• Profile photo of gabby82802gabby82802
    Member
    #171204655381

    Hi again 19 year old with the Bactrim question,

    As far as Zithromax, I can’t offer you any other information because I never took it. However, it’s like I said that I won’t take it for long-term use.

    As far as the Prednisone, I have taken that before. What you have to be careful of with that is that it raises blood sugar levels. It usually is not recommended for people with CF that are diabetic or close to it. Once I became diabetic, my doctors discouraged it. I was only one it once and a while for flare ups. The other problem I had with it was that since it is a steriod; I had many yeast infections during the taking of it. That also holds true for me with Flovent and Advair. They also have steriodial agents. I had to discontinue them both for oral thrush. I hope this info helped.

    Jennifer 24 w/CF

    Profile photo of gabby82802gabby82802
    Member
    #171204664962

    Hi again 19 year old with the Bactrim question,

    As far as Zithromax, I can’t offer you any other information because I never took it. However, it’s like I said that I won’t take it for long-term use.

    As far as the Prednisone, I have taken that before. What you have to be careful of with that is that it raises blood sugar levels. It usually is not recommended for people with CF that are diabetic or close to it. Once I became diabetic, my doctors discouraged it. I was only one it once and a while for flare ups. The other problem I had with it was that since it is a steriod; I had many yeast infections during the taking of it. That also holds true for me with Flovent and Advair. They also have steriodial agents. I had to discontinue them both for oral thrush. I hope this info helped.

    Jennifer 24 w/CF

    Profile photo of WoobacatWoobacat
    Member
    #171204655365

    Quote


    Originally posted by: Vampy
    a clean out is when u go to the hospital like every year once a year and they put u in the hospital for two weeks and insert iv meds into ur system to make sure all bad virius’s or anything can go into ur system..

    I do know what a tune up involves, I just was not sure for the reason for them, as I have never had a “tune up”. I’ve only been on IV once and that was 10 years ago. I just wonder if sometimes doctors push this when its not necessarily needed. Obvisouly I’m fine without them, and I know a lot of people on here are fine too, but go in for them once and awhile.

    Profile photo of WoobacatWoobacat
    Member
    #171204664947

    Quote


    Originally posted by: Vampy
    a clean out is when u go to the hospital like every year once a year and they put u in the hospital for two weeks and insert iv meds into ur system to make sure all bad virius’s or anything can go into ur system..

    I do know what a tune up involves, I just was not sure for the reason for them, as I have never had a “tune up”. I’ve only been on IV once and that was 10 years ago. I just wonder if sometimes doctors push this when its not necessarily needed. Obvisouly I’m fine without them, and I know a lot of people on here are fine too, but go in for them once and awhile.

    Profile photo of DadofCFDadofCF
    Member
    #171204655359

    a clean out is when u go to the hospital like every year once a year and they put u in the hospital for two weeks and insert iv meds into ur system to make sure all bad virius’s or anything can go into ur system..

    Profile photo of DadofCFDadofCF
    Member
    #171204664941

    a clean out is when u go to the hospital like every year once a year and they put u in the hospital for two weeks and insert iv meds into ur system to make sure all bad virius’s or anything can go into ur system..

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204655312

    Jennifer, I really appreciate the info in your post. I am 19 and have been pretty healthy. I just want to be as knowledgable as I can so I can try to maintain my health. I am not totally against using inhaled antibiotics- I just want to be as conservative as possible with any medication because I fear becoming resistant. I liked your advice on alternating antibiotics! My doctor says that only inhaled Tobi and Colistin and oral Cipro and Levequin are suitable for fighting pseudomonas. I have done some research and also reading many posts on this site that there are other meds that can be used. Also my doctor has been persistant about me using alternate day prednisone for several years. I really dont feel comfortable with that because I have been taking it for so long. So I am also trying to learn more about antiinflammatories such as zithromax (three times a week) and inhaled steriods so any infor you can share with me would be great.

    Profile photo of CFMemberChrisBaldwin
    Moderator
    #171204664897

    Jennifer, I really appreciate the info in your post. I am 19 and have been pretty healthy. I just want to be as knowledgable as I can so I can try to maintain my health. I am not totally against using inhaled antibiotics- I just want to be as conservative as possible with any medication because I fear becoming resistant. I liked your advice on alternating antibiotics! My doctor says that only inhaled Tobi and Colistin and oral Cipro and Levequin are suitable for fighting pseudomonas. I have done some research and also reading many posts on this site that there are other meds that can be used. Also my doctor has been persistant about me using alternate day prednisone for several years. I really dont feel comfortable with that because I have been taking it for so long. So I am also trying to learn more about antiinflammatories such as zithromax (three times a week) and inhaled steriods so any infor you can share with me would be great.

