CF doc vs. OB

serendipity730 · Apr 19, 2011

I am TTC and had the same situation. My OB/Gyn (who doesn't know me all that well) said it was okay to stay on all my meds, including Tobi and Colistin. My CF doc said he's prefer I stop Tobi and Colistin. Instead, he is putting me on Cayston, since Azteonam is a category 'B' drug, as is Zithromax and Mucomyst. There isn't really any reason to go off of category B drugs during pregnancy, unless you feel VERY comfortable doing so. Category B drugs have been shown to be safe in animal studies, but there aren't any human studies (which is the case with most meds). Personally, I think it is more important to get you through the pregnancy than worry about some miniscule theoretical risk. Also, inhaled drugs do not enter the blood stream in nearly concentrations that oral or IV meds do.

mamaScarlett · Apr 19, 2011

I consider inhaled drugs to be our best friend! They get right to route of our problem, but there's less in the blood stream for baby. A win/win. Yes there are IVs that are ok for pregnancy. Now we also have Cayston, and we have a few more oral abx that are stronger than we had a few years ago.
As far as what your OB and your Cf doc said about the differing opinions, my only thought was that, remember its your Cf docs job to put your health first. Its your OBs job to put baby and you first. So think about that when taking their advice maybe?
On a side note, remember too that good nutrition right now can make up for ALOT! It will help your body to rely on those drugs less, and combat any of the teeny tiny chances there of drug getting to the baby in the first place. I know the first few months is hard with food and stomach troubles-but do whatever you have to to get loads of protein, fresh veggies, fruits and calories in your body.

mamaScarlett · Apr 19, 2011

I consider inhaled drugs to be our best friend! They get right to route of our problem, but there's less in the blood stream for baby. A win/win. Yes there are IVs that are ok for pregnancy. Now we also have Cayston, and we have a few more oral abx that are stronger than we had a few years ago.
As far as what your OB and your Cf doc said about the differing opinions, my only thought was that, remember its your Cf docs job to put your health first. Its your OBs job to put baby and you first. So think about that when taking their advice maybe?
On a side note, remember too that good nutrition right now can make up for ALOT! It will help your body to rely on those drugs less, and combat any of the teeny tiny chances there of drug getting to the baby in the first place. I know the first few months is hard with food and stomach troubles-but do whatever you have to to get loads of protein, fresh veggies, fruits and calories in your body.

mamaScarlett · Apr 19, 2011

I consider inhaled drugs to be our best friend! They get right to route of our problem, but there's less in the blood stream for baby. A win/win. Yes there are IVs that are ok for pregnancy. Now we also have Cayston, and we have a few more oral abx that are stronger than we had a few years ago.
 As far as what your OB and your Cf doc said about the differing opinions, my only thought was that, remember its your Cf docs job to put your health first. Its your OBs job to put baby and you first. So think about that when taking their advice maybe?
 On a side note, remember too that good nutrition right now can make up for ALOT! It will help your body to rely on those drugs less, and combat any of the teeny tiny chances there of drug getting to the baby in the first place. I know the first few months is hard with food and stomach troubles-but do whatever you have to to get loads of protein, fresh veggies, fruits and calories in your body.

cindylou · Apr 19, 2011

For what it's worth, when I told my doctor that I wanted to try to get pregnant he took me off of TOBI and put me on Cayston instead. So at least my doctor (who is one of the only CF doctors I have talked to who doesn't want pregnant women on TOBI - so I would say he's fairly paranoid!) felt like Cayston was completely safe for pregnancy.

Overall, I might trust your OB more on this one, since they would have more knowledge of how the meds would react with a fetus. If it were me, though, I'd also do a healthy dose of googling! <img src="i/expressions/face-icon-small-wink.gif" border="0">

cindylou · Apr 19, 2011

For what it's worth, when I told my doctor that I wanted to try to get pregnant he took me off of TOBI and put me on Cayston instead. So at least my doctor (who is one of the only CF doctors I have talked to who doesn't want pregnant women on TOBI - so I would say he's fairly paranoid!) felt like Cayston was completely safe for pregnancy.

Overall, I might trust your OB more on this one, since they would have more knowledge of how the meds would react with a fetus. If it were me, though, I'd also do a healthy dose of googling! <img src="i/expressions/face-icon-small-wink.gif" border="0">

cindylou · Apr 19, 2011

For what it's worth, when I told my doctor that I wanted to try to get pregnant he took me off of TOBI and put me on Cayston instead. So at least my doctor (who is one of the only CF doctors I have talked to who doesn't want pregnant women on TOBI - so I would say he's fairly paranoid!) felt like Cayston was completely safe for pregnancy.
 
