CF doc vs. OB

T

triples15

Super Moderator
Hi everyone,

I'm now 11 weeks pregnant. When we first found out I was pregnant at 4 weeks my CF doc told me to stop Zithromax (M-W-F), Cayston (which i was cycling), and Mucomyst. I'm one of the few people that neb Mucomyst because I insist it helps me move more than Hypertonic saline.

My regular OB told me she felt it was safe to continue taking ALL my meds and that she didn't feel it was necessary to discontinue any of them. We had a consult with the high-risk OB last week, who also said he feels I could/should continue all my meds. Ugh...confusing.

Well basically I was happy to stay off of those meds while I wasn't feeling the effects of stopping them. However, within the last week or so I have started feeling more wheezy, short of breath, and just more congested in general. I don't necessarily feel sick, just a small decline that I feel like i better keep in check. I'm thinking I'd sure like to add my back my meds, especially since both OB's think it's safe.

I plan on calling the doctor tomorrow and letting them know how I'm feeling and maybe lobby to restart the meds they've taken me off of.

What do you guys think about the conflicting opinions? Did you hear different things from your OB vs. Cf docs and who do you ultimately go with?
 
T

triples15

Super Moderator
Hi everyone,

I'm now 11 weeks pregnant. When we first found out I was pregnant at 4 weeks my CF doc told me to stop Zithromax (M-W-F), Cayston (which i was cycling), and Mucomyst. I'm one of the few people that neb Mucomyst because I insist it helps me move more than Hypertonic saline.

My regular OB told me she felt it was safe to continue taking ALL my meds and that she didn't feel it was necessary to discontinue any of them. We had a consult with the high-risk OB last week, who also said he feels I could/should continue all my meds. Ugh...confusing.

Well basically I was happy to stay off of those meds while I wasn't feeling the effects of stopping them. However, within the last week or so I have started feeling more wheezy, short of breath, and just more congested in general. I don't necessarily feel sick, just a small decline that I feel like i better keep in check. I'm thinking I'd sure like to add my back my meds, especially since both OB's think it's safe.

I plan on calling the doctor tomorrow and letting them know how I'm feeling and maybe lobby to restart the meds they've taken me off of.

What do you guys think about the conflicting opinions? Did you hear different things from your OB vs. Cf docs and who do you ultimately go with?
 
T

triples15

Super Moderator
Hi everyone,
<br />
<br />I'm now 11 weeks pregnant. When we first found out I was pregnant at 4 weeks my CF doc told me to stop Zithromax (M-W-F), Cayston (which i was cycling), and Mucomyst. I'm one of the few people that neb Mucomyst because I insist it helps me move more than Hypertonic saline.
<br />
<br />My regular OB told me she felt it was safe to continue taking ALL my meds and that she didn't feel it was necessary to discontinue any of them. We had a consult with the high-risk OB last week, who also said he feels I could/should continue all my meds. Ugh...confusing.
<br />
<br />Well basically I was happy to stay off of those meds while I wasn't feeling the effects of stopping them. However, within the last week or so I have started feeling more wheezy, short of breath, and just more congested in general. I don't necessarily feel sick, just a small decline that I feel like i better keep in check. I'm thinking I'd sure like to add my back my meds, especially since both OB's think it's safe.
<br />
<br />I plan on calling the doctor tomorrow and letting them know how I'm feeling and maybe lobby to restart the meds they've taken me off of.
<br />
<br />What do you guys think about the conflicting opinions? Did you hear different things from your OB vs. Cf docs and who do you ultimately go with?
 
M

marisalynn

New member
That's a tough one! I had a similar situation, I am 12 weeks and my OB was fine keeping me on most of my meds, but my CF doc told me to stop Tobi and Colistin. I felt the same as you that I was happy to stay off of them, especially if my CF doc was okay with it. I am hoping to be able to hold out as long as I can, but I wouldn't be surprised if I end up back on them before the end of the pregnancy. I would make sure it's okay with everyone before you start back on them, though. Good luck with the rest of your pregnancy, and I hope you start feeling better soon!

