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In a message dated 10/14/2003 11:53:49 AM Central Daylight Time,

kristine.patrick@... writes:

e

She will be OK!! pseudomonas will come and go. We have used Tobi and yes

there are side effects my girls have not had any other then when my oldest was

on

Tobi with an IV not that was scary. I hope she never does that again! You can

also use Collistin it is what my oldest is on right now. It is the Danish

method and I really like it. You have to do it 3 times a day but you it only

takes

10 to 15 to do. The Tobi takes anywhere from 30 to 40 minutes and that is

really hard to get a kids to sit through that. My daughter is also on Cipro

which

I also hate because she has complained of her joints hurting and that is one

of the side effects of cipro it damage the bone cartilage. I have not been as

good about give her that. We have also been using the GSH and so far are doing

really well with it. Next month we go in for a culture so will see if the GSH

has helped that.

CELEBRATE THAT THE MRSA IS GONE!!!! Deb A

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e,

Calm down, count to 10, take a deep breath. has been on TOBI for

several years now. The only side effects that we have experienced are bad

taste, more cough, and sometimes she looses her voice(not necessarily a bad

thing sometimes) haha. With us it seems to come and go as far as growing

the bugs(pseudomonas). At least we have something to treat it with. Take

one day at a time.

AND IT IS NOT MRSA!!!!

Best wishes,

Tina W., mother of , 17yoa wcf

results are in

Ok everyone, I need a little help. the Dr. just called. has

staph aureus and pseudomonas. this is the first time she has

cultered pseudomonas ( we really need to come up with an

abbreviation for this word)and he is going to put her on cipro for

three weeks and tobi for 28 days on and then 28 days off etc. She

will continue to take the pulmozyme and do her vest twice a day. Oh,

I forgot, the good news...no MRSA! However, I just don't know what

to do with this information. I know that typically cf'ers

eventually end up with pseudomonas and so I am not too surprised at

this news. Regarding Tobi, are there any side effects when using the

nebulizer? He said that there were side effects when using the other

form ( liquid form?) like hearing loss and damage to one of the

organs, I think he said the kidney. to tell you the truth after I

heard the word pseudomonas, the rest was all " blah blah blah " like

Charlie Brown's teacher. He also said that eventually the cipro will

stop working...then what!?!?! What can I expect? SOMEBODY PLEASE

TELL ME SHE IS GOING TO BE OK!

I appreciate all your help!!

e

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I have two daughters with CF and my oldest never had any problems with a

cough while on Tobi but my youngest would cough through whole 3 months she was

on

it. As soon as she was off the cough was gone. So I would say everyone is

different. Oh ya they also had the hoarseness problem while taking tobi. Deb A

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Hi e,

has been on Tobi for more than 3 years now. We do not notice any voice

problems or anything other than less coughing than when she is in an " off " month

but we monitored her tobi levels in the beginning even though it is the inhaled

form. I forget how old is, but if she is under 6 you should probably

request that they monitor her. (the dreaded peak and trough) 's levels

were very high when she took 1 vial 2x daily. She takes 1/2 vial 2x daily and

it has gotten rid of the pseudo (or at least she isn't culturing it any more)

and her levels are fine.

The doc's assumption that it won't cause problems because it is not IV is only

partly true. Not as much gets into the bloodstream because it is not going

directly through the bloodstream but the blood is oxygenated in the lungs where

the tobi is entering the body. If oxygen can get into the blood though the

lungs, then it stands to reason that so can the Tobi!

I am not trying to say not to use it but to be cautious!

