1. < MAC & Bronchiectasis

Tobramycin

Posted by luvocean @luvocean, Dec 13, 2017

I'm sorry I haven't been part of the discussion lately. I was finely given a chance to try Tobramycin after being tested for an allergic reaction. I tried it for about 3 days and had to stop. It caused so much congestion that I could hardly breath. Now I have a terrible cough and infection. I am so depressed!

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luvocean | @luvocean | Jan 4, 2018
In reply to @windwalker "@luvocean, I read back over some of your older posts; seems you have been battling infection..." + (show)
@windwalker

@luvocean, I read back over some of your older posts; seems you have been battling infection since last July. Are you still battling the pseudomonas? I see that you have only been on the Cipro for three days, it hasn't had enough time to get into your system and work yet. How many days are you prescribed to be on it? Ideally, it should be for at least 10 days, 14 even better. I got this from the NTM conference. It was stated that longer duration on the the short term antibiotics is better. I hope you get to feeling better soon, it sounds like you have been through a lot.

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Yes. Pseudomonas.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 2018
In reply to @luvocean "Now the clinic that tested me for allergy and my ID Dr. Both want me to..." + (show)
@luvocean

Now the clinic that tested me for allergy and my ID Dr. Both want me to try it again! I'm so afraid.

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@luvocean, Have them test you to see if you still even have an active pseudomonas infection before continuing to take more meds. Also, read over the 'Re-infection' thread to make sure you are not inadvertantly reinfecting yourself.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 4, 2018

@luvocean, would you say that you feel just as sick as you were on Dec. 13, or do you feel like you have improved somewhat?

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luvocean | @luvocean | Jan 7, 2018
In reply to @jkiemen "Is that an expected response to the drug? Have you been treated with the other agents?" + (show)
@jkiemen

Is that an expected response to the drug? Have you been treated with the other agents?

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My Dr.s want me to try it again. What were Katherine's symptoms.

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luvocean | @luvocean | Jan 7, 2018
In reply to @windwalker "@luvocean, I am sorry that you are feeling so badly right now. I hope that your..." + (show)
@windwalker

@luvocean, I am sorry that you are feeling so badly right now. I hope that your dr. can put you on an alternate drug to get you to feeling better by the holidays. Were you on anything else prior to the toby?

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I didn't know you can inhale Cipro! I know that when I give a sputum sample the Dr has said that the pseudo is resistant. Maybe the inhaled version is better. I will mention it.

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luvocean | @luvocean | Jan 7, 2018
In reply to @jenblalock "So sorry you are feeling bad and that Tobramycin isn't working. Is Tobramycin the same as..." + (show)
@jenblalock

So sorry you are feeling bad and that Tobramycin isn't working. Is Tobramycin the same as Amikacin do you know? When I started Amikacin inhalation I lost my voice entirely for a week or two and had a sore throat. My voice came back after a couple of weeks but was hoarse. After I stopped my voice went back to normal. I'm so sorry you are now resistant to most of the antibiotics. Best to you.

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Rthey want me to repeat Toby! Scared.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9, 2018
In reply to @luvocean "Now the clinic that tested me for allergy and my ID Dr. Both want me to..." + (show)
@luvocean

Now the clinic that tested me for allergy and my ID Dr. Both want me to try it again! I'm so afraid.

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Here is the link to the reinfection link that Terri referred to:
- How To Prevent Re-Infection of MAC/MAI https://connect.mayoclinic.org/discussion/how-to-prevent-re-infection-of-macmai/

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luvocean | @luvocean | Jan 17, 2018

It's a month and a half since my complaint about terrible side effects using Tobi in the nebulizer (I have Pseudomonas). I read National Jewish Health and they advised using a different nebulizer and compressor so I did just that. I used it twice with the nurse at my doctors office and now I am doing great after 5 treatments. so far I have had no side effects.

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 18, 2018
In reply to @luvocean "It's a month and a half since my complaint about terrible side effects using Tobi in..." + (show)
@luvocean

It's a month and a half since my complaint about terrible side effects using Tobi in the nebulizer (I have Pseudomonas). I read National Jewish Health and they advised using a different nebulizer and compressor so I did just that. I used it twice with the nurse at my doctors office and now I am doing great after 5 treatments. so far I have had no side effects.

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@luvocean, You just made my night by saying that you are doing great after 5 treatments. Yay! I hope this treatment continues to work for you. BIG HUG!

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Jennifer | @megan123 | Jan 22, 2018

Just started tobramyacin, generic. Starting at 160ml x2 a day. Anyone used this med for pseudomonas. When do u begin to see improvement

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