Sorry I have so many questions...

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JennifersHope

New member
Me again!!!!!!!!!!!!!!

I am really sorry that I am posting all over the place with questions.. If you want me to tone it down I will for sure... I just seem like a fish out of water lately... As you know from my previous post I am on a serious amount of antibiotics and I am experiencing dizziness and fullness/pressure in my ears, after talking to a friend, he pointed out that I am on Tobra more times a day then he is used to seeing. I am taking 190 Mgs every 8 hours along with Zosyn and Zyvox. What he said was that Tobra is not usually given that many times a day cause it is so bad for you.. then in thinking back I have never been on Tobra more then twice a day...... and never on a dose higher then 160 mgs at one time...

So my zillioneth question is.. What dose do you guys usually go on and how often do you do it.??. I am sorry again I don't want to be a pain, but I don't really want to go deaf either....and it seems like the dizziness and pressure is worse at night....then in the am it is gone so I don't call the doctor...

Thanks
Jennifer
 
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WinAce

New member
Twice or even ONCE a day. I think my dose last time was 160 MG twice a day. Alternatively, I've had around 300 MG once. Three times a day seems to be way, way overdoing it. No, you DON'T want to go deaf from it, or damage your inner ear so badly that you can't balance yourself, so please be careful. (And that's even ignoring the life-threatening toxicity it's associated with, like doing a number on your kidneys.)
 
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anonymous

New member
Hang on....you guys are talking about tobramycin iv? Iv been on that a good few times (and am on it now) and I've always taken it 3times a day. Initially, i used to get dizzy and light-headed with it every dose, but it seems as i've gotten older I've got used to it as I dont feel these side effects anymore..

Shamrock, x
 
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luke

Guest
jennifer,

I usually take 1gr/1 day. So your dose is not really that high. As as always make sure you get your peak/trough done so your levels are in range. Some doctors have preferences on drug frequencies maybe your doctor just prefers Q8 doses. I prefer QDay because I with work my IV's and it frees up more time.

My CF clinic always have me to hepatic panels Q week when I am on tobramycin too.


Luke
 
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WinAce

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Winace, you said it has longterm effects? Is is bad for you?
Shamrock, x<hr></blockquote>

Extremely so, when administered repeatedly. Mostly, it'll cause temporary damage to the ear (which affects hearing and balance). That can progress to permanent when it happens several times, leaving you deaf or feeling like you're in zero-gravity.

Then there's the kidney damage. You'll get blood tests to monitor the IV dose so you don't kill off your kidneys, but they'll eventually succumb to the drug, if you use it enough.

Then there are assorted side effects. For instance, I've experienced nausea so severe, I wound up dehydrated from it or Merrem (I was on both at the time). So, It certainly is bad for you. But it's like chemotherapy: The alternative is dying, so you'll let them shoot you up with poison.
 
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thefrogprincess

New member
Have you talked with your doc?!?! Do it! NOW!!!! Even on the weekend you should be able to speak with an on call pulmonary doc. Tell him/her that you are concerned about dosages being to high/frequent. Don't let this do anymore damage then it probably already has!
 
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spicyone18

New member
I think when I am on Tobra I am not sure what the dosage is but I normally do it like every 36 hours. Which when reading everyone elses posts seems very odd.
 
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JennifersHope

New member
I am going to get a peak and trough drawn tomorrow.. to know for sure.. I did call my home nurse which was a huge mistake because they were totally useless.. I should have just went with my CF team since they are so great and always there for me anyway....

What I have discovered is that none of us will be on the same dose or time frame. It goes by your weight and your kidneys ability to process the med. When I was in the hospital I was on Tobra every six hours which they found my kidneys could not process it and my peak was way to high, so they spread it out to every eight hours.. and redid my peak and trough level.. My last peak and trough showed that my kidneys were able to process 190 mgs of TObra every eight hours and still be within a theraputic index (range that will kill the bacteria and not kill my kidneys) This could have changed by now, so that is why they redo the levels weekly...

