Pseudomonas infections

Somebody said she hated to post about the tendon side effects of Levaquin etc because it’s rare. However please everyone don’t be afraid to post ! I it’s good to to get as much info about all these things so we can make informed decisions.
Also I’ve read that the sensitivity of our bodies to these quinolones is cumulative. I took Levaquin in 2021 and was fine, but I would have to explore all other options before I took it again. If it’s the only thing that will save my life, of course I will!

@htolan
There are other IV options. Meropenem works great while I am on it and for one week after (clears up almost all infected sputum and I feel much better) but then my sputum symptoms all come back after just one week. But I think in spite of that I get some generalized improvement from it for a longer period of a few months. I have not tried any of the other IV options due to potential side effects in my case. The Mero has relatively little side effects for me. Toby I could not do after trying it. Yes very tough decisions for sure.

I stay away from this family of drugs. I developed tendonitis but fortunately not ruptured. My mother took Levaquin and had nightmares and other nerve issues. The pain in her feet never left so she took neurontin for the rest of her life. I do not know if it’s relevant to your question but the brand name manufacturer of Levaquin discontinued it here in the United States after the FDA black boxed it. The generic manufactured by other companies remains available.

I was on Levonquin for pseudomonas. I had to be taken off as I began getting joint pain in my elbow's. The doc took me off it right away. I am sorry to say the only other treatment for the lpsudeomonas if a pic line. So i had one for 3 weeks and that took care of the psudomonas,,,,,,,for now. I can never go on the levoquin again because of this. I still have the joint pain 5 months later. It may never go away. Good luck and take care and keep me posted on what comes next.
Maureen

@irene5 @irenea8
Regarding your journey with BE and infections.
When did all the infection or BE symptoms start for you, irene5, irenea8.?
When were you diagnosed, when did the actual finding of the BE and or infections get diagnosed?
Which was found first...BE or infections?
Did you start out with a slow growing infection and with time the pseudomonas developed later?
I ask because of timing in terms of what was or was not known just a few years ago compared to what is now known in terms of the understandings and knowledge that has advanced in just the last few years.
With the little I have gathered since finding Mayo Clinic Connect, it appears much information and knowledge was not available just a decade ago, if not just a few years ago.

I think for some this history might be helpful for others to understand that are just coming on line, especially since we now have better information to be aware of that, hopefully, the new cases diagnosed find there way to via doctors and Mayo Connect.
What do you think?
Barbara

@blm1007blm1007
I wonder if having the name Irene is a liability?
In my case I got a very bad flu type virus back in 1998. At some point the coughing up of mucus that typically happens with a virus turned infection and would not clear up. One round of antibiotics helped but it built back up PLUS got C Diff. that took one year to get over. Afraid of antibiotics and C Diff so Coughed up mucus routinely once a day using breathing and position (just figured out myself). 2001 saw pulmo. Sputum grew nothing but CT abnormal with ground glass opacities. Dr said he did not know what I had and airways were still intact but he would not "rule out Bronchiectasis". Went on coughing up mucus routinely once a day for many years. Basically ok otherwise. As years went by I got worse but still basically "ok". Then In 2020 things hit a tipping point. VERY sick in a relatively short amount of time. Saw pulmo. CT revealed cysts or abscess 5 of them. One the size of a tangerine. Sputum tests did not identify anything. But Dr thought Augmentin was my best bet and put me on it for 4 weeks. It worked. He verified that I did have Bronchiectasis once the cysts were cleared up and they could see my lungs better in a follow up CT. 1.5 years later felt sicker so took Augmentin for 2 weeks but this time it did not work. So at my suggestion he tested me for Pseudomonas which does not respond to Augmentin. Sure enough it came up very positive. It is still not clear at what point the Pseudomons got in but I feel 4 weeks of Augmentin left me open to it. But I had no choice about taking it since the cysts would have killed me. That is my story in a nutshell.

@renee53
Which IV option did they use? 3 weeks is a long time.

