Anyone on Fortaz

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pencf

Guest
My daughter just started using Fortaz for inhalation. It tastes like crap but she does it, so I am thankful for that!
This morning is coughed up a bit of blood, emailed team right away. Since we were Just in for Annual Clinic 10 days ago, they know how we are doing overall, which is way better then where we were in the Fall. Everything looks good. Cultures good, just a few of usual things you dont' want, weight up 18pds, blood work, excellent compared to fall. And she feels good.
CF Team agrees, after calling specialist in U of PITT ( who really ordered the use of Fortaz) that sometime starting a new antibiotic in the airway will do that. Cause irritation.
Just want to hear from other folks who have used Fortaz for inhalation, how it is working for you, what type of side effects if anything, just what your experiences have been.
Thanks. I read a lot of what comes up in my emails. I think this community overall is positive and helpful. I appreciate each of your journey's, and just wish we would all get our prayers answered, and see a drug that will help our entire population with every mutation!!!
~Bethann
Mom of Patrick (20) no/CF, and Madeline (soon to be 17) w/ B. cepacia and PA, o2 at night, FEV1 30%
 
P

pencf

Guest
My daughter just started using Fortaz for inhalation. It tastes like crap but she does it, so I am thankful for that!
This morning is coughed up a bit of blood, emailed team right away. Since we were Just in for Annual Clinic 10 days ago, they know how we are doing overall, which is way better then where we were in the Fall. Everything looks good. Cultures good, just a few of usual things you dont' want, weight up 18pds, blood work, excellent compared to fall. And she feels good.
CF Team agrees, after calling specialist in U of PITT ( who really ordered the use of Fortaz) that sometime starting a new antibiotic in the airway will do that. Cause irritation.
Just want to hear from other folks who have used Fortaz for inhalation, how it is working for you, what type of side effects if anything, just what your experiences have been.
Thanks. I read a lot of what comes up in my emails. I think this community overall is positive and helpful. I appreciate each of your journey's, and just wish we would all get our prayers answered, and see a drug that will help our entire population with every mutation!!!
~Bethann
Mom of Patrick (20) no/CF, and Madeline (soon to be 17) w/ B. cepacia and PA, o2 at night, FEV1 30%
 
I

Incomudrox

New member
Is your clinic Pitt UPMC? or is it A.I. DuPont in Wilmington? or CHOP in Philly? IF you don't want to publicly say can you PLEASE PM I am very curious to know.

When I went to UPMC (U of Pitt) Weinberg put me on inhaled Fortaz and it is without a doubt the BEST STUFF ON EARTH! That being said, I did cough blood initially, it should go away, after a few days. Should being to feel better soon.
 
I

Incomudrox

New member
Is your clinic Pitt UPMC? or is it A.I. DuPont in Wilmington? or CHOP in Philly? IF you don't want to publicly say can you PLEASE PM I am very curious to know.

When I went to UPMC (U of Pitt) Weinberg put me on inhaled Fortaz and it is without a doubt the BEST STUFF ON EARTH! That being said, I did cough blood initially, it should go away, after a few days. Should being to feel better soon.
 
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markinohio

New member
Just over a year ago, I went to UPMC to start my transplant evaluation. I'm still not sick enough to get transplanted yet, but the process has been started. Anyway, the doctor there, Dr. Pilewski, suggested I start inhaled Fortaz instead of TOBI. I've been on Fortaz for over a year and I think it's been helpful. My PFT's are higher now than they have been in the past few years. I really haven't had any sides effects that I remember. And yes, it does taste horrilble, but I think it's worth it if it improves my health.

Mark, age 43
 
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markinohio

New member
Just over a year ago, I went to UPMC to start my transplant evaluation. I'm still not sick enough to get transplanted yet, but the process has been started. Anyway, the doctor there, Dr. Pilewski, suggested I start inhaled Fortaz instead of TOBI. I've been on Fortaz for over a year and I think it's been helpful. My PFT's are higher now than they have been in the past few years. I really haven't had any sides effects that I remember. And yes, it does taste horrilble, but I think it's worth it if it improves my health.

Mark, age 43
 
C

catalinaohara

New member
I've been using Fortaz for almost 6 years continuously. Which is kind of weird but i love the stuff so much, and it changed my LIFE, that i dont want to stop it, ever.

Before it, I couldnt even feel like I could cough stuff up easily. It would take 2 hours in the morning of coughing so hard to feel like my day was started and then even though I wouldn't cough the rest of the day, I felt exhausted by the whole process. Fortaz, or cephtaz, made that whole thing much easier. Tobi and other inhaled solutions that were saline based as opposed to sterile water, never worked for me unfortunately. I would get incredibly irritated, lose my voice horribly, and not feel any better. I even developed nodes on my voicebox from them. So the cephtaz was one amazing inhaled med that worked for me.

I do have b cepacia. And i do cough up blood from time to time, a lot over the years. it doesnt necessarily indicate an acute exacerbation for me, i have found. its usually just related to irritation or stress or dehydration, plus the fact that, with cepacia, i always have osme sort of low level infection going on.

let me know if you have any other questions

caitlin
28 w/ cf b. cepacia

ps by the way, i am seen in boston but i have been evaluated at upmc for lung tx (a year and a half ago now, just preemptively, still not listed, but the team was great)
 
C

catalinaohara

New member
I've been using Fortaz for almost 6 years continuously. Which is kind of weird but i love the stuff so much, and it changed my LIFE, that i dont want to stop it, ever.

