Hi, I am soon to be 19 and I have always had a mild case of cf and never cultured pseudomonas until about one and a half years ago. I have been on alternate day prednisone as an anti-inflammatory for several years. After the postive culture came back with pseudomonas my doctor prescriped inhaled Tobi and Cipro. Well my body didnt tolerate either of those meds well. All the side effects that I had came on gradually but ended up that I had to discontinue the Cipro after 2 weeks and I stuck with the Tobi for a month but it caused me to lose my voice and also made me very short of breath!!!! Anyway after a month the culture came back again showing pseudomonas and so again my doctor had me take Tobi and the side effects were worse but I stuck with it for 6 weeks. Then after another culture still showed no change my doctor presribed inhaled Colistin and oral Levequin-hey no side effects! However, after three months of that treatment my culture still had pseudomonas. Then it was recommended that I go to the hospital for 2 weeks of IV Tobi and Mereopeum and also a Broncscopy(no pseudomonas cultured from that only mold). So anyway for six months my cultures were negative. Now I am culturing pseudomonas again and am waiting to hear what my doctor wants me to do. Does anyone have any advice?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
treatment advice
- Thread starter anonymous
- Start date
Hi, I am soon to be 19 and I have always had a mild case of cf and never cultured pseudomonas until about one and a half years ago. I have been on alternate day prednisone as an anti-inflammatory for several years. After the postive culture came back with pseudomonas my doctor prescriped inhaled Tobi and Cipro. Well my body didnt tolerate either of those meds well. All the side effects that I had came on gradually but ended up that I had to discontinue the Cipro after 2 weeks and I stuck with the Tobi for a month but it caused me to lose my voice and also made me very short of breath!!!! Anyway after a month the culture came back again showing pseudomonas and so again my doctor had me take Tobi and the side effects were worse but I stuck with it for 6 weeks. Then after another culture still showed no change my doctor presribed inhaled Colistin and oral Levequin-hey no side effects! However, after three months of that treatment my culture still had pseudomonas. Then it was recommended that I go to the hospital for 2 weeks of IV Tobi and Mereopeum and also a Broncscopy(no pseudomonas cultured from that only mold). So anyway for six months my cultures were negative. Now I am culturing pseudomonas again and am waiting to hear what my doctor wants me to do. Does anyone have any advice?
I don't mean to be a downer here, but I've cultured at least one strain of pseudomonas since I was 7 years old. It's pretty much a given that a huge percentage of CF's will culture it at some point. Pseudomonas is everyplace.
I know these days they say the earlier and more aggressively you treat it the better off you'll be but that wasn't how it was handled for me when I was younger (at least not that I can remember). At this point, I just accept having it as a part of life.
I'm glad that you were able to get rid of it for months. I wonder if you've picked it up again someplace or if the same pseudomonas you had has resurfaced?
Sorry I couldn't give better advice. Hopefully someone else will.
I know these days they say the earlier and more aggressively you treat it the better off you'll be but that wasn't how it was handled for me when I was younger (at least not that I can remember). At this point, I just accept having it as a part of life.
I'm glad that you were able to get rid of it for months. I wonder if you've picked it up again someplace or if the same pseudomonas you had has resurfaced?
Sorry I couldn't give better advice. Hopefully someone else will.
I don't mean to be a downer here, but I've cultured at least one strain of pseudomonas since I was 7 years old. It's pretty much a given that a huge percentage of CF's will culture it at some point. Pseudomonas is everyplace.
I know these days they say the earlier and more aggressively you treat it the better off you'll be but that wasn't how it was handled for me when I was younger (at least not that I can remember). At this point, I just accept having it as a part of life.
I'm glad that you were able to get rid of it for months. I wonder if you've picked it up again someplace or if the same pseudomonas you had has resurfaced?
Sorry I couldn't give better advice. Hopefully someone else will.
I know these days they say the earlier and more aggressively you treat it the better off you'll be but that wasn't how it was handled for me when I was younger (at least not that I can remember). At this point, I just accept having it as a part of life.
I'm glad that you were able to get rid of it for months. I wonder if you've picked it up again someplace or if the same pseudomonas you had has resurfaced?
Sorry I couldn't give better advice. Hopefully someone else will.
CFers are "prone" to pseudomonas. If it colonizes its nearly impossible to erradicate. Since it took so long for U to culture it & it was treated immediately, it sounds like U are not colonized yet which is good news. My understand to put it in simple terms is that pseudomonas is like a cold.....even with precautions U are bound to catch it again. Whether it turns into pneumonia (colonizes in the pseudomonas instance) depends on when its caught & how aggresive its handled!
CFers are "prone" to pseudomonas. If it colonizes its nearly impossible to erradicate. Since it took so long for U to culture it & it was treated immediately, it sounds like U are not colonized yet which is good news. My understand to put it in simple terms is that pseudomonas is like a cold.....even with precautions U are bound to catch it again. Whether it turns into pneumonia (colonizes in the pseudomonas instance) depends on when its caught & how aggresive its handled!
I would engage in any type of airway clearance such as CPT , VEST and especially exercise. Psuedo does not like oxygen so keep on taking deep breaths when you can and exercise to your hearts content. If you keep your lungs clean you will be most likely to culture negative or not get any other bugs. Keeping your CF in tip top shape. Always look forward what you can do on your good days so your bad days will never come to visit. That was my motto. I always did extra therapies on my good days and this added good quality years to my lungs.