Marisa 23 w/CF
 
M

marisalynn

New member
That's a tough one! I had a similar situation, I am 12 weeks and my OB was fine keeping me on most of my meds, but my CF doc told me to stop Tobi and Colistin. I felt the same as you that I was happy to stay off of them, especially if my CF doc was okay with it. I am hoping to be able to hold out as long as I can, but I wouldn't be surprised if I end up back on them before the end of the pregnancy. I would make sure it's okay with everyone before you start back on them, though. Good luck with the rest of your pregnancy, and I hope you start feeling better soon!

Marisa 23 w/CF
 
M

marisalynn

New member
That's a tough one! I had a similar situation, I am 12 weeks and my OB was fine keeping me on most of my meds, but my CF doc told me to stop Tobi and Colistin. I felt the same as you that I was happy to stay off of them, especially if my CF doc was okay with it. I am hoping to be able to hold out as long as I can, but I wouldn't be surprised if I end up back on them before the end of the pregnancy. I would make sure it's okay with everyone before you start back on them, though. Good luck with the rest of your pregnancy, and I hope you start feeling better soon!
<br />
<br />Marisa 23 w/CF
 
R

rubyroselee

New member
Hi Autumn,

It's such a pain when the doctors make things so confusing. Although, I had the opposite problem - my CF doctor wanted me on the meds, and my OB wanted me off of them. But after I did research on my own, usually the inhaled antibiotics don't make it into the bloodstream, so the pregnancy risk category really isn't accurate when taken the inhaled route. But IV's are a different story. I continued to take eFlow tobramycin throughout my pregnancy, although I did not take Zithro until after I had the baby.

The key thing is that it's important to keep YOU healthy just as much as the baby, so it's always a balance. For me, coming off of tobramycin would have been detrimental to my health, so I wasn't willing to come off it. I thought the benefit outweighed the risk (being that it was inhaled and likely not a risk to baby).

Sometimes it's a good idea to get your two doctors communicating with each other. My CF doctor was more than willing to work directly with my OB. That way they can determine what is safe for you to take and what isn't, without causing you all the confusion.

Good luck!
 
R

rubyroselee

New member
Hi Autumn,

It's such a pain when the doctors make things so confusing. Although, I had the opposite problem - my CF doctor wanted me on the meds, and my OB wanted me off of them. But after I did research on my own, usually the inhaled antibiotics don't make it into the bloodstream, so the pregnancy risk category really isn't accurate when taken the inhaled route. But IV's are a different story. I continued to take eFlow tobramycin throughout my pregnancy, although I did not take Zithro until after I had the baby.

The key thing is that it's important to keep YOU healthy just as much as the baby, so it's always a balance. For me, coming off of tobramycin would have been detrimental to my health, so I wasn't willing to come off it. I thought the benefit outweighed the risk (being that it was inhaled and likely not a risk to baby).

Sometimes it's a good idea to get your two doctors communicating with each other. My CF doctor was more than willing to work directly with my OB. That way they can determine what is safe for you to take and what isn't, without causing you all the confusion.

Good luck!
 
R

rubyroselee

New member
Hi Autumn,
<br />
<br />It's such a pain when the doctors make things so confusing. Although, I had the opposite problem - my CF doctor wanted me on the meds, and my OB wanted me off of them. But after I did research on my own, usually the inhaled antibiotics don't make it into the bloodstream, so the pregnancy risk category really isn't accurate when taken the inhaled route. But IV's are a different story. I continued to take eFlow tobramycin throughout my pregnancy, although I did not take Zithro until after I had the baby.
<br />
<br />The key thing is that it's important to keep YOU healthy just as much as the baby, so it's always a balance. For me, coming off of tobramycin would have been detrimental to my health, so I wasn't willing to come off it. I thought the benefit outweighed the risk (being that it was inhaled and likely not a risk to baby).
<br />
<br />Sometimes it's a good idea to get your two doctors communicating with each other. My CF doctor was more than willing to work directly with my OB. That way they can determine what is safe for you to take and what isn't, without causing you all the confusion.
<br />
<br />Good luck!
 
