Have Bronchiectasis, recently diagnosed with pseudomonas

Posted by shiell @shiell, Feb 25, 2017

I have read everything today that I find on this site. I do not know anyone else with problem. I have written down everything that stood out which I can follow up. I am beginning a 28 day therapy with inhaled tobramycin. I am 87 and realitively active. Caretaker part time for spouse with end stage COPD. Thanks for being here.

Welcome to Connect, @shiell. You’ve found a great group of people here in the MAC & Bronchiectasis group. Kudos to you for having read everything the members have written!
Let me introduce you to @pamelasc1 and @jentaylor who also have or had pseudomonas. @windwalker has experience with tobramycin.

You may wish to also join the main MAC/bronchiectasis discussion here: http://mayocl.in/2cwX36M
We look forward to getting to know more about you.

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I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My speutem was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

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Let me mention posts from two different MAC members .. hope it helps! Hugs to all! Katherine

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

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@tay4rake

I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My speutem was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

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@shiell and @tay4rake, this is really good information for our Mayo Connect .. especially the fact that inhaled Tobymycin worked when antibiotic pill form did not .. good info! Thank you both .. and good luck! Thanks for jumping in! Katherine

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@tay4rake

I too was diagnosed with pseudomonas after having MAIC two times. The first treatment for pseudomonas was a 14day Rx of Ciprofloxacin. I felt better immediately and the symptoms went away. Within 2 weeks of finishing my Rx the symptoms started to come back. My speutem was retested and I still had pseudomonas. I was prescribed the Tobymycin Inhaler for 30 days. I have very good insurance but my out of pocket was over $1000. It was worth every penny. The Tobymycin worked and I have been feeling major symptom free since I finished it May 2016.

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Healthwell is a charitable organization that helps with your co-pay if
you fall within a certain financial bracket. They helped pay for my tobramycin.
Am super grateful for it. I do donate voluntarily back to them some $$ to give
back and help replenish their funds. Hope this helps. Also, if any of you out
there want to donate to them, it is a tax deductible item. Plus, it helps many
people, especially those with Cystic Fibrosis.
 

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@colleenyoung

Welcome to Connect, @shiell. You’ve found a great group of people here in the MAC & Bronchiectasis group. Kudos to you for having read everything the members have written!
Let me introduce you to @pamelasc1 and @jentaylor who also have or had pseudomonas. @windwalker has experience with tobramycin.

You may wish to also join the main MAC/bronchiectasis discussion here: http://mayocl.in/2cwX36M
We look forward to getting to know more about you.

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I have had three diff organisms infect my lungs. MAC, pseudomonas, and
arugenosis (sp) ???? I am on tobramycin bi-monthly for an indefinite period.
It’s good stuff!  Terri M.
 
 

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@katemn

Let me mention posts from two different MAC members .. hope it helps! Hugs to all! Katherine

Member @pamelasc1, Pamela, and @jentaylor My cough got much worse and I was coughing up stuff I could not believe – my doctor had the sputum tested for pseudemonis, and that is what I had, above and beyond the MAC – has to be treated with Levofloxacin. Once I got on that, it cleared up within 3 weeks and no more coughing up terrible stuff – you may want to get a test for pseudemonis, just to rule it out. The sputum had a distinct taste, smell & color (dark gray & dark green) or color was off white, gray maybe a bit greenish, but mostly grey – and very thick and mucousy.
http://www.medicinenet.com/script/main/art.asp?articlekey=20161

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Funny, only we could speak freely over the color of mucous! Greenish
is def a sign of trouble.
 

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I am new to this site but it is helpful to hear of others that are experiencing the same thing.
I have pseudomonis too but am unable to use the tobramycin as I am apparently allergic to it. It causes
tightness in my chest which makes it harder to breath. I hope they come up with something new soon.

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@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

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@luvocean

I am new to this site but it is helpful to hear of others that are experiencing the same thing.
I have pseudomonis too but am unable to use the tobramycin as I am apparently allergic to it. It causes
tightness in my chest which makes it harder to breath. I hope they come up with something new soon.

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I have a friend that could not tolerate tobramycin also. He has better luck
with a drug called ‘calisten’. It is also a nebulized antibiotic.
 

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@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

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BTW Katherine ; pseudomonas A. was the last bug I got rid of after several
months on Toby. I know how rotten you were feeling.
 

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@katemn

@luvocean, do you have a first name? I also was recently diagnosed with Pseudomonas Aeruginosa. Dr. Timothy Aksamit at Mayo Clinic, Rochester MN first line of defense BEFORE Toby prescribed for me: Cipro 500 mg .. 2x per day for 28 days. QUESTION: has anyone suggested that to you? Please speak to a GOOD Infectious Disease doctor ASAP because Pseudomonas Aeruginosa is NOT a bacteria to be messed with .. it can be potentially very serious if not treated.

Just google it. I am BIG on “due diligence” .. educating yourself .. being your OWN best advocate! Keep in mind .. NOBODY cares about your body as much as YOU do .. if you don’t take good care of your body .. who will?? Please keep us posted! Sending you a hug! Katherine

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Hi KatemnThankyou for responding. Ive been on sub q infusion since 2009 and have run the gammut of all and now on ivig gammaplex ea month.Had it twice but getting worse. Cipro 500 was working last year but now doesnt. Now on Leviquin 2nd time in a row bu still ciughing and breathless. Also on 25 mg prednisone and Strong nebulizer meds twive daily. Last year diagnosed with pseudo, thus year couldnt find it with sputum. Treatmt with iv Astreonam(?) last year and trying to get it again but its hiding. Just mild(? )case of microbacterium (no treatmt) recommended by ID dr. Thank You again.Breathless but hopeful.Connie

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