 Overall, I might trust your OB more on this one, since they would have more knowledge of how the meds would react with a fetus. If it were me, though, I'd also do a healthy dose of googling! <img src="i/expressions/face-icon-small-wink.gif" border="0">

triples15 · Apr 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: serendipity730

I am TTC and had the same situation. My OB/Gyn (who doesn't know me all that well) said it was okay to stay on all my meds, including Tobi and Colistin. My CF doc said he's prefer I stop Tobi and Colistin. Instead, he is putting me on Cayston, since Azteonam is a category 'B' drug, as is Zithromax and Mucomyst. There isn't really any reason to go off of category B drugs during pregnancy, unless you feel VERY comfortable doing so. Category B drugs have been shown to be safe in animal studies, but there aren't any human studies (which is the case with most meds). Personally, I think it is more important to get you through the pregnancy than worry about some miniscule theoretical risk. Also, inhaled drugs do not enter the blood stream in nearly concentrations that oral or IV meds do.</end quote></div>

Thanks for your advice, I really appreciate it. Your comment made me feel a lot better. Ya I was especially confused about being taken off of the 3 class B drugs while told to remain on Qvar, which is class C, and Pulmozyme which is D. Strange. With that being said, I trust my CF doc and have no doubt he has his reasons for the decision but I guess I just don't know the rationale.

To update everyone... I talked to my CF doc and let them know how I was feeling. I told them that, just as they told me he would, the high risk OB had okay'd all three meds they had stopped (Cayston, Zithro, and Mucomyst). They wanted me to double check with the OB and have the OB confirm that I could use them. So I called the OB who confirmed that yes, he feels they are all "fine" to use during pregnancy. So they put a note in my chart for my CF doc to have access to (same hospital) that he ok'd them.

So the current plan per the CF doc is to add back one med at a time and see how I'm feeling. I added back the Mucomyst yesterday and might be feeling a tiny bit clearer already today. It's just really nice to know that we have the option of Cayston and going back on the Zithro. I have a feeling it will come to that so I'm relieved to know everything is now cleared by both docs.

Thanks again to everyone! MamaScarlett, I'm working on the nutrition thing. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I've done pretty poorly in that dept. the past few weeks because of constant extreme nausea. My diet has mostly consisted of cereal, crackers, and apples. Those are about the only things I've been able to consistently get down! Ugh. I've lost a few pounds this first trimester but no one is concerned because luckily I have a few extra pounds to lose safely. lol. I've started feeling less nauseous just the last few days so I've been working on eating a lot better. I'm 12 weeks today so hoping the worst of the nausea is behind me. Fingers crossed.

Cindylou, I always do my fair share of googling! Lol. Sometimes it's my friend and sometimes it's not. I hate reading things I don't want to "hear". <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad to hear your doc thinks Cayston is fine. Sounds like Mary's does too that's reassuring.

Thanks again everyone!

triples15 · Apr 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: serendipity730

I am TTC and had the same situation. My OB/Gyn (who doesn't know me all that well) said it was okay to stay on all my meds, including Tobi and Colistin. My CF doc said he's prefer I stop Tobi and Colistin. Instead, he is putting me on Cayston, since Azteonam is a category 'B' drug, as is Zithromax and Mucomyst. There isn't really any reason to go off of category B drugs during pregnancy, unless you feel VERY comfortable doing so. Category B drugs have been shown to be safe in animal studies, but there aren't any human studies (which is the case with most meds). Personally, I think it is more important to get you through the pregnancy than worry about some miniscule theoretical risk. Also, inhaled drugs do not enter the blood stream in nearly concentrations that oral or IV meds do.</end quote>

Thanks for your advice, I really appreciate it. Your comment made me feel a lot better. Ya I was especially confused about being taken off of the 3 class B drugs while told to remain on Qvar, which is class C, and Pulmozyme which is D. Strange. With that being said, I trust my CF doc and have no doubt he has his reasons for the decision but I guess I just don't know the rationale.

To update everyone... I talked to my CF doc and let them know how I was feeling. I told them that, just as they told me he would, the high risk OB had okay'd all three meds they had stopped (Cayston, Zithro, and Mucomyst). They wanted me to double check with the OB and have the OB confirm that I could use them. So I called the OB who confirmed that yes, he feels they are all "fine" to use during pregnancy. So they put a note in my chart for my CF doc to have access to (same hospital) that he ok'd them.

So the current plan per the CF doc is to add back one med at a time and see how I'm feeling. I added back the Mucomyst yesterday and might be feeling a tiny bit clearer already today. It's just really nice to know that we have the option of Cayston and going back on the Zithro. I have a feeling it will come to that so I'm relieved to know everything is now cleared by both docs.

