TOBI

[BaylorCrew07]

Hey everyone,

I was diagnosed a few months ago w/ CF and I have just started using TOBI a few weeks ago. I was curious to see if anyone else experienced hoarseness, or loss of voice as a side effect? If so, I was also wondering how long it lasts for? I coach a swim team, and it's hard to talk over so many kids when I don't have a voice! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Thanks!

Debra
20/f/wcf

 

[Mockingbird]

Yep. It usually goes away on the off months.

 

[anonymous]

Hello Debra
how are you? I doing ok, I going to inhlate Tobi the whole summer now, other wise i use to inhlate 28 days and 28 days off.

somtimes i loss the voice when i inhlate tobi.and i use to have it till tobi is finished or 1 week after it... but tobi have worked very well for me. i´m very happy for it..
you think tobi help you?


take care /Marie 20 w/cf

 

[JazzysMom]

Absolutely. In addition it makes me naucious (Spelling?) so I have to make sure I have something in my stomach. I have no problems with any other aerosols (Albuterol, Pulmicort, Pulmozyme).

 

[CheerColl]

I know that when I am on TOBI and I yell, that causes me to lose my voice...however, if I try not to raise my voice while I am on it, its not quite as bad!

 

[anonymous]

Hi,
when I used Tobi, my voice went away totally and even after I stopped inhaling Tobi, my voice didn´t come back and no doctor knew what to do. I visited another doc because of another problem and he told me to try "Voltaren" tablets, because they help, when something is swolen. And - surprise - it really worked! I noticed after taking the first tablet, that my voice came back. I don´t know, if you have Voltaren in the USA, but it contains Diclofenac.
I did not inhale Tobi again since then.

Uli,42,Germany

 

[anonymous]

They told my daughter to suck on a piece of hard candy while doing her treatments. Then to drink a carbonated beverage right after doing her treatment. This has worked very well with the TOBI and Pulmozyme which also caused my daughter to lose her voice.

 

[HollyCatheryn]

You can look up the side effects for TOBI or they might be inserted with your meds. The most common side-effects are hoarsenesss and tinnitis (buzzing or ringing in your ears). In the hospital they have a special nebulizer that has filters on the different out-flow openings. Using this neb helps cut down on the hoarseness for me. You can look into that.

 

[Bubbalove]

My boyfriend says it definitely does.. his was so bad once, he sounded like the godfather.. we got a giggle out of it.

It lasted a couple of weeks.. drink some nice tea with honey to soothe your throat..

 

[blindhearted]

Yep...I have hoarseness right now. The more I talk or sing it gets worse. So try not to talk too much. Maybe get something to amp-up your voice for the swim team. It can last for a few weeks and get better but sometimes it wouldnt get completely gone until it was time to start TOBI again. Try what Bubbalove said...sip hot tea (no caffinee) w/ honey...and add a drop of lemon juice too. It seems to help soothe.

 

[JohnnaMarie]

I just started Tobi yesterday and I know in the past the docs always told me to rinse my mouth out after each treatment so that i dont lose my voice. It is already getting horse though, because I am coughing alot more with the Tobi this time.....hopefully this will help me get all this stuff out of my lungs. I am not quite to the month on month off dosing yet...cross my fingers.