Have Bronchiectasis, recently diagnosed with pseudomonas

Faye, Did you take 500 mg twice a day or three times? Also do you have any kidney issues at all? After the initial reaction to the Cipro did you have any side effects? I really need to knock back my Pseudo but due to my other serious co morbidities I am afraid to try it.

An aside: I have kidney issues and pseudomonas and after a lot of consulting I was put on Merem IV for 2 weeks and it had no effect on my kidneys - numbers stayed the same throughout and after the treatment. Afterwards I was put on a controversial treatment of Azithromycin 3 times a week 250 mg. plus 3% sodium chloride. No further exacerbation in the last 9 months knock on wood! (my sputum was not clear after the Merem though..it might take a while I don't know about that as I haven't had the need for more samples yet)

Thanks Liz for chiming in. Meropenem IV for 2 weeks? Is that what you are referring to. Out of all the IV options for Pseudomonas did they conclude it would be the safest for your kidneys? Did you have to start it in the hospital and if so how many days were you there? Did you finish at home getting kidney function tested periodically? My issue is that I get reduced urine output VERY easily from many remedies or antibiotics etc. and I have an odd issue of never peeing during the daytime. I am afraid of harming my kidneys due to all that but thus far my tests are ok. I imagine Cipro was not even an option for you? Did you feel significantly better after the Meropenem even though it did not clear it? Sorry for so many questions! Would really help to know.

Yes Meropenen IV 2 weeks. I was in the hosp the whole time because I had double pneumonia and heart failure (Myocarditis caused heart failure - got better and returned to normal ejection fraction for left ventricle in about 4-6 months). Yes they decided the Merem (short for Meropenen sp?) was the safest. No Tobi inhalation either they said. My kidney function was checked daily for 2 weeks in hospital then after the end of the treatment 2 weeks later and then a month later and all kidney function numbers stayed around the same with minor usual fluctuations. Cipro was not an option because in the past I had tendon inflammation in my wrist (couldn't use laptop touch pad with right hand) and achilles tendon while on a 10 day course of Cipro (also I am on prednisone low dose for autoimmune issues and that makes Cipro more dangerous re Achilles tendon). I think the urine issue has to do with blood flow and my doctor said it's not unusual to go more at night when you are in the prone position for what that is worth. Yes I have felt much better after the treatment but it took a while due to the pneumonia and heart failure. Now (9-10 months later) I am almost back to normal feeling (still no muscles because exercise had to be put off due to heart failure issue) and have more energy despite the pseudomonas being colonized. I don't know what part the azithromycin is playing in all this but for sure the sodium chloride helped a lot also with my sinuses. Have not had one sinus headache since I started (knock on wood!) It's very hot here so I haven't tried walking outside much but in the house I can do a very fast six minute walk test which I do daily or almost daily to check on myself. (100 steps a minute). It was all quite scary. The cardiologist wanted to implant a defibrillator but luckily my echo cardiogram showed my heart was back to normal. No idea what caused the myocarditis - pneumonia infection, an autoimmune disease I have (GPA) or the vaccine per the cardiologist...a "mystery".

Hi irenea8. I was taking Cipro 500 mg twice a day. I do not have any kidney issues that I'm aware of. There were a few small red itchy places during the two weeks of taking Cipro. Based on my experience, I would take Cipro 500 mg again. I pray you are able to find something that works for you. Faye

Thank you Liz. Bare with me a few more questions. I wonder how you could have taken the Cipro if you have kidney issues? I know about the serious tendon issue but thought it was especially risky for kidneys. Did you have kidney issues when they prescribed it? Did you last the 10 days? Did it work for the Pseudo? Hearing that a Dr told you the urine issue at night has to do with blood flow is helpful. Was that the Cardiologist? A urologist, endocrinologist, GP, pulmonologist could not give me an answer on why. I never go during the day at all until around 6 pm but additionally I get the reduced urine output when I take many things such as remedies or supplements. The azithro is probably keeping things at bay for you along with saline. I am surprised you can take the azithro. I took only 1 and had some scary heart rhythm reactions so i never took another. What is GPN? What vaccine are you referring to? most likely it was the pneumonia that caused it and why it resolved. Thanks for your patience.

As I remember it, they reduced the Cipro dose by 1/2 so it wouldn't build up too much..and hurt kidneys. It had no effect on my kidney numbers but this was in 2015 or so. I only had light pseudomonas at that time following a bronchoscopy. I lasted the 10 days but somehow the pseduomonas got worse and colonized over time (don't know how long though). It was the kidney dr. (nephrologist) who told me about the blood flow and night time urine. Did you have prolonged Q T time with the Azithro? That's the reaction I've heard about but my cardiologist said it wouldn't be a problem in my situation he didn't think. Also I am on a 1/2 dose - 250 mg. and only 3 days a week. So far EKG is fine. GPA is called also Wegeners...it is what did in my kidneys - my body attacked them. It is a kind of vasculitis. The vaccine was the Covid vax he meant (I had like 4-5 doses), Myocarditis can be caused by the covid vax or covid or other things so not clear to anyone at this point. I am being checked again in a few months. Ask all you want! I don't mind. The whole subject is interesting.

@fdixon63 Hello, Were you given a reason for no vest usage while taking Tobi?
Thanks for any input on this.
Kate

Hi Kate. I had a couple of episodes of bronchospasm that he attributed to using the vest while inhaling the Toby. I was really having a tough time with coughing and it just was too much for me to manage both together. Hope this is helpful.
Faye

Hello, I'm new on the forum but already learned so much from everyone. Thank you so much.
I was diagnosed with Pseudomonas a. Sept. 21, 2023 along with Aspergillus fungal infection. I've been on IV antibiotics for almost 2 weeks now and starting to feel somewhat normal again. I start inhaled Tobramycin this week, (1 week on, 3 weeks off). Hoping it will help as well. I had MAC and Nocardia infections 9 years ago successfully treated over 18 months with Ethambutol and Rifampin plus IV infusions for 4 months. I feel so grateful to be here today at 80 years old and was pretty good shape until June this year when the pseudomonas hit me big time. (took forever to get diagnosed it seemed). After reading all the good info here, I also asked my doctor about 7% saline which I am doing daily now and it really helped to bring up lots of sputum that I normally cannot cough up. Since I've been on the IV I don't seem to bring up much sputum now, and wondering if that is a good sign or what? Also the saline chokes me so bad I'm wondering if it is too strong and 3% would be better? Any comments would be appreciated.