When reading in this site I see that people with pseudomonas in the lungs use Tobi or whatever else for this. My daughter 2 has pseudomonas but not on anything for this. I was told that it is a very low when cultured for. My question is, if she does have a very small amount in the lungs should she be getting treatment for this or is usually when it starts to effect the lungs????? Has been on antibotics to help fight it. Is this a growth that comes and goes, can it be mild or sever, and can the antibotic help fight it enough to keep from getting worse?????Very confused on this one.
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Ok CONFUSED about this????
- Thread starter anonymous
- Start date
This is a question for your cf center. I too have cultured pseudamonas and was taking tobi but I hated it, It made me cough a lot more than I normally would. I was not able to exercise when I was on it because of the excess coughing. Although I have seen many people post on this site how tobi has worked for them.Dave 29 w/cf
NoDayButToday
New member
Just putting in my two cents-- I'm no doctor!Maybe because it was such a low level of pseudomonas that was cultured, the doctors thought it would be best to put your daughter on one round of antibiotics, and see how the next culture went, not wanting to use antibiotics too eagerly. I've had pseudomonas since I was four, and I think I've cultured it every single time since then- I think, basically once you have it, unless it is caught very early, you have it (also there was no Tobi when I first cultured pseudomonas). It can be mild and severe depending on how it affects lung function. Antibiotics do help fight it, and can very much slow the growth of it in the lungs.Also, like Dave, I am not the biggest fan of Tobi, since I've gotten ringing in the ears with it, I'm hesistant to use it often. Good luck with your girl!
Emily first cultured pseudomas when she was about 11. (I think). Once you get pseudomas, you have it. Every once in a while, it acts up and that's when it usually gets treated. She has been on inhaled TObi and HATES it! Right now she is on IV antibiotics which she takes to her summer job with her, but they seem to be working. Her IV drugs are Tobi and Zosyn and they are working pretty good!
<blockquote>Quote<br><hr><i>Once you get pseudomas, you have it. <hr></blockquote>One of the fairytales with CF. In those countries, where PA is treated agressively at first appearance, they have a high rate of success to eradicate the PA. I would classify non-treatment of PA as malpractice. At least would I ask for the docs reasons and the data the reasons are based upon. If they don't give it to you in written form, then you know what it's worth.
Mockingbird
New member
Hello, Anonymous. It all depends on how aggressive your doctors are. Some doctors have their patients take heavy antibiotics whether they have psudemonis or not. I know, because i used to go to one. =-) Other doctors only treat cf when it gets bad. While the aggressive aproach really does do wonders for the lungs, keep in mind the more medications there are in the body, the more chance there is for side effects to come out. I've had a lot of problems with side effects, so i know they can be even worse than the CF. A few of them even became permanent. I don't mean to scare you, the risk of having side effects normally are pretty small. I just wanted to say that the doctor is not completely wrong in what he is doing. =-) I hope everything works out for the best.Jarod22 with CF
I just have to say that we were told that pseudomas was a permanent resident once it moved in. Maybe that has changed over the recent years with newer treatments and antibiotics, but I haven't heard anything to contradict what we were told by our pulmonologists. It can become dormant for long periods of time.
When my daughter was first diagnosed with CF and pseudomonas almost 5 years ago we were told that once it is there, it doesn't leave. That said, she cultured it until her culture in october of this year and hasn't had it since. The new thinking seems to be that it CAN be eradicated through aggressive treatment. Rachel was on TOBI (everyother month) from the time she was about 16 months old and it finally kicked the pseudo out just before she turned 5. Some docs seem to believe the old thinking and others seem to think that staying on TOBI will keep the levels low enopugh that it won't be detected anymore and yet others seem to believe that the meds WILL get rid of it eventually. I believe that it depends on the person with CF too.Andrea
My understanding is that if the colony size of the pseud. culture is above a certain number and or the patient is symptomatic, then an antibiotic is indicated - oral, inhaled or iv depending on the severity. It is also possible to have it in your lungs with a bronchoscopy culture indicating such even when the sputum culture doesn't show anything. Sometimes it hangs out in the sinus' also. My son tested pos. for pseud. when he was diagnosed at 18mos. This was with a bronchoscopy. Since then he has only tested positive for it 2 times with sputum cultures. He is now 6. I hope some of this is helpful. Take Care. Jo Ann