    Profile photo of WoobacatWoobacat
    Member
    #171204655202

    Hmm – thanks for the explanation Jenn. I wonder though – why is it that your doc is against you trying just because you might get gestational diabetes? Plenty of women that are diabetic do have healthy pregnancies. I’m of the mind set that if you go in being healthy, you’ll follow through being healthy. I know that CF as well as Diabetes is two strikes, but that just means taking extra care of yourself. I guess I’m just of the mind set that I’m not willing to give up the dream of having children naturally. I’m healthy for a CFer and Diabetic. My docs are completly fine with that fact that my boyfriend and I are going to start trying summer/fall, so long as I’m where I need to be health wise to have a healthy baby. I can understand this as a personal choice for you, but I just wonder at your docs comment is all.

    Profile photo of WoobacatWoobacat
    Member
    #171204664791

    Hmm – thanks for the explanation Jenn. I wonder though – why is it that your doc is against you trying just because you might get gestational diabetes? Plenty of women that are diabetic do have healthy pregnancies. I’m of the mind set that if you go in being healthy, you’ll follow through being healthy. I know that CF as well as Diabetes is two strikes, but that just means taking extra care of yourself. I guess I’m just of the mind set that I’m not willing to give up the dream of having children naturally. I’m healthy for a CFer and Diabetic. My docs are completly fine with that fact that my boyfriend and I are going to start trying summer/fall, so long as I’m where I need to be health wise to have a healthy baby. I can understand this as a personal choice for you, but I just wonder at your docs comment is all.

    Profile photo of gabby82802gabby82802
    Member
    #171204655198

    To the person that posted about Bactrim,

    I never really took Bactrim because I’m VERY allergic to it. With my pseudo, the only thing I could take was Cipro, Levaquin, and Doxy. Bactrim was prescribed to me, but within 3 days I was covered from head to toe with hives. One more drug that I can’t take. However, since it is recommended for pseudo this is what I would advise. Most medications I hate; however, there comes times when they are needed.

    I read that you question inhaled meds more than oral or IV meds. Why??? I think that inhaled meds are the safest and here is why. When you take Pulmozyme or Tobi that medicine is localized to your lungs. Well, mostly anyway. It doesn’t really get in your bloodstream much at all. I’m going to pull my trying to conceive into this. Pulmozyme is safe to take during pregnancy. You can find that on the internet with the FDA. Also, my doctors have instructed me this. I’m not as sure though about the TOBI since I don’t take that anymore. I stopped two years ago due to resistance and too much oral thrush. I was on it for 8 years. For me, Tobi stopped working (also reflected in my PFT’s and symptoms) and the side effects were too great. When taking an inhaled med, you build a resistance much slower. It doesn’t really effect your bloodstream. You may culture yeast in your lungs though later down the line. Nothing can really be done for that. Although I didn’t think I started to culture that until I was put on TOBI for a couple of years. I’m not sure. Back then I also got many stupid “tune-ups”.

    Anyway, I recommend whole-hearted Pulmozyme. I have been taking it 1-2x daily for 10 years. I don’t have a resistance to it, and I feel so much better after just breathing it in. If your not on it, try it. It won’t hurt. If you decide it’s not for you, stop it. I don’t have any side effects. I like it. Which for me is hard to come by.

    As far as oral meds go (i.e. Bactrim), I agree that there comes times when you do need oral meds to treat a lung infection or whatever. Short term use maybe twice a year at most should be alright. However, I suggest you should ask your doctor about alternating the med each time you need one. One time use Cipro. The next time use Bactrim. This way your body can’t get resistant as quickly. Also, never stop your med early. This increases resistance chances. You may feel better, but if you stop, you will help build resistance more quickly. With the use of oral meds, it gets in your bloodstream and most are not safe during pregnancy. This is one tool is use to determine the strength or should I say damage of a med. Also, oral meds start to create yeast throughout your body. That is why you should always take them with a lot of water. Once levels are too high, if you are a woman, you can get a yeast infection down below. That is not the only reason that you get them, but it’s the most common. Also, women in general need to be more careful with the usage of meds. Constant infections can effect fertility.