K

Kristen

New member
You can also call the infant risk center - it's run by Dr. Hale, who is considered the authority on the safety of medications while pregnant and breastfeeding. The infant risk center compiles all the research on the safety of meds while pregnant and breastfeeding. Your OB probably knows who he is, but your CF doctor may not (mine didn't).

I just found out about them through my lactation consultant. I called because I was getting conflicting info about the safety of Tobra and nursing - my CF said it wasn't safe, my pediatrician said it was. So I called the infant risk center and they faxed some info over to my CF doctor.

Their website (and phone number) is located here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.infantrisk.com/">http://www.infantrisk.com/</a>
 
K

Kristen

New member
You can also call the infant risk center - it's run by Dr. Hale, who is considered the authority on the safety of medications while pregnant and breastfeeding. The infant risk center compiles all the research on the safety of meds while pregnant and breastfeeding. Your OB probably knows who he is, but your CF doctor may not (mine didn't).

I just found out about them through my lactation consultant. I called because I was getting conflicting info about the safety of Tobra and nursing - my CF said it wasn't safe, my pediatrician said it was. So I called the infant risk center and they faxed some info over to my CF doctor.

Their website (and phone number) is located here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.infantrisk.com/">http://www.infantrisk.com/</a>
 
K

Kristen

New member
You can also call the infant risk center - it's run by Dr. Hale, who is considered the authority on the safety of medications while pregnant and breastfeeding. The infant risk center compiles all the research on the safety of meds while pregnant and breastfeeding. Your OB probably knows who he is, but your CF doctor may not (mine didn't).
<br />
<br />I just found out about them through my lactation consultant. I called because I was getting conflicting info about the safety of Tobra and nursing - my CF said it wasn't safe, my pediatrician said it was. So I called the infant risk center and they faxed some info over to my CF doctor.
<br />
<br />Their website (and phone number) is located here: <a target=_blank class=ftalternatingbarlinklarge href="http://www.infantrisk.com/">http://www.infantrisk.com/</a>
 
M

mamaScarlett

Active member
Yes I was in the same position several times with my first pregnancy. With my 2nd, I just know the ropes better and there are less issues on drug safety.
It was a huge help to have my Cf doc and my then-OB communicate alot together. But I did have to speak up at times.
I found that my OB was much less concerned about my meds than my Cf doc was. My Cf doc is conservative in general about pregnancy and meds. I'm very conservative too, and worked really hard to plan my pregnancy so I'd need as little medication as possible, but I did ALOT to compensate for that. (like quitting my job to be at home resting as much as possible, strict chest pt routine, strict nutrition routine) Of course, me being healthy was/is as crucial as baby being healthy because if I can't get enough oxygen in-baby can't either! And no matter what we do, we just need meds, thats the way it is.
I've found that it is a delicate balance. I took a bit from my Cf docs, a bit from my OB, and from my own research, and really just tried to do what my gut told me.
I'm very 'natural' oriented when it comes to pregnancy and birth. However, I won't put all my weight on one source. For example, when considering Dr. Hale-I think he (and lactation consultants) are the # source for medication safety. But, its important to remember that they are thinking in terms of the average dose of med for an average woman, and their research is only looking at that one med per case. Most of us are on abx long term, at higher doses, and we don't take just one medication. We take up to 10! Thats just not the same as a typical woman taking a course of abx once while she's BF or preg.
So again, its balance. I'm not at all saying to stop your meds. I tried to be a bit cavalier early on in my 2nd pregnancy and stop some meds, which came back to bite me in the butt. It was a good reminder that a modest amount of meds, coupled with ALOT of rest, and ALOT of chest pt and a crazy amount of good nutrition is better than A.taking every med under the sun and dealing with alot of risk and worry or B.taking nothing and ending up being away from my baby in the hospital bc my poor body is so run down.

