Tobi Usage

[anonymous]

Hello all, I was wondering if TOBI is good for everyone with CF or there are some who may not benefit from it. Are there cases who don't use the TOBI and why?

 

[anonymous]

Hi, In answer to your question, I'm guessing not all CFers use TOBI. I used to & I can say that it did wonderfully with me. My lung function slightly improved after being on the TOBI. However, I'm not sure why, but after a couple of years, I noticed a shortness of breath (SOB) about half way into a cycle of TOBI and it was almost oppresive, so I discontinued use. It could be that I have a secondary infection going on too. I'm starting IVs today, so maybe I'll get brave after IVs are done & try TOBI again to see if I can tolerate it better.Other than a raspy voice initially, I don't remember any other side effects (other than being SOB, of course).I hope it goes well with you if you decide to start it.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

It is my understanding that TOBI is commonly used for cf patients with pseudomonas. My son uses it and it def. helps. Jo Ann

 

[Liza]

Hi, My daughter used to use TOBI. We finally had to stop because after a couple of years she complained of a constant sore, raspy throat. They told us that some patients develop a sensitivity to TOBI after a while, others don't so they let her quit and she changed over to Colistin. My other daughter doesn't use TOBI on a regular basis. She's been on it twice. Both times she complained that she couldn't breathe when doing it. I think she just wasn't able to get used to it. We change from using a Pari Neb to the cheapie acorns they use in the hospital. She was able to tolerate it enough to get through it. Liza