Thanks again to everyone! MamaScarlett, I'm working on the nutrition thing. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I've done pretty poorly in that dept. the past few weeks because of constant extreme nausea. My diet has mostly consisted of cereal, crackers, and apples. Those are about the only things I've been able to consistently get down! Ugh. I've lost a few pounds this first trimester but no one is concerned because luckily I have a few extra pounds to lose safely. lol. I've started feeling less nauseous just the last few days so I've been working on eating a lot better. I'm 12 weeks today so hoping the worst of the nausea is behind me. Fingers crossed.

Cindylou, I always do my fair share of googling! Lol. Sometimes it's my friend and sometimes it's not. I hate reading things I don't want to "hear". <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad to hear your doc thinks Cayston is fine. Sounds like Mary's does too that's reassuring.

Thanks again everyone!

triples15 · Apr 22, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: serendipity730
 
 I am TTC and had the same situation. My OB/Gyn (who doesn't know me all that well) said it was okay to stay on all my meds, including Tobi and Colistin. My CF doc said he's prefer I stop Tobi and Colistin. Instead, he is putting me on Cayston, since Azteonam is a category 'B' drug, as is Zithromax and Mucomyst. There isn't really any reason to go off of category B drugs during pregnancy, unless you feel VERY comfortable doing so. Category B drugs have been shown to be safe in animal studies, but there aren't any human studies (which is the case with most meds). Personally, I think it is more important to get you through the pregnancy than worry about some miniscule theoretical risk. Also, inhaled drugs do not enter the blood stream in nearly concentrations that oral or IV meds do.</end quote>
 
 
 Thanks for your advice, I really appreciate it. Your comment made me feel a lot better. Ya I was especially confused about being taken off of the 3 class B drugs while told to remain on Qvar, which is class C, and Pulmozyme which is D. Strange. With that being said, I trust my CF doc and have no doubt he has his reasons for the decision but I guess I just don't know the rationale.
 
 To update everyone... I talked to my CF doc and let them know how I was feeling. I told them that, just as they told me he would, the high risk OB had okay'd all three meds they had stopped (Cayston, Zithro, and Mucomyst). They wanted me to double check with the OB and have the OB confirm that I could use them. So I called the OB who confirmed that yes, he feels they are all "fine" to use during pregnancy. So they put a note in my chart for my CF doc to have access to (same hospital) that he ok'd them.
 
 So the current plan per the CF doc is to add back one med at a time and see how I'm feeling. I added back the Mucomyst yesterday and might be feeling a tiny bit clearer already today. It's just really nice to know that we have the option of Cayston and going back on the Zithro. I have a feeling it will come to that so I'm relieved to know everything is now cleared by both docs.
 
 Thanks again to everyone! MamaScarlett, I'm working on the nutrition thing. <img src="i/expressions/face-icon-small-wink.gif" border="0"> I've done pretty poorly in that dept. the past few weeks because of constant extreme nausea. My diet has mostly consisted of cereal, crackers, and apples. Those are about the only things I've been able to consistently get down! Ugh. I've lost a few pounds this first trimester but no one is concerned because luckily I have a few extra pounds to lose safely. lol. I've started feeling less nauseous just the last few days so I've been working on eating a lot better. I'm 12 weeks today so hoping the worst of the nausea is behind me. Fingers crossed.
 
 Cindylou, I always do my fair share of googling! Lol. Sometimes it's my friend and sometimes it's not. I hate reading things I don't want to "hear". <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm glad to hear your doc thinks Cayston is fine. Sounds like Mary's does too that's reassuring.
 
 Thanks again everyone!

mamaScarlett · Apr 22, 2011

Your plan sounds like a good one.
I work with a doula (pregnancy/birth coach) and for my pregnancies she has me on a doula/midwife recommended diet that is basically high protein and non processed foods. My cf doc has praised this diet and asked for info on it to pass on to some other patients for healthy weight gain.
If you ever want more info just pm me. I also had horrible nausea with my 2nd pregnancy, and general food pickiness all through it.

mamaScarlett · Apr 22, 2011

Your plan sounds like a good one.
I work with a doula (pregnancy/birth coach) and for my pregnancies she has me on a doula/midwife recommended diet that is basically high protein and non processed foods. My cf doc has praised this diet and asked for info on it to pass on to some other patients for healthy weight gain.
If you ever want more info just pm me. I also had horrible nausea with my 2nd pregnancy, and general food pickiness all through it.

mamaScarlett · Apr 22, 2011

Your plan sounds like a good one.
 I work with a doula (pregnancy/birth coach) and for my pregnancies she has me on a doula/midwife recommended diet that is basically high protein and non processed foods. My cf doc has praised this diet and asked for info on it to pass on to some other patients for healthy weight gain.
 If you ever want more info just pm me. I also had horrible nausea with my 2nd pregnancy, and general food pickiness all through it.

CF doc vs. OB

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