This has been a really helpful website for drug safety in preg. Just click on the link and then classification of drugs to find info on a specific drug you are interested in.
<a target=_blank class=ftalternatingbarlinklarge href="http://drugsafetysite.com/
">http://drugsafetysite.com/
</a>
As for breastfeeding (which is a totally separate issue to pregnancy drug safety), Dr. Hale's website and book is great. And <a target=_blank class=ftalternatingbarlinklarge href="http://www.kellymom.com/">http://www.kellymom.com/</a> is great too.
Another great resource on drugs would be contacting whomever you decide to pick for the babys pediatrician. There's a 3rd opinion for you.
 
M

mamaScarlett

Active member
Yes I was in the same position several times with my first pregnancy. With my 2nd, I just know the ropes better and there are less issues on drug safety.
It was a huge help to have my Cf doc and my then-OB communicate alot together. But I did have to speak up at times.
I found that my OB was much less concerned about my meds than my Cf doc was. My Cf doc is conservative in general about pregnancy and meds. I'm very conservative too, and worked really hard to plan my pregnancy so I'd need as little medication as possible, but I did ALOT to compensate for that. (like quitting my job to be at home resting as much as possible, strict chest pt routine, strict nutrition routine) Of course, me being healthy was/is as crucial as baby being healthy because if I can't get enough oxygen in-baby can't either! And no matter what we do, we just need meds, thats the way it is.
I've found that it is a delicate balance. I took a bit from my Cf docs, a bit from my OB, and from my own research, and really just tried to do what my gut told me.
I'm very 'natural' oriented when it comes to pregnancy and birth. However, I won't put all my weight on one source. For example, when considering Dr. Hale-I think he (and lactation consultants) are the # source for medication safety. But, its important to remember that they are thinking in terms of the average dose of med for an average woman, and their research is only looking at that one med per case. Most of us are on abx long term, at higher doses, and we don't take just one medication. We take up to 10! Thats just not the same as a typical woman taking a course of abx once while she's BF or preg.
So again, its balance. I'm not at all saying to stop your meds. I tried to be a bit cavalier early on in my 2nd pregnancy and stop some meds, which came back to bite me in the butt. It was a good reminder that a modest amount of meds, coupled with ALOT of rest, and ALOT of chest pt and a crazy amount of good nutrition is better than A.taking every med under the sun and dealing with alot of risk and worry or B.taking nothing and ending up being away from my baby in the hospital bc my poor body is so run down.

This has been a really helpful website for drug safety in preg. Just click on the link and then classification of drugs to find info on a specific drug you are interested in.
<a target=_blank class=ftalternatingbarlinklarge href="http://drugsafetysite.com/
">http://drugsafetysite.com/
</a>
As for breastfeeding (which is a totally separate issue to pregnancy drug safety), Dr. Hale's website and book is great. And <a target=_blank class=ftalternatingbarlinklarge href="http://www.kellymom.com/">http://www.kellymom.com/</a> is great too.
Another great resource on drugs would be contacting whomever you decide to pick for the babys pediatrician. There's a 3rd opinion for you.
 
