Does anyone use inhalation Tobramycin (Tobi)

Yes, tobramycin caused shortness of breath and got so bad I had to quit using it. The doctor said it was bronchi spasms . I was very disappointed because it really knocked out the pseudomonas.

Thanks Maryjane! Yes, Tobi does work well knocking out the pseudomonas. I’ll have to check with my doctor in regard to bronchi spasms. I had used it years ago also and it affected my hearing that I now wear hearing aids. A small price to pay to be able to breathe and have less infections. Did your doctor replace it with another medication?

I have been told that Cayston is now covered by Medicare for NCFBE (non cystic fibrosis BE). It is an alternative to Toby and may not have that side effect.

Just a thought-do you use albuterol when you’re short of breath? Might it be helpful to pretreat with it? Possible questions for doc.

These conversations are helpful to me. I’m not on Tobi, but doc gave me option after I had positive culture for pseudomonas putida. I opted to watch and wait > a year ago due to hearing problems with that class.

Linda, I am on the same regiment of Tobi. I pretreat with albuterol & 7% saline solution. No pseudomonas in 6 months. I have never had any shortness of breath.
My only complaint is the 60 to 90 minutes each morning and night for the treatment along with all the hacking and coughing.
Good luck
Tom

Irene. I've dealt with pseudomonas A. for over 5 years and was treated off and on with Toby. Apparently the pseudo is colonized and the coughing I get when doing the Toby really wears me out so I'm currently off Toby. Not taking any oral antibiotics either. I'll do some reading about Cayston but wanted to send this question on to you. Does Cayston treat pseudo? Thanks much. Faye

Yes Cayston is specifically for Pseudomonas Lung infections. Up to now it was only covered for people with Cystic Fibrosis but now I was told it is covered by medicare if you do not have CF but do have Pseudomonas. You can ask your Dr about it. People do find Toby very harsh and it can cause a lot of coughing and voice loss. In my case it quickly (5 doses) reduced my urine output so I stopped. Tobramycin is one of the worse for kidneys. So if you use it I would ask to have kidney function monitored. Cayston has fewer side effects than Toby or is less harsh.

Thank, Irene. I didn’t know that Cayston is now covered by Medicare. I was turned down a couple of years ago when my doctor prescribed it. Do you take it? If so, is it helping?

Thank you, Tom. I also use albuterol, the puffer not the nebulizer. Which saves me about 20 minutes. Then I nebulizer with 7% saline. And then I use the vest. But, I do the huff cough clear my lungs so I don’t cough as much. Total approx 1 hour. I’m always positive with pseudomonas no matter what I do. My next culture for pseudomonas is in April. I’d love for it to be negative!
Stay well,
Linda

LOVE Cayston!!! My 02 sat went to 99% for the first time EVER! Yes, tobi does cause some lowered 02 sat but not bad.