doc says NO to inhaled tobi while pregnant...

S

semperfiohana

Guest
she's been in contact with my specialist. i'm allergic to pencillin, so the options are cut there too. my doctor wanted me to inhale the tobi, but it gives me headaches and she told me to just try it again and take tylenol, but i would be pretty much taking tylenol like it was candy to combat my headaches. it's stupid to tolerate it one way and not the other. i tried taking tylenol cold to get rid of my cold, but it just didn't work. so this is my last resort. i'm just tired of fighting the cold and getting no where. it's almost like just leave the picc in case i need it again and you're going to shoot me up with iv's after the baby anyways. i would never do that though, i like taking real showers too much lol. but i just need to feel better, like i did a week after i had the picc pulled. maybe no more work would help too.
 
S

semperfiohana

Guest
she's been in contact with my specialist. i'm allergic to pencillin, so the options are cut there too. my doctor wanted me to inhale the tobi, but it gives me headaches and she told me to just try it again and take tylenol, but i would be pretty much taking tylenol like it was candy to combat my headaches. it's stupid to tolerate it one way and not the other. i tried taking tylenol cold to get rid of my cold, but it just didn't work. so this is my last resort. i'm just tired of fighting the cold and getting no where. it's almost like just leave the picc in case i need it again and you're going to shoot me up with iv's after the baby anyways. i would never do that though, i like taking real showers too much lol. but i just need to feel better, like i did a week after i had the picc pulled. maybe no more work would help too.
 
S

semperfiohana

Guest
she's been in contact with my specialist. i'm allergic to pencillin, so the options are cut there too. my doctor wanted me to inhale the tobi, but it gives me headaches and she told me to just try it again and take tylenol, but i would be pretty much taking tylenol like it was candy to combat my headaches. it's stupid to tolerate it one way and not the other. i tried taking tylenol cold to get rid of my cold, but it just didn't work. so this is my last resort. i'm just tired of fighting the cold and getting no where. it's almost like just leave the picc in case i need it again and you're going to shoot me up with iv's after the baby anyways. i would never do that though, i like taking real showers too much lol. but i just need to feel better, like i did a week after i had the picc pulled. maybe no more work would help too.
 
S

semperfiohana

Guest
she's been in contact with my specialist. i'm allergic to pencillin, so the options are cut there too. my doctor wanted me to inhale the tobi, but it gives me headaches and she told me to just try it again and take tylenol, but i would be pretty much taking tylenol like it was candy to combat my headaches. it's stupid to tolerate it one way and not the other. i tried taking tylenol cold to get rid of my cold, but it just didn't work. so this is my last resort. i'm just tired of fighting the cold and getting no where. it's almost like just leave the picc in case i need it again and you're going to shoot me up with iv's after the baby anyways. i would never do that though, i like taking real showers too much lol. but i just need to feel better, like i did a week after i had the picc pulled. maybe no more work would help too.
 
S

semperfiohana

Guest
she's been in contact with my specialist. i'm allergic to pencillin, so the options are cut there too. my doctor wanted me to inhale the tobi, but it gives me headaches and she told me to just try it again and take tylenol, but i would be pretty much taking tylenol like it was candy to combat my headaches. it's stupid to tolerate it one way and not the other. i tried taking tylenol cold to get rid of my cold, but it just didn't work. so this is my last resort. i'm just tired of fighting the cold and getting no where. it's almost like just leave the picc in case i need it again and you're going to shoot me up with iv's after the baby anyways. i would never do that though, i like taking real showers too much lol. but i just need to feel better, like i did a week after i had the picc pulled. maybe no more work would help too.
 
T

tinamarie4685

New member
Thanks for those links... I was so surprised because when I was on the phone with my ob/gyn and told her I had started up the inhaled TOBI, she even said "usually the meds that end in 'mycin' are safe to inhale while pregnant, but let me look it up in the hospitals program just to be sure" and then she proceeded to read me the effects of inhaling TOBI.. and I said, "are you sure this is for inhaling it?" cause obviously going on tobra I.V. would be A LOT riskier.. and she said it was for the inhaled, 1 vial twice a day.. so I mean, I am going to listen to her because she is the high risk ob/gyn... but I really thought inhaling it would be okay and I could avoid IV's <img src="i/expressions/face-icon-small-sad.gif" border="0">

Candice - it's so ironic how your doctor actually recommended tobi and mine is so against it - just goes to show you how much doctors "really" know I guess .. when it comes down to it, it's always going to be risk vs. benefit and no one totally knows 100% for sure I suppose! I wish my doctor was saying I could inhale it (well my CF doctor is, but my high risk obgyn is the one saying no) because I am sensative to it, despite already having vestibular damage.. i was willing to do it anyways to keep myself healthy for the baby. Oh and I wanted to show you this link.... it's for a shower PICC cover - quite a few of my CF friends and myself have gotten one - SO WORTH IT.. you can take the longest, regular, real showers even while a PICC is in your arm <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best invention ever.. I HIGHLY recommend buying one!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allegromedical.com/infusion-iv-supplies-c6448/dry-pro-picc-or-iv-line-protector-p554952.html
">http://www.allegromedical.com/...rotector-p554952.html
</a>
Sorry, I dont know how to add a link to a post so just copy & paste that.