M

mamaScarlett

Active member
Yes I was in the same position several times with my first pregnancy. With my 2nd, I just know the ropes better and there are less issues on drug safety.
<br />It was a huge help to have my Cf doc and my then-OB communicate alot together. But I did have to speak up at times.
<br />I found that my OB was much less concerned about my meds than my Cf doc was. My Cf doc is conservative in general about pregnancy and meds. I'm very conservative too, and worked really hard to plan my pregnancy so I'd need as little medication as possible, but I did ALOT to compensate for that. (like quitting my job to be at home resting as much as possible, strict chest pt routine, strict nutrition routine) Of course, me being healthy was/is as crucial as baby being healthy because if I can't get enough oxygen in-baby can't either! And no matter what we do, we just need meds, thats the way it is.
<br />I've found that it is a delicate balance. I took a bit from my Cf docs, a bit from my OB, and from my own research, and really just tried to do what my gut told me.
<br />I'm very 'natural' oriented when it comes to pregnancy and birth. However, I won't put all my weight on one source. For example, when considering Dr. Hale-I think he (and lactation consultants) are the # source for medication safety. But, its important to remember that they are thinking in terms of the average dose of med for an average woman, and their research is only looking at that one med per case. Most of us are on abx long term, at higher doses, and we don't take just one medication. We take up to 10! Thats just not the same as a typical woman taking a course of abx once while she's BF or preg.
<br />So again, its balance. I'm not at all saying to stop your meds. I tried to be a bit cavalier early on in my 2nd pregnancy and stop some meds, which came back to bite me in the butt. It was a good reminder that a modest amount of meds, coupled with ALOT of rest, and ALOT of chest pt and a crazy amount of good nutrition is better than A.taking every med under the sun and dealing with alot of risk and worry or B.taking nothing and ending up being away from my baby in the hospital bc my poor body is so run down.
<br />
<br />This has been a really helpful website for drug safety in preg. Just click on the link and then classification of drugs to find info on a specific drug you are interested in.
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://drugsafetysite.com/
<br />">http://drugsafetysite.com/
<br /></a>
<br />As for breastfeeding (which is a totally separate issue to pregnancy drug safety), Dr. Hale's website and book is great. And <a target=_blank class=ftalternatingbarlinklarge href="http://www.kellymom.com/">http://www.kellymom.com/</a> is great too.
<br />Another great resource on drugs would be contacting whomever you decide to pick for the babys pediatrician. There's a 3rd opinion for you.
 
T

triples15

Super Moderator
Thanks so much everybody! Marisa, I knew I was right behind you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out I was pregnant a couple days after you posted your positive pregnancy test news!

Thanks for the resources. I may call the Infant Risk Center. I'm also thinking of making a trip to Barnes & Noble and buying Dr. Hale's book today. Does it have a lot of information about pregnancy too? I'm wondering if it is only about breastfeeding since the title is Medications and Mothers Milk.

I'm kind of a bum and didn't get my doctor called today. I guess I'm kinda nervous about what the plan of action will be. I did just email them though so I will have a response tomorrow. I like emailing better sometimes because I feel like I can articulate what exactly is going on more effectively than on the phone.

I guess the weirdest thing about this non-consensus on meds is that my OBs (both reg and high risk)do work directly with my CF doc. The high risk doctor is the one they send all of their CF patients to and he is considered the expert. They are all at the University Med Center I go to. My CF doctor flat out told me that when I went to see the OB he would tell me I could take the meds that the CF doc had taken me off. The OB told me that he knew the CF doc would take me off of them, but that he feel I can stay on all of them without changing anything. They basically just come right out and say they blatantly disagree. So I'm like, "great"! The high risk OB was going to send a report to my CF team I guess basically saying that he feels I can continue on the meds. I haven't talked to my CF team since that time. So maybe when I hear from them tomorrow there will be some sort of consensus, but I doubt it.

Thanks so much again for the support and advice. I'll check out all the links.

Now I'm rambling but I guess my thoughts in regards to these meds is that it makes more sense to take inhaled meds (Cayston, Mucomyst) and maybe Zithromax than to start backsliding, get sick, and have to be on IV's. I feel a lot more comfortable with the inhaled meds than I do IVs. Although my CF doc has tried to reassure me that there are safe IV choices if we ever HAVE to go that route. Fingers crossed that it doesn't come to that.

Well I better run, thanks again!

Autumn
 
T

triples15

Super Moderator
Thanks so much everybody! Marisa, I knew I was right behind you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out I was pregnant a couple days after you posted your positive pregnancy test news!

