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PA treatment
- Thread starter gsplover
- Start date
I am glad you asked this question and I will be very interested to
see the responses.<br>
<br>
I have cultured non mucoid PA for many years and do not take tobi.
My doctor has described my PA as "whimpy"
compared to other PA's. He feels that I am stable and does
not want me to become resistent to treatment when I should need it.
<br>
<br>
Since my lung surgery 7 years ago which removed the rest of my left
lung due to chronic hemoptysis I have not been on IV's.
Several times these past 3 years, if I have bleeding, I am
talking about a very small amount less than 1/4 tsp I take Levaquin
or Bactrum for 3 weeks in case an infection is starting otherwise
my meds are advair 100/50 2Xa day, pulmozyme, Albuteral inhalor
before HS 2X a day. I am cultured every 3
months. <br>
My FEV1 is 45, not bad for one lung.
see the responses.<br>
<br>
I have cultured non mucoid PA for many years and do not take tobi.
My doctor has described my PA as "whimpy"
compared to other PA's. He feels that I am stable and does
not want me to become resistent to treatment when I should need it.
<br>
<br>
Since my lung surgery 7 years ago which removed the rest of my left
lung due to chronic hemoptysis I have not been on IV's.
Several times these past 3 years, if I have bleeding, I am
talking about a very small amount less than 1/4 tsp I take Levaquin
or Bactrum for 3 weeks in case an infection is starting otherwise
my meds are advair 100/50 2Xa day, pulmozyme, Albuteral inhalor
before HS 2X a day. I am cultured every 3
months. <br>
My FEV1 is 45, not bad for one lung.
coltsfan715
New member
I culture Psuedo. I am currently on TOBI, but have in the past not been on TOBI due to the side effects (it caused me to cough up blood in High School so I refused to take it). I tried it again just to see if anything happened last year and I had no problems so I am now using it every other month.
When I wasn't taking it I not treated with any antibiotic for the Psuedo. I would get Cipro when I had an infection or the start of one anyway. If I went on IVs I was and am treated with Tobramycin and Fortaz(Ceftazidime).
I have been in Pulmozyme and Albuterol for some time also and those may have helped with the Puesdo (keeping my open and clear for the most part). I am not sure though.
Lindsey
When I wasn't taking it I not treated with any antibiotic for the Psuedo. I would get Cipro when I had an infection or the start of one anyway. If I went on IVs I was and am treated with Tobramycin and Fortaz(Ceftazidime).
I have been in Pulmozyme and Albuterol for some time also and those may have helped with the Puesdo (keeping my open and clear for the most part). I am not sure though.
Lindsey
littletally
New member
I currently take tobi every other month and coly on the off months. I have pa and aspergillis (which sucks because I'm allergic to the aspergillis). I'm also on pulmozyme and albuterol. I guess I've been on tobi for 5 or 6 years I think.
Nikki
26/f/cf
Nikki
26/f/cf
From about birth to the advent of TOBI, I took nebulized Tobra for exacerbations.
I was hospitalized twice from birth to 18 for IV Tobra.
I have been on TOBI since 2000. In 2006 I was declared resistant and I am no longer taking it.
My doc is considering puting me on Colistyn, but wanted to try hypertonic salene 1st to see if he could control my exacerbations.
So far, so good. No TOBI nor Colistyn for me.
But I am on zithro 3 times a week.
I feel so so so blessed that I'm doing ok off TOBI. I was quite worried to be honest.....
So when I get a flare up, I'm anticipating IV antibiotics.
I was hospitalized twice from birth to 18 for IV Tobra.
I have been on TOBI since 2000. In 2006 I was declared resistant and I am no longer taking it.
My doc is considering puting me on Colistyn, but wanted to try hypertonic salene 1st to see if he could control my exacerbations.
So far, so good. No TOBI nor Colistyn for me.
But I am on zithro 3 times a week.
I feel so so so blessed that I'm doing ok off TOBI. I was quite worried to be honest.....