Risa
Risa
I would engage in any type of airway clearance such as CPT , VEST and especially exercise. Psuedo does not like oxygen so keep on taking deep breaths when you can and exercise to your hearts content. If you keep your lungs clean you will be most likely to culture negative or not get any other bugs. Keeping your CF in tip top shape. Always look forward what you can do on your good days so your bad days will never come to visit. That was my motto. I always did extra therapies on my good days and this added good quality years to my lungs.
Risa
Risa
thelizardqueen
New member
I cultured pseudomonas when I was 6 years old. I was lucky that it was cuaght in time and did go away for about 3 years. Then I caught it again, and ever since I've cultured it. The strength of the pseudomonas will vary - anywhere from 1 to +4, but it will never go away. Its enivitable that you will culture this eventually, its only a matter of time. Majority of CFer's culture it, and it never goes away, but simply lies dormate sometimes. Just be aggresive with your treatment. Whenever I culture pseudo - I'm on two weeks of Cipro, 1 month on, one month off of TOBI, and the occasional prescription for oral levequin. Pseudo to me, is everyday life.
thelizardqueen
New member
I cultured pseudomonas when I was 6 years old. I was lucky that it was cuaght in time and did go away for about 3 years. Then I caught it again, and ever since I've cultured it. The strength of the pseudomonas will vary - anywhere from 1 to +4, but it will never go away. Its enivitable that you will culture this eventually, its only a matter of time. Majority of CFer's culture it, and it never goes away, but simply lies dormate sometimes. Just be aggresive with your treatment. Whenever I culture pseudo - I'm on two weeks of Cipro, 1 month on, one month off of TOBI, and the occasional prescription for oral levequin. Pseudo to me, is everyday life.
I'm sure some of the usual suspects might groan with me replying the same old response, but you might benefit from oregano oil (to the poster of this thread). A few CF's have reported showing no signs of PA after using the oil in an inhaled method. I also used tobi and still am on collistin now, and I developed a resistance to tobramycin, and collistin was about effective as inhaling water after just a month or two. If you are interested (not sure if you are new or not, but just figured i'd throw the info out there if you are interested), just search this site for oregano oil, essential oil, and/or my name for more information.
I'm sure some of the usual suspects might groan with me replying the same old response, but you might benefit from oregano oil (to the poster of this thread). A few CF's have reported showing no signs of PA after using the oil in an inhaled method. I also used tobi and still am on collistin now, and I developed a resistance to tobramycin, and collistin was about effective as inhaling water after just a month or two. If you are interested (not sure if you are new or not, but just figured i'd throw the info out there if you are interested), just search this site for oregano oil, essential oil, and/or my name for more information.
Basically once you have psuedo you cant get rid of it you can only tame it! Usually when you have a flare up with it it can cause pneumonia or thats when i kknow i need IV's but otherwise its still in my body just not as aggressive. I have 2 strains of psuedo now and I cant get rid of either. I have to go on IV's every few months to keep it under control. I am also listed for transplant.
If you can keep the activity of the psuedo down than you will be fine. you can have it for years without having a major problem but it is harder to treat than other infections and so you have to stay on top of it which is why most docs prescribe tobi and/or colistin inhaled to be alternated so that the psuedo doesnt become resistant as quick but so you can also keep the flare ups down.
Kristy
23/listed for lungs and liver/CFRD
If you can keep the activity of the psuedo down than you will be fine. you can have it for years without having a major problem but it is harder to treat than other infections and so you have to stay on top of it which is why most docs prescribe tobi and/or colistin inhaled to be alternated so that the psuedo doesnt become resistant as quick but so you can also keep the flare ups down.
Kristy
23/listed for lungs and liver/CFRD
Basically once you have psuedo you cant get rid of it you can only tame it! Usually when you have a flare up with it it can cause pneumonia or thats when i kknow i need IV's but otherwise its still in my body just not as aggressive. I have 2 strains of psuedo now and I cant get rid of either. I have to go on IV's every few months to keep it under control. I am also listed for transplant.
If you can keep the activity of the psuedo down than you will be fine. you can have it for years without having a major problem but it is harder to treat than other infections and so you have to stay on top of it which is why most docs prescribe tobi and/or colistin inhaled to be alternated so that the psuedo doesnt become resistant as quick but so you can also keep the flare ups down.
Kristy
23/listed for lungs and liver/CFRD
If you can keep the activity of the psuedo down than you will be fine. you can have it for years without having a major problem but it is harder to treat than other infections and so you have to stay on top of it which is why most docs prescribe tobi and/or colistin inhaled to be alternated so that the psuedo doesnt become resistant as quick but so you can also keep the flare ups down.
Kristy
23/listed for lungs and liver/CFRD
This time tell your doctor that ur medication isn't working. They stick me on cipro and i get so angry because cipro doesn't work for me and never has but thought they continue to put me on it. I hate it when they do that. Tell them that it doesnt work or something. Evidently since they have tried it for months and kept doing tests and it came back negative its not doing its job and they should have put you on something sooner.
This time tell your doctor that ur medication isn't working. They stick me on cipro and i get so angry because cipro doesn't work for me and never has but thought they continue to put me on it. I hate it when they do that. Tell them that it doesnt work or something. Evidently since they have tried it for months and kept doing tests and it came back negative its not doing its job and they should have put you on something sooner.