Re: (CF Parents) Tobi Question

[Guest guest]

That is true. It isn't the way one wants it to be generally.

BUT-------There are some folks who actually take it regularly too & it is

generally just 28 days on -----28 days off. It is just tobramycim compounded

a bit differently . It has been used for YEARS............people were

prescribed it in many ways. it has been used aerosol for I know of 19 years

.. soooooooooo, if your clinic says it is o.k. , then it should be.

As a possibility ., Ask your doc OR the clinic .IF they will get the 2

missing vials from the hospital pharmacy. Offer to pay , of course. They

should be able to do that. I wish you the best.......

We really CANT open package & then sell it so it isn't that the pharmacy

wont open for you .What would they do with the rest in that box? It is as

costly for the pharmacy to purchase , almost as the patients.

That is the truth too. .........

OR, you could order the next months dosage & take 2 from it , keep doing

that and it stays well in refrigerator........

Give me a call 1- if you cant get a hospital to do it AND/OR

your doc says you absolutely need to take a full 28 days...... . I

will be out of office next Thurs, Friday.

bets wishes,

LOVE & HUGS,

grandmoMBEV

..

(CF Parents) Tobi Question

I was recently given a box of Tobi for my son by a man who had a transplant

and did not need it any more. The problem is that it is short one

packet

(two days worth). Does anyone know how I can go about getting a packet?

The

clinic told me that the pharmacies will not split up the boxes, but it would

be okay for him to skip the last two days. What do you all think about

this? I

hate to waste almost an entire box of Tobi, but why would 26 days be okay if

he was prescribed 28 days? I am confused.

Thanks,

Peggy

[Guest guest]

From: jojay9@...

Sent: Thursday, November 06, 2003 7:17 PM

Subject: (CF Parents) Tobi Question

jojay9@... wrote:

>> What do you all think about this? I

> hate to waste almost an entire box of Tobi, but why would 26 days be okay

if

> he was prescribed 28 days? ... Peggy

---------

Because the 28 days is only an approximate guess of need, anyways. There is

no study that says that it takes everyone exactly 28 days to control the

bacteria.

The study that did the 28 day on - 28 day off cycle of TOBI did not compare

to 26 days on - 26 days off, etc.

Interestingly, no study, to my knowledge or to our doctor's knowledge, has

yet looked at long term antibiotic resistance developing from the 28 day

cycling vs. steady use of TOBI or Tobramycin. Some clinics (I think, more so

outside the U.S.) prefer to continue with Tobramycin for a longer term. At

our clinic, if the Tobramycin is being used to combat Pseudomonas, the

general protocol is to prescribe the inhaled Tobramycin until the patient

has 2 sputum cultures, three months apart, clear of pseudo.

There is still much research needed to know what is best.

M

[Guest guest]

tobi protocol at my sons clinic: tobi by neb for 30 days, every other

month/continuous. no matter what the health is at that time.

Dani-mom of 15.11w/cf samie17wo/cf

[Guest guest]

Hi,

My daughter is on TOBI ever other month, not the 28 day cycle. This is a Tobi

Month, all month. All of December will be a Bactum month. All of January will

be a Tobi month. The Doc and I felt that this would be easier to remember and

since it is not a big deal if they are on it for a few more or less days he felt

that this was OK. He did tell me that it really is just an approximation

anyway. I'm sure that 26 days will be alright.

(CF Parents) Tobi Question

jojay9@... wrote:

>> What do you all think about this? I

> hate to waste almost an entire box of Tobi, but why would 26 days be okay

if

> he was prescribed 28 days? ... Peggy

---------

Because the 28 days is only an approximate guess of need, anyways. There is

no study that says that it takes everyone exactly 28 days to control the

bacteria.

The study that did the 28 day on - 28 day off cycle of TOBI did not compare

to 26 days on - 26 days off, etc.

Interestingly, no study, to my knowledge or to our doctor's knowledge, has

yet looked at long term antibiotic resistance developing from the 28 day

cycling vs. steady use of TOBI or Tobramycin. Some clinics (I think, more so

outside the U.S.) prefer to continue with Tobramycin for a longer term. At

our clinic, if the Tobramycin is being used to combat Pseudomonas, the

general protocol is to prescribe the inhaled Tobramycin until the patient

has 2 sputum cultures, three months apart, clear of pseudo.

There is still much research needed to know what is best.

M