Recently diagnosed +1 Pseudomonas Aeruginosa

@smc17 I also took a fluoroquinolone, Cipro, for colonized PA. (alongside tobramycin) My first treatment went really well. The following year I was prescribed Cipro again. After 5 days, my tendons in my arms and legs began hurting. I stopped treatment and have since found that fluoroquinolones can have tremendous negative side effects on the nervous, musculoskeletal and cardiovascular systems for some people. I will never take it again. It has been about 1 1/2 years since my tenon injury, and I still have not healed. I've just started Brinsupri this month. It seems to help with the coughing and fatigue.
Good luck to you and stay positive.

@smc17 , what can of side-effects do you get to your eyes? I don't do well with levaquin, I suspect cipro probably the same now.
Best wishes of great health to all of us!

Has anyone else been prescribed Cayston? I was unable to tolerate Tobramycin for the pseudomonas so my doctor prescribed Cayston ~ 28 day on/28days off. I just had my first 28 days finish and sputum test came back showing no pseudomonas! Unfortunately my white blood count was hi so she has me on 10 days of levaquin. I have been in the hospital three times this year as I also caught influenza A on top of everything else. Finally beginning to feel better but still dealing with the shortness of breath. Don’t mean to ramble but hadn’t seen Cayston mentioned and it seems to have done well for me so am curious if anyone else has had it.

@smc17 I understand what you’re saying !
It’s frustrating to know that you’re on antibiotics with the ID DRs for 14 days and 21 days which does take care of the infection but does not destroy the bacteria….leaving it to flare up again in an infection wherever it wants to …..last year I had UTI, Lung, Sinus (maxillary ) and eye infections . This year the sinus flared up again with infection PA…back on antibiotic IV… it’s now end of April and IV has been pulled , another culture taken that shows “no growth . However earlier this month I brought up a sputum from the lungs which got to the hospital lab right away and lo and behold it’s PA colonized… However no symptoms! So my cadre of Doctors are not treating me because there are no symptoms . My Pulmonologist has ordered a chest CT scan done to make sure there’s no infection in the lungs . He also had an arterial blood gas test done and overall he said that looked ok. Only a couple of line items slightly out of range !
I have been under a Rhumotologist care who did a large study to find out that I have high inflammatory markers in my lungs, my blood and my bones . He wants to treat me with Remicade infusions however he is extremely cautious not to do the infusions until all infection is clear which seems to be the point we’re at now . I did just receive a call and he is going back to the Drs to get a “go” signal So he can have a scheduler call me to start the infusions .
Onward and upward I hope.
All the best to you in your treatments ! Kay B.

@kaybast im praying for you. How did you know you had a sinus infection , UTI, eye infection due to PA, i was recently treated with cefioime for psuedonama aerigenosa over 2 weeks IV then a month later my sinuses seemed to be in pain . Then eye hermitage, nose bleeds. I used saline in sinuses . Prayed a lot after a month of that im feeling better again. Kept up all other airway clearance. My doctors give me no discussion or advise on anything . So im just on my own.

My doctor, a bronchiectasis and NTM expert in New York City, and I had discussed what our approach would be if I ever cultured pseudomonas. She said to start treatment immediately. There is a general consensus in the international bronchiectasis community to try to eradicate pseudomonas when it first appears because research suggests it can impact prognosis.

Warm regards,
Linda Esposito

@becleartoday
If you catch it early on you have a chance of clearing it with aggressive treatment. Once colonized you cannot get rid of it.

Doctors rarely warn their patients about
the tendon risks associated with Levaquin. And it is not just about pulling an Achilles tendon or engaging in strenuous exercise. I have a client who was simply stretching and ended up injuring her quad muscle, requiring physical therapy to return to normal.
That said, Levaquin is my rescue antibiotic and part of my travel kit. My doctor prescribed it because it targets pseudomonas, along with a wide range of respiratory bacteria. I have taken it several times over the past 10 years and have found it to be very effective, with no negative side effects for me personally.
Warm regards,
Linda Esposito

@smc17 thank you and lifting you up in prayer as well ! Prayer works !
Those four infections were all one after another last year. My ENT Dr took a culture and it came back as Psuedomonas . My white count was up and it was then that I was referred by my Pulmonologist, after he saw the culture report on “My Chart”, to Infectious disease Doctor who put me on IV antibiotic called Zosyn. After 14 days my white count came back to normal so the IV was pulled .
So this year in Feb I had routine check up with ENT Dr and he said it did not look good in my left maxillary so he took another culture and sure enough came back as Psuedomonas now colonized . So back on IV Zosyn for 21 days . The ENT Dr took another culture and it was no growth .
So probably last year the infections were treated however the bacteria was not eradicated . Recently I brought up a sputum and the lab report shows still the Psuedomonas however I have no symptoms , so no treatment .
I use Saline rinses as well and my ENT Dr says there is a rinse that has the antibiotics in it and next time with sinus infection he will put me on that . Maybe you could ask your Dr about that if you are prone to sinus infections as I am.
Take good care and don’t be afraid to reach out to your Doctor if you need help or to know something ! All the best , Kay B.

@becleartoday
Thanks for the good advice! Also if you have Ehlers Danos syndrome it can be extremely damaging to tendons etc.
Glad to hear that it works so well for you!