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Should 4+ Pseudomonas be treated?
Good morning to all. I'm wondering what experiences you've had regarding treatment on recurring Pseudomonas. I had just finished treatment for 3+ Stenotrophomonas Maltophilia and wanted to know if the treatment had gotten rid of it. I did not hear from my pulmonary doc about results of my last sputum--testing had begun on June 19th. Last Friday I went on the portal and this is what I found. FINAL REPORT: 4+ Pseudomonas aeruginosa. This is the 5th Pseudomonas since March 2019. I had a result of
3+ Pseudomonas Aeruginosa in March this year and I was put on Tobramycin for
28 days. Now I show 4+ and have not heard from anyone from the doctor's office. I contacted the doctor by portal to question if treatment was indicated.
I feel OK, no noticeable shortness of breath, am nebulizing 7% Sod. Chl. once a day, appetite not great but OK (basically normal for me). I rarely cough up anything of color after nebing--maybe pale yellow, if at all. Over the last week or so (a few times a day) I have just a very slight dry cough. Otherwise am asymptomatic. The doctor responded "I would say at this point that we should not treat unless something changes clinically. We can discuss more at your next appointment but please let me know if your symptoms change.” Any experiences out there to share?
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Hi there. I was treated for pseudomonas in 2016 with 28 day tobramycin. My coughing ceased after it was done and I tested negative. I was still on my preventative antibiotic regimen of then doing bi-monthly ciprofloxacin and toby every other month. That kept the pseudo away. There has been success in combining the toby treatment with a med called 'Glatiramer Acetate' and is marketed as 'Copaxone'. It showed a 71% efficacy when combined with tobramycin. This med seems to boost the effectiveness. (@auntnanny) Most doctors want patients that nebulize saline to do it twice a day; once in the morning and once in the evening. Is there a particular reason that you are doing it only once a day?
Hello Jan! Have you asked your dr about adding 'Copaxone' to your toby regimen? That med supposedly boosts the effecacy 71%. It could be worth a try.
windwalker No, I've not heard of it nor has it been mentioned but I was just reading your first post and "saved" it because I plan to ask Mayos in Rochester about it. Thanks so much for sharing that bit. You are still alternating toby and the antibiotic, right? I have difficulty breathing after a few days of toby. So now, I've been given two more meds to nebulize for that problem. Yupelri and Perforomist . Have started those and have broken out with a rash -- so have now stopped them. Will try again after rash is totally gone -- just to see if that is indeed the problem. Goodness..... it is always something.
I am so sorry you continue to have such difficulties with treating that darn pseudo. Had you been using albuterol to open your airways prior to doing the toby?
You know, I began to have trouble on the toby too. It would get kinda bad after two weeks on it, then I would press on and be so much better after the 28 days. I would always say to myself, it's going to get bad before it gets better. It would depend on how severe your symptoms are on whether I recommend staying on it. My symptoms were mainly uncomfortable, like lungs feeling very wet and congested.
I had read about the glatiramer acetate (copaxone) on a Cystic Fibrosis site. It may only work on genetic CF patients. I know I have posted the article in the past. Will try to find it again for you.
@poodeldoc Thanks - that was a heavy read with my morning coffee! I have bookmarked it to share when this question arises in future. I notice that they have failed to address continuation of the med regimen with MAC when conversion to negative cultures fails to occur at all - even after 18 months of therapy. Sometimes, even though MAC has been around for a long time, I feel like so much is still not known about it.
I thought it was interesting that pseudomonas is susceptible to the same meds as MAC - perhaps that is why mine never came back.
Sue
I have posted this link for you and @auntnanny to print out and maybe discuss with your doctors. I hope this helps. https://cysticfibrosisnewstoday.com/2018/06/13/ecfs2018-multiple-sclerosis-treatment-glatiramer-acetate-aids-antibiotic-in-killing-pseudomonas-aeruginosa-strains/#:~:text=Combining%20glatiramer%20acetate%2C%20an%20approved%20MS%20treatment%2C%20with,patients%2C%20a%20study%20presented%20at%20ECFS%202018%20shows.
Are you working in your yard or garden much? I was wondering how/where you keep picking up the pseudo. I know it is invasive in the environment, but, you may be exposing yourself even more to it than necessary. When I looked up this organism, I had read that it is mostly found on leaves of various plants. As an extra precaution, if you do yardwork or love to garden, it would be helpful to wear an N95 mask & gloves, and be sure to wash your hands up to your elbows.
windwalker…… I feel like I can only get about 20% of air when I breathe. I took oxygen level with the clip on finger type tester and it was 85%. Can't do too much at that time. It rather scares me to go on with it. So, now they have me on 2 weeks on -- 2 weeks off. I'm on again right now. I've never had any coughing relief but have been unable to do the 28 day program. I've done it on a lesser scale for over a year now. I'm going to inquire about adding the second product to it. Thank you