So when I get a flare up, I'm anticipating IV antibiotics.
I have cultured Mucoid PA in the past, but it doesn't show up in my recent cultures. Normally my infections are treated with oral antibiotics (levaquin ??sp or bactrim ??sp) due to my reluctance of going to the hospital & phobia of needles. They have never been treated with TOBI.
My doctor just recently (in March of this year) wanted me to start taking TOBI (nebulized), on one month & off the next. However, he didn't prescribe the TOBI for the PA. He just thought I should take it as a "preventative" measure to help me ward off infections. I tried it (for 3 weeks) and I haven't taken it since. The taste is HORRIBLE. I almost quit my first treatment after the first few puffs. The side effects of TOBI tend to scare me off a little bit. I tend to get paranoid about that kind of stuff. I already have ringing in my ears and I'm afraid that by taking TOBI it will make it worse.
My doctor just recently (in March of this year) wanted me to start taking TOBI (nebulized), on one month & off the next. However, he didn't prescribe the TOBI for the PA. He just thought I should take it as a "preventative" measure to help me ward off infections. I tried it (for 3 weeks) and I haven't taken it since. The taste is HORRIBLE. I almost quit my first treatment after the first few puffs. The side effects of TOBI tend to scare me off a little bit. I tend to get paranoid about that kind of stuff. I already have ringing in my ears and I'm afraid that by taking TOBI it will make it worse.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Allisa35</b></i>
My doctor just recently (in March of this year) wanted me to start taking TOBI (nebulized), on one month & off the next. However, he didn't prescribe the TOBI for the PA. He just thought I should take it as a "preventative" measure to help me ward off infections. I tried it (for 3 weeks) and I haven't taken it since. The taste is HORRIBLE. I almost quit my first treatment after the first few puffs. The side effects of TOBI tend to scare me off a little bit. I tend to get paranoid about that kind of stuff. I already have ringing in my ears and I'm afraid that by taking TOBI it will make it worse.</end quote></div>
He did prescribe the TOBI for the PA. The infection that we wanted to ward off were PA infections <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
My doctor just recently (in March of this year) wanted me to start taking TOBI (nebulized), on one month & off the next. However, he didn't prescribe the TOBI for the PA. He just thought I should take it as a "preventative" measure to help me ward off infections. I tried it (for 3 weeks) and I haven't taken it since. The taste is HORRIBLE. I almost quit my first treatment after the first few puffs. The side effects of TOBI tend to scare me off a little bit. I tend to get paranoid about that kind of stuff. I already have ringing in my ears and I'm afraid that by taking TOBI it will make it worse.</end quote></div>
He did prescribe the TOBI for the PA. The infection that we wanted to ward off were PA infections <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
I do culture PA and am not on Tobi, never have been. I have been on nebulized Colistin for as long as i can remember and am on Zithromax now too for a couple of years.
When Tobi first came on the market a few years ago my doctor didn't want me on it because i was already becoming resistent to a lot of meds and Tobra was still working good with IV's. She was worried that when i would nebulize Tobi, even if it was 4 weeks on 4 weeks off, there was the fear i would become resistent to Tobra and my IV's wouldn't work anymore.
When Tobi first came on the market a few years ago my doctor didn't want me on it because i was already becoming resistent to a lot of meds and Tobra was still working good with IV's. She was worried that when i would nebulize Tobi, even if it was 4 weeks on 4 weeks off, there was the fear i would become resistent to Tobra and my IV's wouldn't work anymore.
the other side of the coin is that TOBI is much more expensive than Colistin. So doctors in socialized medicine countries get slapped on the wrist for prescribing expensive meds. (slapped on the wrist can mean less bonus at the end of the year, less opportunity for merit increase, etc). so be cautious when your doc tells you something.
always follow the money.....
always follow the money.....
wallflower
New member
I used to be on TOBI, but became resistant. Now I just do my normal neb and take 1 Zithromax a day.