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 1, 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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It is a side effect but most don't get as bad and soon get over it.

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luvocean | @luvocean | Jan 1, 2018
In reply to @windwalker "@luvocean, I am sorry that the toby isn't working for you. It was my miracle drug...." + (show)
@windwalker

@luvocean, I am sorry that the toby isn't working for you. It was my miracle drug. What organism are they trying to get rid of with that particular drug? The first week on this drug sometimes causes me more mucous initially but clears things up after 20 days. Have you mentioned your reaction to your dr.? It would be helpful for me to know what they are treating you for exactly.

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They are treating me for pseudomonas.

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luvocean | @luvocean | Jan 1, 2018
In reply to @windwalker "@luvocean, I am sorry that the toby isn't working for you. It was my miracle drug...." + (show)
@windwalker

@luvocean, I am sorry that the toby isn't working for you. It was my miracle drug. What organism are they trying to get rid of with that particular drug? The first week on this drug sometimes causes me more mucous initially but clears things up after 20 days. Have you mentioned your reaction to your dr.? It would be helpful for me to know what they are treating you for exactly.

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I mentioned it to my ID Dr. She took me off of it.

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luvocean | @luvocean | Jan 1, 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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Yes all other anti biotics like Cipro and Cefepime which I am now resistant to and t h e Cefapime am allergic to now.

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luvocean | @luvocean | Jan 1, 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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I was on Cipro for 7 days then the ID Dr. Put me on zpak. Now I am fighting a virus on top of everything. I am thinking that the Toby might have worked if I could have made it through the 28 days if only I could have!

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luvocean | @luvocean | Jan 4, 2018

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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2 replies
luvocean | @luvocean | Jan 4, 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?

Jump to this post

I have been on Cipro which no longer works.and others like like Astreonam 2 or 3 times and Cephapime and others (allergic now).

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luvocean | @luvocean | Jan 4, 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?

Jump to this post

Yes some other drugs related to penicillin like Augmentin for pneumonia. A nurse who does all the breathing tests suggested using a special men cup with the Toby that breaks it down to smaller particles. But the pharmacy no longer sends it and no one can find it. Still looking. Its called Pari LC Plus.

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luvocean | @luvocean | Jan 4, 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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Yes Amikacin will be prescribed if the Toby doesn't work. But 1st I'd have to get over the infection it causes.

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luvocean | @luvocean | Jan 4, 2018
In reply to @luvocean "Thank you for your response. I believe the Amikacin is Astreonam. I have had this IV..." + (show)
@luvocean

Thank you for your response. I believe the Amikacin is Astreonam. I have had this IV twice and I believe it's not as effective now but haven't tried it in the nebulizer. I am on Cipro but it's been 3 days and I'm still coughing have a really sore throat. I'm sorry about your losing your voice. You must have had to write notes and use sign language when you couldn't speak.
I also have asthma besides my bronchiectasis so wonder if that's why the hoarseness and extreme congestion with sore throat.

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Guess I was wrong about this being the same as astreonam.

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