    Long-term oral meds I fully discourage. And actually back to Liz’s initial topic this is the ONLY time I think IV antibiotics are better. Even though IV meds are stronger, your body has a chance to regroup back to natural. And you may only do IV’s once or twice a year. Yes, you still have a chance of building up resistance like me, but taking an oral med only allows your body to completely “forget” how to act as close to normal as possible. Also, you become dependent and will probably start to get yeast infections down below and in your mouth. They won’t really go away. You’ll just treat them, and they will continue to come back. Long-term oral meds blood levels won’t come down unless you stop the med. Also, you will get resistant probably within a year or two. AND I’M NOT MAKING THAT UP. My ex-doctor built up Zithromax like it was ” so wonderful”. When he was finally done pushing me I asked him, ” And with the studies done, how long did it take to get resistent to it”. That was the answer I got. Then what. One more med you don’t have when you really need it. Besides who really wants to take a med every day for the next two years if you don’t really need it???

    Anyway, I suggest looking into inhaled meds. If you should need short-term oral meds, alternate. Use IV’s only when absolutely needed. NEVER use long-term anything when it comes to oral or IV’s. I hope this helped. If you need to ask anything else, feel free. Nothing is really that personal to me when it comes to the treatment of my CF. I’ll be back tomorrow. I have to do some cleaning.

    Jennifer 24 W/CF

    Profile photo of gabby82802gabby82802
    Member
    #171204664788

    To the person that posted about Bactrim,

    I never really took Bactrim because I’m VERY allergic to it. With my pseudo, the only thing I could take was Cipro, Levaquin, and Doxy. Bactrim was prescribed to me, but within 3 days I was covered from head to toe with hives. One more drug that I can’t take. However, since it is recommended for pseudo this is what I would advise. Most medications I hate; however, there comes times when they are needed.

    I read that you question inhaled meds more than oral or IV meds. Why??? I think that inhaled meds are the safest and here is why. When you take Pulmozyme or Tobi that medicine is localized to your lungs. Well, mostly anyway. It doesn’t really get in your bloodstream much at all. I’m going to pull my trying to conceive into this. Pulmozyme is safe to take during pregnancy. You can find that on the internet with the FDA. Also, my doctors have instructed me this. I’m not as sure though about the TOBI since I don’t take that anymore. I stopped two years ago due to resistance and too much oral thrush. I was on it for 8 years. For me, Tobi stopped working (also reflected in my PFT’s and symptoms) and the side effects were too great. When taking an inhaled med, you build a resistance much slower. It doesn’t really effect your bloodstream. You may culture yeast in your lungs though later down the line. Nothing can really be done for that. Although I didn’t think I started to culture that until I was put on TOBI for a couple of years. I’m not sure. Back then I also got many stupid “tune-ups”.

    Anyway, I recommend whole-hearted Pulmozyme. I have been taking it 1-2x daily for 10 years. I don’t have a resistance to it, and I feel so much better after just breathing it in. If your not on it, try it. It won’t hurt. If you decide it’s not for you, stop it. I don’t have any side effects. I like it. Which for me is hard to come by.

    As far as oral meds go (i.e. Bactrim), I agree that there comes times when you do need oral meds to treat a lung infection or whatever. Short term use maybe twice a year at most should be alright. However, I suggest you should ask your doctor about alternating the med each time you need one. One time use Cipro. The next time use Bactrim. This way your body can’t get resistant as quickly. Also, never stop your med early. This increases resistance chances. You may feel better, but if you stop, you will help build resistance more quickly. With the use of oral meds, it gets in your bloodstream and most are not safe during pregnancy. This is one tool is use to determine the strength or should I say damage of a med. Also, oral meds start to create yeast throughout your body. That is why you should always take them with a lot of water. Once levels are too high, if you are a woman, you can get a yeast infection down below. That is not the only reason that you get them, but it’s the most common. Also, women in general need to be more careful with the usage of meds. Constant infections can effect fertility.

    Long-term oral meds I fully discourage. And actually back to Liz’s initial topic this is the ONLY time I think IV antibiotics are better. Even though IV meds are stronger, your body has a chance to regroup back to natural. And you may only do IV’s once or twice a year. Yes, you still have a chance of building up resistance like me, but taking an oral med only allows your body to completely “forget” how to act as close to normal as possible. Also, you become dependent and will probably start to get yeast infections down below and in your mouth. They won’t really go away. You’ll just treat them, and they will continue to come back. Long-term oral meds blood levels won’t come down unless you stop the med. Also, you will get resistant probably within a year or two. AND I’M NOT MAKING THAT UP. My ex-doctor built up Zithromax like it was ” so wonderful”. When he was finally done pushing me I asked him, ” And with the studies done, how long did it take to get resistent to it”. That was the answer I got. Then what. One more med you don’t have when you really need it. Besides who really wants to take a med every day for the next two years if you don’t really need it???