Thanks for the resources. I may call the Infant Risk Center. I'm also thinking of making a trip to Barnes & Noble and buying Dr. Hale's book today. Does it have a lot of information about pregnancy too? I'm wondering if it is only about breastfeeding since the title is Medications and Mothers Milk.

I'm kind of a bum and didn't get my doctor called today. I guess I'm kinda nervous about what the plan of action will be. I did just email them though so I will have a response tomorrow. I like emailing better sometimes because I feel like I can articulate what exactly is going on more effectively than on the phone.

I guess the weirdest thing about this non-consensus on meds is that my OBs (both reg and high risk)do work directly with my CF doc. The high risk doctor is the one they send all of their CF patients to and he is considered the expert. They are all at the University Med Center I go to. My CF doctor flat out told me that when I went to see the OB he would tell me I could take the meds that the CF doc had taken me off. The OB told me that he knew the CF doc would take me off of them, but that he feel I can stay on all of them without changing anything. They basically just come right out and say they blatantly disagree. So I'm like, "great"! The high risk OB was going to send a report to my CF team I guess basically saying that he feels I can continue on the meds. I haven't talked to my CF team since that time. So maybe when I hear from them tomorrow there will be some sort of consensus, but I doubt it.

Thanks so much again for the support and advice. I'll check out all the links.

Now I'm rambling but I guess my thoughts in regards to these meds is that it makes more sense to take inhaled meds (Cayston, Mucomyst) and maybe Zithromax than to start backsliding, get sick, and have to be on IV's. I feel a lot more comfortable with the inhaled meds than I do IVs. Although my CF doc has tried to reassure me that there are safe IV choices if we ever HAVE to go that route. Fingers crossed that it doesn't come to that.

Well I better run, thanks again!

Autumn
 
T

triples15

Super Moderator
Thanks so much everybody! Marisa, I knew I was right behind you! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I found out I was pregnant a couple days after you posted your positive pregnancy test news!
<br />
<br />Thanks for the resources. I may call the Infant Risk Center. I'm also thinking of making a trip to Barnes & Noble and buying Dr. Hale's book today. Does it have a lot of information about pregnancy too? I'm wondering if it is only about breastfeeding since the title is Medications and Mothers Milk.
<br />
<br />I'm kind of a bum and didn't get my doctor called today. I guess I'm kinda nervous about what the plan of action will be. I did just email them though so I will have a response tomorrow. I like emailing better sometimes because I feel like I can articulate what exactly is going on more effectively than on the phone.
<br />
<br />I guess the weirdest thing about this non-consensus on meds is that my OBs (both reg and high risk)do work directly with my CF doc. The high risk doctor is the one they send all of their CF patients to and he is considered the expert. They are all at the University Med Center I go to. My CF doctor flat out told me that when I went to see the OB he would tell me I could take the meds that the CF doc had taken me off. The OB told me that he knew the CF doc would take me off of them, but that he feel I can stay on all of them without changing anything. They basically just come right out and say they blatantly disagree. So I'm like, "great"! The high risk OB was going to send a report to my CF team I guess basically saying that he feels I can continue on the meds. I haven't talked to my CF team since that time. So maybe when I hear from them tomorrow there will be some sort of consensus, but I doubt it.
<br />
<br />Thanks so much again for the support and advice. I'll check out all the links.
<br />
<br />Now I'm rambling but I guess my thoughts in regards to these meds is that it makes more sense to take inhaled meds (Cayston, Mucomyst) and maybe Zithromax than to start backsliding, get sick, and have to be on IV's. I feel a lot more comfortable with the inhaled meds than I do IVs. Although my CF doc has tried to reassure me that there are safe IV choices if we ever HAVE to go that route. Fingers crossed that it doesn't come to that.
<br />
<br />Well I better run, thanks again!
<br />
<br />Autumn
 
S

serendipity730

New member
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.
 
S

serendipity730

New member
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.
 
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