I'm going to do some more investigating once I find out which IV meds they are putting me on - my doctor said he was going to call me back tonight and tell me the meds/dosages but he never did...
 
T

tinamarie4685

New member
Thanks for those links... I was so surprised because when I was on the phone with my ob/gyn and told her I had started up the inhaled TOBI, she even said "usually the meds that end in 'mycin' are safe to inhale while pregnant, but let me look it up in the hospitals program just to be sure" and then she proceeded to read me the effects of inhaling TOBI.. and I said, "are you sure this is for inhaling it?" cause obviously going on tobra I.V. would be A LOT riskier.. and she said it was for the inhaled, 1 vial twice a day.. so I mean, I am going to listen to her because she is the high risk ob/gyn... but I really thought inhaling it would be okay and I could avoid IV's <img src="i/expressions/face-icon-small-sad.gif" border="0">

Candice - it's so ironic how your doctor actually recommended tobi and mine is so against it - just goes to show you how much doctors "really" know I guess .. when it comes down to it, it's always going to be risk vs. benefit and no one totally knows 100% for sure I suppose! I wish my doctor was saying I could inhale it (well my CF doctor is, but my high risk obgyn is the one saying no) because I am sensative to it, despite already having vestibular damage.. i was willing to do it anyways to keep myself healthy for the baby. Oh and I wanted to show you this link.... it's for a shower PICC cover - quite a few of my CF friends and myself have gotten one - SO WORTH IT.. you can take the longest, regular, real showers even while a PICC is in your arm <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best invention ever.. I HIGHLY recommend buying one!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allegromedical.com/infusion-iv-supplies-c6448/dry-pro-picc-or-iv-line-protector-p554952.html
">http://www.allegromedical.com/...rotector-p554952.html
</a>
Sorry, I dont know how to add a link to a post so just copy & paste that.

I'm going to do some more investigating once I find out which IV meds they are putting me on - my doctor said he was going to call me back tonight and tell me the meds/dosages but he never did...
 
T

tinamarie4685

New member
Thanks for those links... I was so surprised because when I was on the phone with my ob/gyn and told her I had started up the inhaled TOBI, she even said "usually the meds that end in 'mycin' are safe to inhale while pregnant, but let me look it up in the hospitals program just to be sure" and then she proceeded to read me the effects of inhaling TOBI.. and I said, "are you sure this is for inhaling it?" cause obviously going on tobra I.V. would be A LOT riskier.. and she said it was for the inhaled, 1 vial twice a day.. so I mean, I am going to listen to her because she is the high risk ob/gyn... but I really thought inhaling it would be okay and I could avoid IV's <img src="i/expressions/face-icon-small-sad.gif" border="0">

Candice - it's so ironic how your doctor actually recommended tobi and mine is so against it - just goes to show you how much doctors "really" know I guess .. when it comes down to it, it's always going to be risk vs. benefit and no one totally knows 100% for sure I suppose! I wish my doctor was saying I could inhale it (well my CF doctor is, but my high risk obgyn is the one saying no) because I am sensative to it, despite already having vestibular damage.. i was willing to do it anyways to keep myself healthy for the baby. Oh and I wanted to show you this link.... it's for a shower PICC cover - quite a few of my CF friends and myself have gotten one - SO WORTH IT.. you can take the longest, regular, real showers even while a PICC is in your arm <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best invention ever.. I HIGHLY recommend buying one!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allegromedical.com/infusion-iv-supplies-c6448/dry-pro-picc-or-iv-line-protector-p554952.html
">http://www.allegromedical.com/...rotector-p554952.html
</a>
Sorry, I dont know how to add a link to a post so just copy & paste that.

I'm going to do some more investigating once I find out which IV meds they are putting me on - my doctor said he was going to call me back tonight and tell me the meds/dosages but he never did...
 