    Anyway, I suggest looking into inhaled meds. If you should need short-term oral meds, alternate. Use IV’s only when absolutely needed. NEVER use long-term anything when it comes to oral or IV’s. I hope this helped. If you need to ask anything else, feel free. Nothing is really that personal to me when it comes to the treatment of my CF. I’ll be back tomorrow. I have to do some cleaning.

    Jennifer 24 W/CF

    Profile photo of gptngptn
    Member
    #171204655196

    Glad you have a username now Jennifer. I still dont understand your diabetes doctor way of thinking about conceiving. Many, many people (CFers & non CFers) develop gestational diabetes during pregnancy & their sugars return to normal after delivery. I am one of them & I am more prone to diabetes from the CF & family history. I used insulin to control my sugars during my pregnancy. With diabetes being so prominant in American nowadays, if everyone that MIGHT get it didnt have kids, the population would reduce drastically! I am sorry, but I think that doctor is wrong, wrong, wrong!

    Profile photo of gptngptn
    Member
    #171204664786

    Glad you have a username now Jennifer. I still dont understand your diabetes doctor way of thinking about conceiving. Many, many people (CFers & non CFers) develop gestational diabetes during pregnancy & their sugars return to normal after delivery. I am one of them & I am more prone to diabetes from the CF & family history. I used insulin to control my sugars during my pregnancy. With diabetes being so prominant in American nowadays, if everyone that MIGHT get it didnt have kids, the population would reduce drastically! I am sorry, but I think that doctor is wrong, wrong, wrong!

    Profile photo of gabby82802gabby82802
    Member
    #171204655189

    Hi Liz,

    I finally opened up a profile. You can always ask me anything. There really aren’t too many things that I consider personal. I do see a diabetes doctor since I am borderline. I became borderline when I was 21. Before I started exercising my A1C at highest was 6.5. Once I started exericisng, it dropped to 5.1. Now it is 5.7. The only treatment I had to do when I was at 6.5 was take 1 mg of Amaryl and do 4 bloodsugars a day. With my A1C now at 5.7, I don’t need to take an insulin pill and only need to do bloodsugars when sick or before an office visit. I get my A1C repeated every 6 months. I never was on shots or anything like that. The pill I was on was like air. My highest bloodsugar was around 170 two hours after eating a large meal. Unless it was pasta or pizza. Then it was around 200.

    Like I said before, my CF doctors are fine with the idea of me conceiving. However, my diabetes doctor opposes it. Mostly because of the likely chance of gestational diabetes. And I am almost positive that she is right. I won’t be able to run 2 miles while pregnant. I can walk, but my sugars will be higher. High enough that I will be gestational.

    When I was in my teens, I always wanted the perfect husband, the perfect house, the perfect family with children like many desire. But then, all I ever heard from my GYN and CF doctor were to ” tie my tubes”. ” Insurance will pay for it since it’s considered medically necessary”. ” You’ll never live long enough to have a child”. Today, I am healthier than ever. My personal viewpoint on conceiving is like this. First, I wanted to have my husband tested. If he came up a carrier, I wasn’t going to try. I couldn’t bear the thought of possibly having a child with CF and watch them go through what I go through. Also if they asked me, ” How could have you been so stupid to have me knowing you were taking chances”. How would I answer that??? My sister to give an example was born after me and has CF. She did that to my mother and father. As a result, she has hard feelings towards them and doesn’t really take care of herself. I WOULD NOT HAVE GIVEN THAT EXAMPLE IF IT HAD NOT HAPPENED IN MY FAMILY. I WOULD NOT WANT TO OFFEND ANYONE.

    Also before conceiving, I wanted to have my PFT’s at best where they are now, weigh 108 pounds (which is recommended for my height before conception), and not be diabetic. With the few medications that I am on, there were no meds that would have been an issue during pregnancy. My PFT’s were great. The weight I wasn’t too concerned with since it has never been an issue for me. But the diabetes concerned me. And really–it is the only medical thing that concerns me right now. I’m not saying that something won’t come up, but for now it just bothers me. I feel like I have CF. And even though it is controlled, that’s ” 1 strike”. However, going in diabetic is “2 strikes” and it bothers me. I feel that there are women that get gestational diabetes without CF. So if I get gestational diabetes, I’m not overly concerned. But to go in diabetic and controlled (of course), it just bothers me. This same view bothers my husband. I don’t know what it is, but I just don’t like the idea. I want our baby to be as healthy as possible. I want it to have the best chance for the future. To have a mommy and daddy around for as long as possible. The idea of having to give myself shots throughout an entire pregnancy scares me. You know from previous posts that I not a med fan. I think I’m also scared because insulin shots would be new to me. Well, I going to respond to the other person about Bactrim. See ya.

    Jennifer 24w/CF

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