Pseudomonas infections

@blm1007blm1007
When the Augmentin did not work it was a clue that I may have picked up Pseudo since it does not respond to it. I had read that. I was surprised to learn that the prior sputum tests had NOT included testing for Pseudo. The strange thing about my journey is that up until 2020 I did "ok" with just coughing up mucus once a day routinely. I still had weight on and did ok if not great. Lived a fairly normal life. Something happened very rapidly in 2020 and my whole situation changed. I coasted along for almost 20 years without even nebulizing (did not even know about it stupid me) and then it hit big time. Still no clue why. My pulmo called it "hitting a tipping point" but that is rather vague.

@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

We’re coming into Denver right now, and I’m very hopeful.

@irene5 Did Doxy clear PA? This is the first time hearing Psudo treated with Doxy. May I know what does of Levoquin (2) times a week. Seems this is working very well for you.

@sweethighland Yes, the doxy plus prednisone cleared it. Golly I was sooo sick. Initially, I was on 700mg of Levoquin daily for a good amount of time and then 500mg twice weekly which is my now dose. (Irene5)

@irene5 Thank you very much Irene. May I know the dose of Doxy and duration. I'm so happy the medication are working out for your symptoms. I now understand doctors in the UK gave Doxy to patients for flare ups.

I was prescribed Levaquin practically every few months and usually 2 weeks at a time for several years before the Bronchiestasis was diagnosed. I have Achilles tendonitis that is next to impossible to heal. I think it’s related because it is a known side effect. At the same time my sister has taken it as much as me and has no tendinitis issues.

This thread has been very helpful for I was just diagnosed with pseudomonas aeruginosa following a bronchoscopy. I was offered either the quinolone family (I commented on that a couple of days ago) or Tobramycin and am scheduled to start “Toby” tomorrow.
Background:
2004 severe pneumonia following a trip to NYC that took 2 rounds of the Z-pack to shake. Meanwhile my mother had been fighting MAC and BE for 3 decades and went on and off levaquin which resulted in severe peripheral neuropathy. I was her advocate/caretaker while she lived in assisted living. She died in 2009.
In 2012 I was diagnosed with MAC and immediately started and completed the 18 month Big Three. Yes, it was awful but I stuck with it and CT plus bronchoscopy showed no sign for years. In fact I hiked in the Alps Switzerland and Peru different years with no problem. Then along came COViD which I so far have had 3 times. And this past October figured out I. Eeded to have oxygen at night so my oxygen level wouod stay above 90.
But now the wrinkle that no one here has mentioned: in 2019 I fell backwards and landed on my wrist on a concrete patio. As the osteo surgeon said, I “rearranged all the bones of my wrist “and fractured the smaller of the two lower arm bones. Following surgery, I was referred to an endocrinologist. Up to that point I had maintained osteopenia because I was very active (hiking, biking) and upper body strength routine including bands. But my daughter was deathly ill and ultimately died in 2021 so rather than take the time to research Prolia, I went ahead and started at at my doctor’s strong recommendation. In retrospect, this was a huge mistake because it lowers one’s immune response for at least two weeks folllowing the every six months infusion. So……. Although MAC had started to make a reappearance, I had been doing well with occasional treatment with anox-clav. But at this point and with covid, I lost ground. Then I broke my foot and could not walk for several months. Terrible time of my life. Then my daughter died. I miss my adult daughter terribly.
Anyway, after another probable bout with covid last spring I then had surgery for a complete hysterectomy and began a long downhill slide with flares. Nothing seemed “right” and the 7% saline neb that had worked so very well just wasn’t cutting it in spite of participating in an excellent pulmonary rehab program the previous Fall.
So now here I am with MAC, BE and now pseudomonas. And I had to postpone my Prolia infusion which means my little osteoclasts are already busily munching away on my bones.
I hope to start “Toby” tomorrow and pray that it will zap the pseu aer so I can be cleared to take the Prolia although I would much prefer to take something else and am looking into alternatives.
BTW I did try Brinsupri last fall but developed hives on the third day so stopped.
And I am 81.
Any comments re any thing I have said here or other courses of possible action are welcomed. I am so sorry that we all need to be here. Sending love.