L
lifeisgood729
Guest
I did this study last spring. That was the worst tasting stuff I have ever had to nebulize. I still don't know if it was medication or placebo, but the whole time I was on it, I kept thinking, This better be a drug. I'll be so mad if it's a placebo and I'm having to suffer through this taste for a whole month! I found that chewing mint gum during the treatment was the only way to tolerate the taste.<br><br>It was a little scary being in the study because it meant going off my regular antibiotic cycle for three months. If I got placebo, it meant three months with no antibiotic coverage. Good news was I didn't get sick during the study. As soon as it was over I went back on my coly/cayston cycle, and haven't needed IV since last January.<br> <br>Martha <br>43 w/CF<br>
L
lifeisgood729
Guest
I did this study last spring. That was the worst tasting stuff I have ever had to nebulize. I still don't know if it was medication or placebo, but the whole time I was on it, I kept thinking, This better be a drug. I'll be so mad if it's a placebo and I'm having to suffer through this taste for a whole month! I found that chewing mint gum during the treatment was the only way to tolerate the taste.<br><br>It was a little scary being in the study because it meant going off my regular antibiotic cycle for three months. If I got placebo, it meant three months with no antibiotic coverage. Good news was I didn't get sick during the study. As soon as it was over I went back on my coly/cayston cycle, and haven't needed IV since last January.<br><br>Martha <br>43 w/CF<br>
L
lifeisgood729
Guest
I did this study last spring. That was the worst tasting stuff I have ever had to nebulize. I still don't know if it was medication or placebo, but the whole time I was on it, I kept thinking, This better be a drug. I'll be so mad if it's a placebo and I'm having to suffer through this taste for a whole month! I found that chewing mint gum during the treatment was the only way to tolerate the taste.<br><br>It was a little scary being in the study because it meant going off my regular antibiotic cycle for three months. If I got placebo, it meant three months with no antibiotic coverage. Good news was I didn't get sick during the study. As soon as it was over I went back on my coly/cayston cycle, and haven't needed IV since last January.<br><br>Martha <br>43 w/CF<br>
L
lizlas
Guest
<P>LTA and Jana YOU ARE SO RIGHT</P>
<P>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquin many mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my ears by IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P> </P>
<P> </P>
<P>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquin many mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my ears by IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P> </P>
<P> </P>
L
lizlas
Guest
<P>LTA and JanaYOU ARE SO RIGHT</P>
<P>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquinmany mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my earsby IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P></P>
<P></P>
<P>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquinmany mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my earsby IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P></P>
<P></P>
L
lizlas
Guest
<P>LTA and JanaYOU ARE SO RIGHT</P>
<P><BR>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquinmany mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my earsby IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P></P>
<P></P>
<P><BR>that is actually the first thing I thot of with the levaquin....I had to quit taking it too, it made my knees and hip joints so sore....it was hard to walk....and I had taken levaquinmany mnay times before with no problems</P>
<P>....thankfully the pain and soreness went away so I wonder if inhaling it wud have same bad effect. I switched to avelox it didnt hurt knees and hips but makes the big joints below wrist throb and pain horribly. it eases sumwhat when im not taking avelox but does not leave entirely</P>
<P>cipro doesnt cause that problem for me , but then it doesnt help my lungs either</P>
<P>I evn had my knees and hips xrayed but nothing showing...dr. said its the levaquin I guarantee it...</P>
<P>levequin avelox and cipro belong to flouroquinilones (sp) </P>
<P>and even after few days or one coarse you can get these symptoms or torn tendons especially the achilles....there have been lawsuits over them,</P>
<P>and apparently you can get these symptons years down the road even if you stopped the drugs along time ago....</P>
<P>and it used to help lungs , but i wont take it...have half a bottle here for 2 yrs but wont take a chance that next time it wont leave.</P>
<P>I inhale amikacin 250 mg BID (twice daily)</P>
<P>but I read somewhere very recently that sumone got the ototoxicy with the ears ringing with inhaling amikacin</P>
<P>amakacin really affected my earsby IV but so far not with inhalation.</P>
<P>but I dont know what dose they were inhaling....</P>
<P>even advair diskus /inhaler can cause same problems like an oral steroid would..</P>
<P></P>
<P></P>
Here is a link to the trial:<br><a target="" title="" href="http://clinicaltrials.gov/ct2/show/record/NCT01180634?term=Levofloxacin&recr=Open&rank=8&show_locs=Y"> http://clinicaltrials.gov/ct2/show/record/NCT01180634?term=Levofloxacin&recr=Open&rank=8&show_locs=Y</a> It's a phase III, placebo-controlled trial. The med is being administered via eFlow.
<br>
<br>This is exciting.
Emily does very well with Levaquin, so if this becomes approved it's very good to know it will be available in a form that may both better target the lungs as well as hopefully?? reduce toxicity to the rest of the body.<br><br>ETA: the other trial comparing Aeroquin to Tobi head to head:<br><a target="" title="" href="http://clinicaltrials.gov/ct2/show/NCT01270347?term=Levofloxacin&recr=Open&rank=12">http://clinicaltrials.gov/ct2/show/NCT01270347?term=Levofloxacin&recr=Open&rank=12</a><br>
<br>
<br>This is exciting.
Emily does very well with Levaquin, so if this becomes approved it's very good to know it will be available in a form that may both better target the lungs as well as hopefully?? reduce toxicity to the rest of the body.<br><br>ETA: the other trial comparing Aeroquin to Tobi head to head:<br><a target="" title="" href="http://clinicaltrials.gov/ct2/show/NCT01270347?term=Levofloxacin&recr=Open&rank=12">http://clinicaltrials.gov/ct2/show/NCT01270347?term=Levofloxacin&recr=Open&rank=12</a><br>