Terrible Tasting Tobi

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anonymous

New member
Ok, perhaps I'm a wimp but I just got started on Tobi, which I can hopefully stay on if it doesn't cause me to cough up blood. I just had a month of IV's and the pneumonia is gone in my left lung but my PFT didn't budge. Which was really disappointing. So my docs didn't know what else to do for me, can't do IV's longer because of the possible damage to my liver/kidneys. Can't do oral meds because I'm allergic to anything that would work. So Tobi was the last hope. It didn't feel great that this was the last option but what else is there for me to do?
So here is my deal. Tobi tastes like crap. It's not too bad as I breathe, other than a nasty after taste in the back of my throat, but when I go to swallow. It's horrible.
Any recommendations to help with the taste? I heard of one of my friends putting a jolly rancher in her mouth, not my favorite candy but if it helps...I'll do it.
Does tobi make you cough afterward? I noticed after my first dose that I did cough more than what I typically would. I really don't know waht to expect with this.
Thanks for any advice you're willing to give.

~KELLI
28 w/ CF
 
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anonymous

New member
Hi,

if you get hoarse and if it doesn´t go away even after you stopped inhaling Tobi, try Voltaren tablets, that helped me some years ago.

Uli,43,Germany
 
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JazzysMom

New member
Tobi is quiet nasty tasting......some days I tolerate it ok & others I have to sip water or suck on a candy thru the whole thing. People react differently to Tobi. For the most part I tolerate it well, but there have been times especially when my airways were real sensitive to spasms that it caused a problem, but at those times everything pretty much does.
 
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Allie

New member
ummm TOBI, gourmet. Ry used to drink a soda throughout the whole thing because it was so bad. That's the only tip I have for you.
 
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Emily65Roses

New member
I don't use TOBI anymore, for that reason. It always made me gag and/or throw up. You need a new med, I take it? An antibiotic? Did you and your doc ever talk about inhaled Colistin? I'm on that one starting Feb, and that's much easier to tolerate for me than the TOBI ever was.
 
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JennifersHope

New member
When I first started Tobi.... the very first inhale I was on the computer with my friend John..... he told me to try to think of it as a bitter coffee.... to prepare me for the taste.....I don't know why but since then I don't mind the taste when I am inhaling it..just when I am done.. I spend a good half gagging...and feeling like my throat is closing ...I ususally drink a lot of fluid right after...and I never lay down right away either.... Sometimes a carbonated drink works well too..

I also used to lose my voice but I haven't not lost it yet this time around....I thought I heard somewhere that they were going to have a hand held inhaler for Tobi... and that soon we wouldn't have to spend sooooooooooooooooooooooooo much time nebbing this stuff.... anyone hear???
 
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anonymous

New member
I started TOBI in November. After the first treament I thought this is going to be the longest 28 days of my life. About half way through the month I stopped gagging. My routine is always have a glass of water waiting in the washroom when I am done so I can gag and rinse. When the first month was over I was sooo pleased. My next appointment was five days after the finish on TOBI and they made me start it again. OUCH another horrible 28 days. The second month was not soo mad. Hopefully we irradicated the PA and I won't need Tobi again. I have started Oregono Oil and am hoping that this will also help fend all the bugs off.

C
 
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anonymous

New member
Thank you for your suggestions. I'm sitting here with my Tobi right now and my poor dog is sitting on my lap. I hope it doesn't smell as bad at it tastes.
I will try a soda following since I don't have any candy to take right now. I haven't been on Colistin but it sounds a lot better, taste wise. How is it financially? Cheaper than Tobi by any chance? Just hoping.
I'll just try not to swallow for the next 20 mins. Oh yeah, I have a Pari Trek, how long should this take to neb?
~Kelli
 
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JennifersHope

New member
Hey Kelly..

I am sitting here doing my Tobi as well.. I use the Pari Plus neb cup and the DeVilbliss Pulmoaide.. It takes me about 20-25 minutes..but I think I need a filter change because it used to go in a little faster....My albuteral takes about 10 minutes and my Pulmozyme takes 7 minutes but who is counting....

.I stopped doing my Tobi right after my Pulmozyme because what I find is right after I finish Pulmozyme, I have to clear my lungs, and if I try to sneak a Tobi treatment in.... before my lungs clear, it is wasteful if you know what I mean... Now I wait at least 20 minutes or more to do Tobi... when I have the time...