Mom of 5 with CF, on Tobi for more than 3 years!

results are in

Ok everyone, I need a little help. the Dr. just called. has

staph aureus and pseudomonas. this is the first time she has

cultered pseudomonas ( we really need to come up with an

abbreviation for this word)and he is going to put her on cipro for

three weeks and tobi for 28 days on and then 28 days off etc. She

will continue to take the pulmozyme and do her vest twice a day. Oh,

I forgot, the good news...no MRSA! However, I just don't know what

to do with this information. I know that typically cf'ers

eventually end up with pseudomonas and so I am not too surprised at

this news. Regarding Tobi, are there any side effects when using the

nebulizer? He said that there were side effects when using the other

form ( liquid form?) like hearing loss and damage to one of the

organs, I think he said the kidney. to tell you the truth after I

heard the word pseudomonas, the rest was all " blah blah blah " like

Charlie Brown's teacher. He also said that eventually the cipro will

stop working...then what!?!?! What can I expect? SOMEBODY PLEASE

TELL ME SHE IS GOING TO BE OK!

I appreciate all your help!!

e

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Hi e,

Good news about no MRSA. And the abbreviation for Pseudomonas is Pa

(as in, Pseudomonas aueruginosa).

Both Cipro and TOBI will lower 's magnesium levels, which

eventually creates a vicious cycle of ill health. Magnesium depletion

can lead to her becoming resistant to other aminoglycoside

antibiotics such as gentamycin and amikacin, and it could also lead

to the Pa mutating into a mucoid form, which is more resistant to

antibiotics.

Additionally, despite what some doctors would lead us to believe,

some people do experience ototoxic effects from TOBI, not just the IV

form of tobramycin.

Some research demonstrated that magnesium supplements taken before or

during courses of aminoglycoside antibiotic therapy reduces ototoxic

effects. While on the other hand, ototoxic risk increases when you

take iron supplements while taking aminoglycoside antibiotics. These

studies were done using IV forms, not inhaled, but why run the risk

when you know that whatever is inhaled ends up in the blood stream

and other organs?

Also, Cipro is very hard on little ones. She may complain of severe

leg pain, some hurt so bad they cry when trying to walk. Magnesium

will help reduce this painful effect.

If you live in a sunny climate, Cipro can make her sun sensitive, so

you may need to restrict outdoor activities, including gym and recess

at school.

Kim

--- " e " <kristine.patrick@s...> wrote:

Ok everyone, I need a little help. the Dr. just called. has

staph aureus and pseudomonas. this is the first time she has

cultered pseudomonas ( we really need to come up with an

abbreviation for this word)and he is going to put her on cipro for

three weeks and tobi for 28 days on and then 28 days off etc. She

will continue to take the pulmozyme and do her vest twice a day. Oh,

I forgot, the good news...no MRSA! However, I just don't know what

to do with this information. I know that typically cf'ers

eventually end up with pseudomonas and so I am not too surprised at

this news. Regarding Tobi, are there any side effects when using the

nebulizer? He said that there were side effects when using the other

form ( liquid form?) like hearing loss and damage to one of the

organs, I think he said the kidney. to tell you the truth after I

heard the word pseudomonas, the rest was all " blah blah blah " like

Charlie Brown's teacher. He also said that eventually the cipro will

stop working...then what!?!?! What can I expect? SOMEBODY PLEASE

TELL ME SHE IS GOING TO BE OK!

I appreciate all your help!!

e

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Hi e,

SHE IS GOING TO BE OK!!!!

Tobi is tobramycin, an antibiotic which is usually given by IV. It has been

used by inhalation with CF patients for years, I think about 4 or 5 years ago

they came out with Tobi which is meant for inhalation. It works on pseudomonas

(How about we all call it PA?). Cipro also works against PA. If she becomes

resistant to cipro then if the Tobi is not doing the job and is sick they

may put her on IV's. I'm sure you're familiar with IV's, They can be done at

home or in the hospital. Usually they start you out in the hosp and if things

are going well and you want to they may send her home on IV's. Jump that bridge

when you need to. They aren't all that difficult to do.

Try not to worry too much, like you said you weren't all that surprised. PA can

be treated. Keep doing what you're doing. There are a few other oral meds they

can try like levaquin, floxin, etc, I don't know them all. My daughter has been

on a few of them(one at a time!) at different times. They have worked for her

and avoided IV's some times in the past.

I hope this helps. take care!

love,

M

Mom of Nick age 21 nocf and age 19 wcf

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