@blm1007blm1007 Those are all good questions. I started not feeling well in 2010 believe it or not. I continued teaching till 2014 and then retired. By 2016 my son in law an obgyn decided to take a CT scan because my regular PCP thought I was depressed because I retired. By then I had complained of exhaustion for several years and just not feeling well. God bless America. The scan revealed the MAC! So my MAC journey started in 2016 even though I had had symptoms for years: weight loss and dry cough. I started with a local pulmonologist who referred me to an ID doctor who I have to this day. ( Dr. Wessolossky at UMASS). It started as a wait and see focusing on good nutrition. Then my husband and I moved to Clarksville to take care of his dad. That was a huge deal because I still had 6 of the 10 kids living at home that we had to make sure were ok. They were adults pretty much. The youngest age 18 came with us. The rest moved out and found places or we found places for them. I started with a doctor in Clarksville (ID) who sent me to Nashville. The Clarksville doctor had started me on the Big3 right away and seven days a week. Thought I’d die. It was awful for me. The doctor at Vanderbilt put me on the Big 3 only 3 days a week. Better but still not easy. Then my father in law died, and we went back to Connecticut and found a new house . My daughter stayed in Tennessee at college. So now we are July of 2017. I was back under the care of my UMASS doctors - ID and Pulmonologist. Since the Big 3 hadn’t done enough I started in a clinical trial of Arikayce in 2019 I think. That got rid of the MAC but damaged my lungs. It is a great drug although time consuming. I know there are better drugs now. By 2022 I had aspergillosis fumagatos treated with Vfend and then a more pricey one Cresemba. 18 months of that! MAC came back along with pseudomonas in 2023. I was treated for the pseudomonas with doxy and prednisone. I stopped all inhalers in late 2024 due to increased understanding I guess that they can cause infections. Again - God bless America. Then in August of 2025 my husband of 55 years died. He had sarcoid. Neither of us were smokers. I hadn’t been feeling well for months and by 12/31 /25 I was illing a lot. I went back to UMASS and a bronch was scheduled for 2/18. Murphy’s law follows me a lot - a collapsed lung had followed a robotic surgery which had shown the aspergillosis so the doc and surgeon are very careful with me. They are the best at UMASS. Since then I am recovering from MRSA pneumonia which was found in my lungs. I am feeling a lot better and have not gotten the MAC results yet, but I have gained 4 pounds ( up to 75) so that is a great sign . We shall see. It takes a bit for the MAC culture to come back. I nebulize up to four times a day with medication and take Levoquin two times a week as a precaution. So that is my entire journey with dates and drugs and a little bit more. I will be 76 in April, and this journey started upon diagnosis in 2016. Basically it started before 2016 but for actually diagnosis it was 2016 for MAC. Bottom line is being positive is helpful and having a team that truly cares. Friends , family, and the good God above are key. As long as we all keep putting one foot in front of the other as much as possible we will survive this! I am blessed. Irene5

Also, and I forgot because I had too many kids texting me as I wrote that - the pseudomonas hit in 2023 after a bout with RSV . That’s the same year they really started talking about my bronchiectasis which has gotten progressively worse. So MAC first followed by Pseudomonas and bronchiectasis together. I’m guessing the BE was there all along and certainly after my lung collapse but not significantly an issue till 2023. (irene5)

@irenea8 Thank you for the reply. My thoughts were, considering all you have responded to in posts, that you have been dealing with related issues for a long time. Nearly 28 years it appears, that is a long time, long journey.
I hear you, "So at my suggestion he tested me for Pseudomonas ." Talk about having to be your best advocate...and researcher.
"That is my story in a nut shell." It may be your story in a nutshell but the story in reality would never fit inside a nutshell...it's to big a history with many difficult and questioning times that you probably had to face.
I would imagine testing has improved since 1998, early 2000's.
My symptoms began in 2020 ..It was welcomed along with all the Covid precautionary measures put in place at that time. BE diagnosed in 2022.
Thank you again for the detail and time factor information.
Barbara