Tobymyacin inhaled - shortness of breath?

I was on Tobramyacin for a year and had virtually no side effects and it did the job.

Thank you for responding VMorton!

Hello, my doctor prescribed Tobramycin inhaled solution, but it is very expensive . Medicare will pay some, I have to pay $331 out of pocket. Anyone has any idea where I can get the medication cheaper.
Thanks in advance🙏

I've been on Tobi inhalation nabbing since last October for Pseudomonas a. in lungs. It has been hard to take for me, but hopefully it is helping. I discovered the inhaler itself was causing many problems and I just received a Pari LC Plus device which makes the whole process much more tolerable. I do cough a lot with it, but I guess to be expected. Mine is covered mostly so cost is also tolerable.
I CAN tell you, it gets easier. My first few months were very hard to tolerate but last month with the new Pari has been much better, so hoping for an easier time. Good luck to you and keep at it.

I'm sorry to hear that. The medical expenses dealing with this condition is a nightmare. I have BCBS. Retail Toby is $3,000 but I get an insurance discount bringing it to $1,000. But after I meet my high deductible plan, it will be $200 for 30 days. I tried to find RX discount card savings, but it didn't list Toby. I'm not on Medicare, so I can't help. Not sure what Medicare supplement you have, but I would take the most expensive next election because you'll need it. Good luck to you!

Thank you for the info pegs! Coincidentally, I am looking to buy a new nebulizer. I feel like the one I have is not dispensing adequately. So about how long are your treatments? Thanks!

Thank you so much for your response. It is so discouraging. I am retired and don’t have too much extra money to spend.

HI Barbfit,

With the new Pari nebulizer it took about 15 minutes. The old one was at least 20 minutes, usually 25. None of this is easy, but I keep at it per/Dr. instructions.
I wish you well.

You too! 😊

Hello @foonfoon65
I had the exact same experience picking up my script for Tobi at the Pharmacy. I use a pharmacy located across the street from our hospital with a very knowledgeable pharmacist. He said you can either pay the $$$$ or I can give you a prescription for Tobramycin Injectable and use it as an inhaled treatment. He showed me how to break it down and gave me the "pull" syringes. It cost me $ Nothing with my insurance. This is what I read they do in hospitals to keep expenses down. There are many articles on the internet about substituting injectable Toramycin for Tobi. As far as I can determine, it seems safe and efficient. You might call your pharmacist and see if they will do this for you....but First, please go on-line and read up.
I did the Tobramycin along with Cipro. Was given a month-long Tobi script with the 10 day Cipro script. I was only able to do the Tobramycin for 2 weeks and that was pushing it. It made my coughing awful, my trachea was raw and I was miserable. I went back to my Dr and told him I had substituted the injectable for the Tobi and he just kind of shrugged. I also went to the pharmacist and asked if the coughing and throat issue was due to using a generic form and that I was only able to tolerate 2 weeks. He laughed and said that was pretty darn good in his experience.
Anyway....I finished the two back in mid Sept. and I still feel great. Hope this helps...I am happy to answer any questions and you are welcome to PM me. Read up on it and I think you will feel comfortable with it. (Maybe not) ? That is my only suggestion for getting the price down....and it gets down to Zero. I splurged and got my pharmacist a gift card dinner to his favorite restaurant as a thank you.
Good luck. PS...maybe a call to your Dr to ask him to prescribe the injectable to be used as a substitution for the Tobi might help and I would imagine would make you more comfortable.
Best Wishes,
Kate