Tobymyacin inhaled - shortness of breath?

Posted by barbfit @barbfit, Feb 20, 2024

Has anyone been on Tobymyacin that is willing to share their side effects? I am on my second try. I seem to xperience severe shortness of breath with it. If you have have been on it, can you tell me if you had this side effect and to what extent? I'm trying to figure out how much of this is a symptom of my pseudomonas versus the Toby. Thank you!

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Thank you so much for the information. My doctor is out today, I will call on Monday and check if she will do the injectable medicine. Thanks again Kate.

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@alleycatkate

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

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To Clarify: When I say using the injectable Tobramycin instead of the Tobi, I mean AS AN INHALENT, not as an injectable form.

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