I also have a machine in the car.. so I do my AM treatments.... finish getting ready and then by that time I jump in the car and start my TObi....

I too have my soda at my side....

Hope you are doing okay with it for me the most overwhelming thing when I started TObi was the TIME IT takes to do it....

Jennifer
 
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anonymous

New member
My husband has said the only that helps with the bad taste is soda. He always drinks Dr. Pepper or Mr. Pibb while doing Tobi. Hope that helps!
 
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anonymous

New member
I guess I never thought Tobi tasted that bad. I did it for a month back in august, and a few other times, but now I do inhaled Cephtaz and let me tell you i dont think there is anything worse. Cephtaz smells like cat pee to begin with, and tastes just as I imagine that would taste. When I first started it I didn't know how I was going to handle it.....

Caitlin
 
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JennifersHope

New member
Oh you for sure have us all beat... I am doing IV Cephtaz aka Fortaz and it really does smell just like cat pee....In fact....some of my IV leaked today..and we have company and my stepmother went around telling everyone it is my medicine and not our cats...BUT YOU LITERALLY WOULD SWEAR TO GOD IT IS CAT PEE...

I CAN NOT IMAGINE INHALING THAT..... I CAN'T EVEN PUT IT CLOSE TO MY FACE WHEN IT IS IN IV FORM.........

jENNIFER
 
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southbound

New member
I found TOBI to burn at first, but it really didn't bother me that much. It doesn't taste like pie, that's for sure, and it's kind of like inhaling gasoline, but it's not as bad as eating tongue or something. It still doesn't bother me.
 
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Emily65Roses

New member
Oh man! Jennifer! I have ALWAYS compared Ceftaz to cat piss. Always always. And what's awful is that because my port is in such a main vein, I can taste it when it's infusing. *vomit*
 
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anonymous

New member
yes!!! it is horrible. but with cepacia it is like the only thing in MONTHS that has worked and *knock on wood* it has been working WONDERFULLY. it is so gross though, i am used to it by now but in the beginning I was gagging.

caitlin
 
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JustDucky

New member
Ewww, the infamous Fortaz!! I once spilled some on my shirt and had to change it, it reaked of cat piss!! There is nothing in the world that covers that smell LOL! I could jump into a vat of perfume and it would still be there....As far as the TOBI, I mentioned on an earlier post that I have my nebs fed through an adapter in my vent so...no nasty tastes for me!!! But, I can taste my IV meds though...even when I flush them with the saline, such an odd taste, hard to describe it. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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JennifersHope

New member
I taste the Picc line flushes when they go in.. I don't taste the IVs thankfully...

Today at church.. I have a friend who is kind of nutty fun... and I happen to be doing my Fortaz IV and I unhooked it and had her smell it..now I swear I didn't say a word of what I thought it smelled like and she said ewwwwwwwwww CAT PEE.....

It is true Jenn Daffy you can't get it out ....... of anything my cute picc covering is ruined.... and it makes your body secretions smell like it too.... I feel like a bag lady...... that has 20 cats... I am applying deodorant all day.. lotions and well, I was crying today..and my tears smelled like it as well... which of course made me laugh....

I think I am going to research the chemical ingreds in it and compare it to cat pee... and see.... I know for some cancer drugs that actually use mouse urine......and well we all know our Pulmozyme is partly derived from chinese hamsters ovaries DNA so you never know....

HMM Maybe I don't want to know...

Ha HA

Jennifer
 
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JustDucky

New member
Ohhhhh I forgot the smells when you sweat, yeah I can smell it when I sweat too...and not to be gross, as well as when I go pee. I had to laugh when you said that you smelled like a bag lady with 20 cats LOL! I change my dressing if I get Fortaz on my Medi port, it turns into a big scratch and sniff when IV's like that gets on that. Rocephin is another gnarly one as well as Mefoxin...nasty nasty stuff! When I was a nurse, I was mixing the stuff and I spilled it on on my scrubs. I had to change my entire scrub outfit because the poor patients were complaining that I rolled into a cat litter box! So, I had to go to maternity and grab one of their scrubs and shower to get the rest of the smell out. Unfortunately, my sneakers didn't fare so well, I wound up buying new ones LOL! Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
P.S...I hope you are doing okay Jenn, I know you are going through alot, thankfully the IV's are done tomorrow!
 
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