works best in lungs that are you full of mucus and that TOBI has fewer systemic effects.
I am wondering if that is why doctors prescribe inhaled TOBI for the babies and small children. That their lungs have less mucus (haven't had the time to build it up) and that they are more susceptible to systemic effects (at least in most other situations doctors try really hard to give little kids the treatment or modality that is least apt to get into the system if that's not actually what is needed).
Often, as you know, the treatment that is optimal for adults is not the optimal treatment for the little ones (and vice versa).
-LisaV
 

anonymous

New member
Should sign in so I could edit
Obviously that first line should read "works best in lungs that are NOT full of mucus"
-LisaV
 

JRPandTJP

New member
Lisa and Lindsay, very important point about little ones and THEIR lungs. Many children don't present lung congestion/issues until later in life. Not saying you shouldn't protect lungs before sypmtoms occur or do therapy, just choose a treatment that works best for them with as little risk as possible systemically. We chose inhaled TOBI at first PA culture for that reason and I am happy we did. So far so good. He had 2 rounds of IV antibiotics at dx time 3 1/2 months old and again at 9 months when he had RSV. I hated every minute of it because it was just done "in case" something was going on...he was so little ;-(
 

anonymous

New member
My daughter (now 3) cultured PA on her first culture (just after we switched clinics - the first clinic didn't even want to culture her!) when she was 14 months old. Here is what happened:

June: diagnosed with CF, no culture done

July: apptointment at local CF clinic - Dr. didn't want to do cultures bc my daughter wasn't showing any symptoms (red flag for me!).

August: New clinic, Cultured PA (EEEK!) did a round of TOBI with Bactrim (not sure why Bactrim but we were new to CF then so we didn't even ask-yikes on our part)

September (just after first TOBI cycle): clear culture

October: we switched DRs (to see the head of the clinic) and she cultured PA again so her new Dr put her on TOBI and Cipro saying that this is considered the best treatment for first PA cultures (our clinic has been involved in trial studies on this).

November: clean culture

December: TOBI Cycle, clean culture afterwards

January: clean culture

Feb: TOBI cycle

March - nothing

April - TOBI cycle, clean culture, did CT Scan which showed no signs of infection, damage, etc.

NO more TOBI since April (2004) and no PA since either.

It is really hard to know what to do! I personally am glad that we went the route we did with TOBI/Cipro then 3 more TOBI's but only bc it worked for us...No matter what you do at first (TOBI or IV's) I would want to be aggressive by keeping up with TOBI for a few months bc your child may just be having an "at risk" time due to cold, allergies, etc and the TOBI could held him/her avoid PA during that time. One clean culture just wouldn't be good enough for me to stop fighting PA off - it is just too important to avoid colonization as long as possible!

Hope this helps!
 
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