Tobi and PRegnancy

H

hopeforever601

New member
Just wondering how many women have cut Tobi from their routine while pregnant and how many stayed on while pregnant!

Please share with me:

1) Did you stay on Tobi or not
2) How did it affect your pfts if you chose not to
3) Does anyone know when a fetus develops hearing so I can possibly avoid Tobi that month?
4) If you stayed on Tobi did your child have any side effects from it!

Thanks so much!

Kelly
 
H

hopeforever601

New member
Just wondering how many women have cut Tobi from their routine while pregnant and how many stayed on while pregnant!

Please share with me:

1) Did you stay on Tobi or not
2) How did it affect your pfts if you chose not to
3) Does anyone know when a fetus develops hearing so I can possibly avoid Tobi that month?
4) If you stayed on Tobi did your child have any side effects from it!

Thanks so much!

Kelly
 
H

hopeforever601

New member
Just wondering how many women have cut Tobi from their routine while pregnant and how many stayed on while pregnant!

Please share with me:

1) Did you stay on Tobi or not
2) How did it affect your pfts if you chose not to
3) Does anyone know when a fetus develops hearing so I can possibly avoid Tobi that month?
4) If you stayed on Tobi did your child have any side effects from it!

Thanks so much!

Kelly
 
L

LouLou

New member
1) Yes
2) My pft's have remained stable
3) I'm not sure it can be isolated like this. May be an ongoing exposure level.
4) Unknown - baby due this summer

Some other things to consider. You could go on a less rigorous treatment cycle with Tobi. On 6 weeks/off 6 weeks instead of the usual 4. My doctor wanted to do this the first half of pregnancy but I always seemed to catch a little cold just as we were getting ready to go those extra 2 weeks so I have continued on 4/off 4.

I did have my peak Tobra levels checked after being on Tobi for 20 days. I was concerned that maybe I (and my baby) were getting more of the drug than trials showed entering the bloodstream because I suffer from hemoptysis. It was very relieving to see that my levels were actually well below the norm for being on Tobi. I believe they expect to see 0.8 in the bloodstream and I only had 0.2. According to my doctors, even at 0.8 fetus' hearing isn't effected. Of course, this is only from their experience. In the PI it does list this as a risk. I'm sure you're aware though that tests are never run on pregnant humans. Data is extrapolated from other animals as well as side effects that show up in clinical trials. I have never heard of anyone on this site that stayed on Tobi during pregnancy having a child with decreased hearing function.

All that being said, if you can go without it, of course, that's best.
 
L

LouLou

New member
1) Yes
2) My pft's have remained stable
3) I'm not sure it can be isolated like this. May be an ongoing exposure level.
4) Unknown - baby due this summer

Some other things to consider. You could go on a less rigorous treatment cycle with Tobi. On 6 weeks/off 6 weeks instead of the usual 4. My doctor wanted to do this the first half of pregnancy but I always seemed to catch a little cold just as we were getting ready to go those extra 2 weeks so I have continued on 4/off 4.

I did have my peak Tobra levels checked after being on Tobi for 20 days. I was concerned that maybe I (and my baby) were getting more of the drug than trials showed entering the bloodstream because I suffer from hemoptysis. It was very relieving to see that my levels were actually well below the norm for being on Tobi. I believe they expect to see 0.8 in the bloodstream and I only had 0.2. According to my doctors, even at 0.8 fetus' hearing isn't effected. Of course, this is only from their experience. In the PI it does list this as a risk. I'm sure you're aware though that tests are never run on pregnant humans. Data is extrapolated from other animals as well as side effects that show up in clinical trials. I have never heard of anyone on this site that stayed on Tobi during pregnancy having a child with decreased hearing function.

All that being said, if you can go without it, of course, that's best.
 
L

LouLou

New member
1) Yes
2) My pft's have remained stable
3) I'm not sure it can be isolated like this. May be an ongoing exposure level.
4) Unknown - baby due this summer

Some other things to consider. You could go on a less rigorous treatment cycle with Tobi. On 6 weeks/off 6 weeks instead of the usual 4. My doctor wanted to do this the first half of pregnancy but I always seemed to catch a little cold just as we were getting ready to go those extra 2 weeks so I have continued on 4/off 4.

I did have my peak Tobra levels checked after being on Tobi for 20 days. I was concerned that maybe I (and my baby) were getting more of the drug than trials showed entering the bloodstream because I suffer from hemoptysis. It was very relieving to see that my levels were actually well below the norm for being on Tobi. I believe they expect to see 0.8 in the bloodstream and I only had 0.2. According to my doctors, even at 0.8 fetus' hearing isn't effected. Of course, this is only from their experience. In the PI it does list this as a risk. I'm sure you're aware though that tests are never run on pregnant humans. Data is extrapolated from other animals as well as side effects that show up in clinical trials. I have never heard of anyone on this site that stayed on Tobi during pregnancy having a child with decreased hearing function.

All that being said, if you can go without it, of course, that's best.
 
W

Wendy

Guest
I took Tobi in my first pregnancy for months 5,7, and 9 after a hospital clean out. Since I was not taking it before this pregnancy, I have not started it during it. However, the maternal/fetal OBGYN (high risk OB) that my CF center referred me to has reminded me every month that it is safe for me to take and that she advises all her patients to continue taking it for the whole pregnancy. So, it is safe. I just didn't start it because I was not already taking it. Hope this helps.
 
W

Wendy

Guest
I took Tobi in my first pregnancy for months 5,7, and 9 after a hospital clean out. Since I was not taking it before this pregnancy, I have not started it during it. However, the maternal/fetal OBGYN (high risk OB) that my CF center referred me to has reminded me every month that it is safe for me to take and that she advises all her patients to continue taking it for the whole pregnancy. So, it is safe. I just didn't start it because I was not already taking it. Hope this helps.
 
W

Wendy

Guest
I took Tobi in my first pregnancy for months 5,7, and 9 after a hospital clean out. Since I was not taking it before this pregnancy, I have not started it during it. However, the maternal/fetal OBGYN (high risk OB) that my CF center referred me to has reminded me every month that it is safe for me to take and that she advises all her patients to continue taking it for the whole pregnancy. So, it is safe. I just didn't start it because I was not already taking it. Hope this helps.
 
W

Wendy

Guest
Oh, I forgot to add that my pfts have remained the same during this pregnancy so far. I had a little slip in my numbers with a cold, but they returned to my pre-pregnancy base a few weeks later. I go for my next clinic visit next week and I'll be 37 weeks, so we will see how I'm doing then.
 
W

Wendy

Guest
Oh, I forgot to add that my pfts have remained the same during this pregnancy so far. I had a little slip in my numbers with a cold, but they returned to my pre-pregnancy base a few weeks later. I go for my next clinic visit next week and I'll be 37 weeks, so we will see how I'm doing then.
 
W

Wendy

Guest
Oh, I forgot to add that my pfts have remained the same during this pregnancy so far. I had a little slip in my numbers with a cold, but they returned to my pre-pregnancy base a few weeks later. I go for my next clinic visit next week and I'll be 37 weeks, so we will see how I'm doing then.
 
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