Is what I have TOBI or Tobramycin?

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thelizardqueen

New member
So my doctor has just switched me from Tobramycin, to TOBI. I had a mix up with my pharmacy on friday - they had decided to send me Tobramycin regardless of my prescription due to the fact that it would be easier for me to measure then the TOBI. Well I tried to straighten it out with them, and they finally told me that they would send preservative free TOBI to me today. I've recieved it, but it doesn't look like it should be TOBI. The ingrediants are as follows: Tobramycin (as sulfate) 40mg, disodium edetate 0.1mg, sodium bisulfite 3.2mg, sodium hydroxide and/or sulfuric acid to adjust pH and water for injection. It also still says that its for intramuscular or intravenous administration. I know its lacking in phenol which was a preservative in my old Tobra, but I thought that TOBI contained 300mg of Tobramycin, and 11mg of sodium chloride (sterile water to mix). Is what I have TOBI? Or is it still Tobramycin? Any feedback would be appreciated!
 
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Jane

Digital opinion leader
Liz,
It doesn't sound the same to me. Check out the website. TOBI is packaged for inhalation. It comes in the blue covered box and has premeasured ampules.
We're not doing that currently so I don't have the package to look at for ingredients.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.abouttobi.com/">http://www.abouttobi.com/</a>
 
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thelizardqueen

New member
That's what I thought. The package I have now is the same as Tobramycin (green and brown box), it definitly does not say TOBI on it. I've put a call into my nurse to see if she can fix things for me, because it seems that my pharmacy is just not listening to me AND my original prescription for TOBI. The pharmacy keeps telling me that they can't give me TOBI becuase it isn't easy to measure, but I don't understand why they wouldn't give me what my doctor has prescribed.
 
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JazzysMom

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

That's what I thought. The package I have now is the same as Tobramycin (green and brown box), it definitly does not say TOBI on it. I've put a call into my nurse to see if she can fix things for me, because it seems that my pharmacy is just not listening to me AND my original prescription for TOBI. The pharmacy keeps telling me that they can't give me TOBI becuase it isn't easy to measure, but I don't understand why they wouldn't give me what my doctor has prescribed.</end quote></div>


Maybe your Pharmacy doesnt want to order it.......I mean I am sure your pharmacy is like mine & I am probably the only one that uses it. Thats no excuse tho!
 
L

LindseyRose

Member
I remember before TOBI came out I would get vials of tobramycin and vials of sodium chloride that I had to draw up with a syringe and mix in my nebulizer. It was actual tobra for injection that I would breathe in. Could this be what they sent you?
 
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thelizardqueen

New member
I do have Tobra for injection. It says that its for IV on the side of the box. It doesn't say TOBI on it anywhere, and that's what my prescription is for. I'm just waiting for my nurse to call back. I'm hoping she or my doctor will be able to call my pharmacy and straighten things out for me. The reason I was switched was because Tobra gives me horrible coughing fits.
 
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julie

New member
Sounds like they gave you the tobramyacin to be used for IV's. Do you need a photo of the TOBI (the box and a package/ampules). If so, I can load one onto here for you.
 
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thelizardqueen

New member
Thanks Julie, but Jane gave me a photo of it. Its not what I have at all, so now I know that what I actually have is wrong. Thanks guys!
 
A

anonymous

New member
Liz
By the ingrediants you listed and your description of the box its definately not tobi, but tobramycin injection. My boys have been inhaling this for years, 40mg/ml 10 vials per box? Hope you get the pharmacy to sort it out soon! I didnt even know you could get tobi in Canada, guess you learn something new every day!
Mel
 
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thelizardqueen

New member
You can Mel, but its hard to do. Doctors need a reason other then you just wanting TOBI to switch you. Apparently here in Canada, doctors have to go through paperwork with the FDA to get TOBI for a patient. The reason I got it is because I get terrible coughing fits with Tobra.
 
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Ratatosk

Administrator
Staff member
We're the only ones who order tobi at our pharmacy, but they LOVE ordering it for us -- did notice one of the pharmacists has a brand new Audi <img src="i/expressions/face-icon-small-smile.gif" border="0"> Between that and the pulmozyme, they're pretty happy having us as customers <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
don't be fooled.... pharmacies don't make that much money on brand name meds.

they make more money (more margin) on GENERIC meds. that's why they're always trying to switch your brand name meds to generic meds.

pharmacies have something called a "fill rate" that's set by the insurance companies. has nothing to do with how expensive the med is such as TOBI or pulmozyme.

Again - pharmacies all across the US make much more money off of generics than brand names.
 
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thelizardqueen

New member
Well, after much confusion I am getting my TOBI today. Amy was right. The pharmacist didn't want to give it out because its so expensive and very rarely stocked (hence less money for them). So my doctor had to do some paperwork for the FDA to get approval for me. I am now approved for one full year of TOBI.
 
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julie

New member
Glad to hear you got it all figured out! We had to do something like that a few years ago when Mark was on the state medical insurance and was Rx'd tobi. We had to do some fighting but they finally covered it.

I forgot to mention this the other day, but if it ever happens again, and you need some ASAP, I can mail some to you. I know I know, it's a no no. But sometimes there is that need. Actually, that goes for anyone on this site... ours is 100% covered so I'm happy to ship off a few days use.
 
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Tess

New member
Liz,

The <b>"ingrediants are as follows: Tobramycin (as sulfate) 40mg, disodium edetate 0.1mg, sodium bisulfite 3.2mg, sodium hydroxide and/or sulfuric acid to adjust pH and water for injection." IS TOBRAMYCIN </b> I have a box of tobra in front of me and that's exactly what Ihave too.

Good to hear that you've gotten it all straightened out tho liz ... Keep Fighting ......
 
W

wuffles

New member
As far as I know you can get three different forms of Tobramycin...
1) For IV use with preservative
2) For IV use without preservative
3) TOBI

All of them can be nebulised. Someone correct me if I'm wrong!
 
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