Before it, I couldnt even feel like I could cough stuff up easily. It would take 2 hours in the morning of coughing so hard to feel like my day was started and then even though I wouldn't cough the rest of the day, I felt exhausted by the whole process. Fortaz, or cephtaz, made that whole thing much easier. Tobi and other inhaled solutions that were saline based as opposed to sterile water, never worked for me unfortunately. I would get incredibly irritated, lose my voice horribly, and not feel any better. I even developed nodes on my voicebox from them. So the cephtaz was one amazing inhaled med that worked for me.

I do have b cepacia. And i do cough up blood from time to time, a lot over the years. it doesnt necessarily indicate an acute exacerbation for me, i have found. its usually just related to irritation or stress or dehydration, plus the fact that, with cepacia, i always have osme sort of low level infection going on.

let me know if you have any other questions

caitlin
28 w/ cf b. cepacia

ps by the way, i am seen in boston but i have been evaluated at upmc for lung tx (a year and a half ago now, just preemptively, still not listed, but the team was great)
 
G

Gorf

Guest
I didn't even know Fortaz was an inhalation med. I used it years ago till I got an allergie to it(IV Med). Been declining for awhile now. Confinced DOctor totry me on it again. Started with rash, was able to control it with 10mg of steriods. I felt better than I had in a while after my 3 week stay, and only on the FOrtaz for 1 week and 2 days of that.
 
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Gorf

Guest
I didn't even know Fortaz was an inhalation med. I used it years ago till I got an allergie to it(IV Med). Been declining for awhile now. Confinced DOctor totry me on it again. Started with rash, was able to control it with 10mg of steriods. I felt better than I had in a while after my 3 week stay, and only on the FOrtaz for 1 week and 2 days of that.
 
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Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gorf</b></i> I didn't even know Fortaz was an inhalation med. I used it years ago till I got an allergie to it(IV Med). Been declining for awhile now. Confinced DOctor totry me on it again. Started with rash, was able to control it with 10mg of steriods. I felt better than I had in a while after my 3 week stay, and only on the FOrtaz for 1 week and 2 days of that.</end quote>
It isn't, technically. We use it off-label. Nebbed colistin is another example of off-label use.
 
H

Havoc

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Gorf</b></i> I didn't even know Fortaz was an inhalation med. I used it years ago till I got an allergie to it(IV Med). Been declining for awhile now. Confinced DOctor totry me on it again. Started with rash, was able to control it with 10mg of steriods. I felt better than I had in a while after my 3 week stay, and only on the FOrtaz for 1 week and 2 days of that.</end quote>
It isn't, technically. We use it off-label. Nebbed colistin is another example of off-label use.
 
P

pencf

Guest
THANK YOU EVERYONE!!!! This has been very helpful! My daughter hasn't made a real comment as to if she feels better or not, but it has only been 7 days. We went to U of PITT for a Pre-Eval (basically our CF Team in DE begged him to see us) And yes it was Dr. Pilewski (who I thought was outstanding). Luckily our daughter is not "sick enough" (GOD how I hate saying that!!!!!!!) for a full evaluation and Dr. Pilewski wanted to throw everything he had at her to get the B. Cepacia to quiet down (after being on Bactrim full time 24/7/365 since Jan.) culture from 2 wks ago saw NO CEPACIA and few mucoid PA. So can not complain! If the Fortaz can pull of PFT's, then I will be doing the HAPPY DANCE!!!
Please if anyone else has anything to add, I would love to hear more. No more coughing up Blood btw, we started reconstituting with 4 ml saline instead of 3ml, we are thinking for us, that's the ticket!
 
P

pencf

Guest
THANK YOU EVERYONE!!!! This has been very helpful! My daughter hasn't made a real comment as to if she feels better or not, but it has only been 7 days. We went to U of PITT for a Pre-Eval (basically our CF Team in DE begged him to see us) And yes it was Dr. Pilewski (who I thought was outstanding). Luckily our daughter is not "sick enough" (GOD how I hate saying that!!!!!!!) for a full evaluation and Dr. Pilewski wanted to throw everything he had at her to get the B. Cepacia to quiet down (after being on Bactrim full time 24/7/365 since Jan.) culture from 2 wks ago saw NO CEPACIA and few mucoid PA. So can not complain! If the Fortaz can pull of PFT's, then I will be doing the HAPPY DANCE!!!
Please if anyone else has anything to add, I would love to hear more. No more coughing up Blood btw, we started reconstituting with 4 ml saline instead of 3ml, we are thinking for us, that's the ticket!
 
M

MMBinNC

New member
Good for you that you found something that works. If the hemoptysis is under control I'd continue as well. Nebulized medications are always better for us because you get a really high concentration of the medicine in the affected mucus.

I have a question though. Where do you get your Fortaz for inhalation from? PSI does not accept my BCBS insurance so we are trying to find another specialty pharmacy.
 
M

MMBinNC

New member
Good for you that you found something that works. If the hemoptysis is under control I'd continue as well. Nebulized medications are always better for us because you get a really high concentration of the medicine in the affected mucus.

I have a question though. Where do you get your Fortaz for inhalation from? PSI does not accept my BCBS insurance so we are trying to find another specialty pharmacy.
 
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sunshine39656

Member
I have a question about this inhaled Fortaz. I culter the B Cepacia bateria from time to time, and I've done the IV Fortaz because this is pretty much the only medicine the bacteria is sensitive to. Is the inhaled Fortaz as good as the IV Fortaz? Is this something I should ask my doctor about? Where do you get the inhaled Fortaz?
 
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sunshine39656

Member
I have a question about this inhaled Fortaz. I culter the B Cepacia bateria from time to time, and I've done the IV Fortaz because this is pretty much the only medicine the bacteria is sensitive to. Is the inhaled Fortaz as good as the IV Fortaz? Is this something I should ask my doctor about? Where do you get the inhaled Fortaz?
 
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