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I am using inhaled colistimethate for the first tume

Posted by lenorj @lenorj, Feb 5 4:15pm

Does anyone have experience with this med? I am being treated for a psuamonous infection. I use Toprmycine first but needed to stop because of ringing in my ears.
Can I use this med with any nebulizer? Any information would be helpful.

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mpowers | @mpowers501 | Jun 14 4:58am
In reply to @lenorj "@lenorj I have been on Colistimethate 2x a day 150 ml 2weeks and n 2 weeks..." + (show)
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@lenorj I have been on Colistimethate 2x a day 150 ml 2weeks and n 2 weeks off
My last CT scan shows a great deal of improvement in my lungs and so far my cultures have not grown anything. I find that on the weeks that I inhale the colistimeate I am very tired and short of breath. On the weeks off I feel great and have lots of energy. I will be doing g this routine u til Oct when I see the pulmonologist again. It’s not easy, but beats feeling terrible all the time!

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I'm on colistamethate every other month, every other day of that month. The doc stretched it out because I'm so prone to developing resistance. On the every other we started at 1.5ml twice daily....NO WAY! SOB! My breathing tighted up to a very uncomfortable level. Reduced the dose to 1ml twice daily, same result. Now at 1ml once every other day. Even that makes me uncomfortable, but tolerable.

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ja24 - Jeannie | @ja24 | Jun 14 9:25am
In reply to @lenorj "@lenorj I have been on Colistimethate 2x a day 150 ml 2weeks and n 2 weeks..." + (show)
Profile picture for lenorj @lenorj

@lenorj I have been on Colistimethate 2x a day 150 ml 2weeks and n 2 weeks off
My last CT scan shows a great deal of improvement in my lungs and so far my cultures have not grown anything. I find that on the weeks that I inhale the colistimeate I am very tired and short of breath. On the weeks off I feel great and have lots of energy. I will be doing g this routine u til Oct when I see the pulmonologist again. It’s not easy, but beats feeling terrible all the time!

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@lenorj - I have been on inhaled Colistimethate twice daily for two years. My Mayo Clinic pulmonologist thinks the Pseudomonas has colonized. The Colistimethate seems to help keep it at bay although I have had several flareups which required me to have PICC lines to administer Cefepime. I also have MAC, which for now, does not seem to be progressing. Five months ago I started Brinsupri and have definitely seen an improvement with the Bronchiectasis flares. I haven’t noticed any side effects with either the Colistimethate or the Brinsupri. I hope you will continue to have improved health.

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lenorj | @lenorj | Jun 14 10:19am
In reply to @ja24 "@lenorj - I have been on inhaled Colistimethate twice daily for two years. My Mayo Clinic..." + (show)
Profile picture for ja24 - Jeannie @ja24

@lenorj - I have been on inhaled Colistimethate twice daily for two years. My Mayo Clinic pulmonologist thinks the Pseudomonas has colonized. The Colistimethate seems to help keep it at bay although I have had several flareups which required me to have PICC lines to administer Cefepime. I also have MAC, which for now, does not seem to be progressing. Five months ago I started Brinsupri and have definitely seen an improvement with the Bronchiectasis flares. I haven’t noticed any side effects with either the Colistimethate or the Brinsupri. I hope you will continue to have improved health.

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@ja24 thanks for your information. It looks like I will have to go off the colistimethate, I have such cranping in my hands and legs that I almost can’t function. My breathing is very restricted even with the inhaled albuteral.

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reneemc | @reneemc | Jun 14 11:21am
In reply to @ja24 "@lenorj - I have been on inhaled Colistimethate twice daily for two years. My Mayo Clinic..." + (show)
Profile picture for ja24 - Jeannie @ja24

@lenorj - I have been on inhaled Colistimethate twice daily for two years. My Mayo Clinic pulmonologist thinks the Pseudomonas has colonized. The Colistimethate seems to help keep it at bay although I have had several flareups which required me to have PICC lines to administer Cefepime. I also have MAC, which for now, does not seem to be progressing. Five months ago I started Brinsupri and have definitely seen an improvement with the Bronchiectasis flares. I haven’t noticed any side effects with either the Colistimethate or the Brinsupri. I hope you will continue to have improved health.

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@ja24 you have MAC and take Brinsupri?

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ja24 - Jeannie | @ja24 | Jun 14 12:48pm
In reply to @reneemc "@ja24 you have MAC and take Brinsupri?" + (show)
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@ja24 you have MAC and take Brinsupri?

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@reneemc - Yes I do take Brinsupri. I talked with my Mayo Pulmonologist about it and basically he said there have been no tests on the effects of Brinsupri on MAC. But interestingly, my last sputum sample did not grow any MAC after 42 days of culturing and that has never happened over the last three years!

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