Each one of us is going to be different because we are metabolize things differently....I am still very concerned about my hearing and I want to stop the Tobra just to make the ringing and dizziness stop but I know I can't do that.. Just wish I Could...

Anyway, thought I would share what I found out.. and THANKS AGAIN AND AGAIN AND AGAIN FOR ALWAYS ANSWERING MY QUESTIONS....

Jennifer
33/w Cf and Addison's
 
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anonymous

New member
Generally they dose you accoriding to your body weight and then adjust according to the trough measurement. (They rarely do peaks on me anymore.) Still, I've had my dose reduced just because of the problems you're talking about -- even when the numbers were "normal." Ace is right. You don't want fried kidneys (unless you're in a Chinese restaurant) or hearing loss. Also, it seems we tolerate these meds less well with age and after repeated doses -- i assume because our kidneys are becoming less efficient; correct me if I'm wrong -- so make sure your doc pays attention to your symptoms and not just your numbers!

Q
 
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Lilith

New member
Funny, I'm currently on Tobra right now! I'm doing 155 mg's every 24 hours. It usually doesn't give me a problem. Sometimes my lips will feel a little tingly after doing it (I have no clue why), but I've never had any other side effects. It IS dangerous, though, so make sure your levels are okay. I remember one time I had to get a peak and trough done three seperate times because they couldn't get it right!
 
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WinAce

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>You don't want fried kidneys (unless you're in a Chinese restaurant)<hr></blockquote>

Speaking of which, does anyone else think shark fin soup is VASTLY overrated? I couldn't believe people actually considered it a delicacy. It tasted like boiled sandpaper and cartilage.
 
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JennifersHope

New member
THe grossest thing I ever ate was cow brains.. Yup I still gag when I think about it. I was only 17 and I lived on my own and my landlord who is from Egypt invited me over for a party so of course being the social butterfly that I am I went... I dove write into the food... and said hmmm what is this I am eating and my landlords mother pointed to her brain.... ahhhhhhhhhhhhhhhh Fried Cow brains... tasted like flour.. but the thought alone still makes me gag all these years later..........


Jennifer 33 w CF and who hates Cows brains.... I do like liver though...
 
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Mockingbird

New member
Shark Fin soup is popular because it's supposed to be good for.... um, potency. =-)

Edit, I should say, *was* popular because it *was* supposed to be good for potency. Now, it's just a sign of wealth and prosperity.
 
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Diane

New member
Hi Jennifer,
When i go on iv tobramycin, i get 2 gm 3 times a day. I have had one time when i had problems with dizziness with it and the dosage was lowered and it went away. Hopefully you will get to the bottom of it soon <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
As mentioned already-- YES, tobra has a few really awful side affects. I know a woman (w/CF) who has gone completely deaf from it.

...and in my case, while my bugs are really receptive to tobra treatment, unfortunately I can no longer take it because of past toxicity issues which sent me into kidney failure. I've tried it twice since the initial renal problems and each time I immediately slid into failure again.

I guess what is more unfortunate is it could have been totally avoided if the specific doctor who prescribed it at the time had listened to me when I said the doses he decided to give me were too high. Huge mistake on his part, and it is going to affect me for the rest of my life.

Maybe the dose you are on (180mg, if I remember right) is fine for you. Just make sure your ears aren't ringing out of control, and make sure you're getting your tobra levels checked frequently.
 
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JennifersHope

New member
Thanks again for the input. My CF nurse emailed me and told me stop the Tobra as per doctors orders until I see them tomorrow. She said I was on it close to two weeks anyway..(again she was back to me within two minutes really amazing).. I just hope I didn't screw myself because I am still not feeling better, in fact I feel almost as bad as I did right before I went in the hospital, so I hope coming off to early doesn't effect that...


Thanks again,

Jennifer
 
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