Jennifer1981
New member
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
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