T

tinamarie4685

New member
Thanks for those links... I was so surprised because when I was on the phone with my ob/gyn and told her I had started up the inhaled TOBI, she even said "usually the meds that end in 'mycin' are safe to inhale while pregnant, but let me look it up in the hospitals program just to be sure" and then she proceeded to read me the effects of inhaling TOBI.. and I said, "are you sure this is for inhaling it?" cause obviously going on tobra I.V. would be A LOT riskier.. and she said it was for the inhaled, 1 vial twice a day.. so I mean, I am going to listen to her because she is the high risk ob/gyn... but I really thought inhaling it would be okay and I could avoid IV's <img src="i/expressions/face-icon-small-sad.gif" border="0">

Candice - it's so ironic how your doctor actually recommended tobi and mine is so against it - just goes to show you how much doctors "really" know I guess .. when it comes down to it, it's always going to be risk vs. benefit and no one totally knows 100% for sure I suppose! I wish my doctor was saying I could inhale it (well my CF doctor is, but my high risk obgyn is the one saying no) because I am sensative to it, despite already having vestibular damage.. i was willing to do it anyways to keep myself healthy for the baby. Oh and I wanted to show you this link.... it's for a shower PICC cover - quite a few of my CF friends and myself have gotten one - SO WORTH IT.. you can take the longest, regular, real showers even while a PICC is in your arm <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best invention ever.. I HIGHLY recommend buying one!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allegromedical.com/infusion-iv-supplies-c6448/dry-pro-picc-or-iv-line-protector-p554952.html
">http://www.allegromedical.com/...rotector-p554952.html
</a>
Sorry, I dont know how to add a link to a post so just copy & paste that.

I'm going to do some more investigating once I find out which IV meds they are putting me on - my doctor said he was going to call me back tonight and tell me the meds/dosages but he never did...
 
T

tinamarie4685

New member
Thanks for those links... I was so surprised because when I was on the phone with my ob/gyn and told her I had started up the inhaled TOBI, she even said "usually the meds that end in 'mycin' are safe to inhale while pregnant, but let me look it up in the hospitals program just to be sure" and then she proceeded to read me the effects of inhaling TOBI.. and I said, "are you sure this is for inhaling it?" cause obviously going on tobra I.V. would be A LOT riskier.. and she said it was for the inhaled, 1 vial twice a day.. so I mean, I am going to listen to her because she is the high risk ob/gyn... but I really thought inhaling it would be okay and I could avoid IV's <img src="i/expressions/face-icon-small-sad.gif" border="0">

Candice - it's so ironic how your doctor actually recommended tobi and mine is so against it - just goes to show you how much doctors "really" know I guess .. when it comes down to it, it's always going to be risk vs. benefit and no one totally knows 100% for sure I suppose! I wish my doctor was saying I could inhale it (well my CF doctor is, but my high risk obgyn is the one saying no) because I am sensative to it, despite already having vestibular damage.. i was willing to do it anyways to keep myself healthy for the baby. Oh and I wanted to show you this link.... it's for a shower PICC cover - quite a few of my CF friends and myself have gotten one - SO WORTH IT.. you can take the longest, regular, real showers even while a PICC is in your arm <img src="i/expressions/face-icon-small-smile.gif" border="0">
Best invention ever.. I HIGHLY recommend buying one!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allegromedical.com/infusion-iv-supplies-c6448/dry-pro-picc-or-iv-line-protector-p554952.html
">http://www.allegromedical.com/...rotector-p554952.html
</a>
Sorry, I dont know how to add a link to a post so just copy & paste that.

I'm going to do some more investigating once I find out which IV meds they are putting me on - my doctor said he was going to call me back tonight and tell me the meds/dosages but he never did...
 
R

rubyroselee

New member
Hi Tina,

None of my doctors (CF doctor, fertility doctor, or OB/GYN) has recommended that I come off my Tobi during pregnancy. I actually take Tobi more than the recommended amount - I do 3 weeks on/1 week off. I get quite yucky when I'm not on it and nothing else works for me as I am allergic to most oral antibiotics and Colistin does nothing. I know that I would get quite sick (and probably require IVs) if I wasn't on Tobi, so to me, it is much better for me to be on Tobi than not. I think it depends on everyone's individual situation. A lot of medication books that show pregnancy risk only show tobramycin in the IV form and not the inhaled form. There really has not been much research at all on the inhaled form and pregnancy. They just see "tobramycin" as a category D and freak out. The blood levels are so very little when inhaled that I really don't see it as a risk to the baby...just IMHO.
 
R

rubyroselee

New member
Hi Tina,

None of my doctors (CF doctor, fertility doctor, or OB/GYN) has recommended that I come off my Tobi during pregnancy. I actually take Tobi more than the recommended amount - I do 3 weeks on/1 week off. I get quite yucky when I'm not on it and nothing else works for me as I am allergic to most oral antibiotics and Colistin does nothing. I know that I would get quite sick (and probably require IVs) if I wasn't on Tobi, so to me, it is much better for me to be on Tobi than not. I think it depends on everyone's individual situation. A lot of medication books that show pregnancy risk only show tobramycin in the IV form and not the inhaled form. There really has not been much research at all on the inhaled form and pregnancy. They just see "tobramycin" as a category D and freak out. The blood levels are so very little when inhaled that I really don't see it as a risk to the baby...just IMHO.
 
R

rubyroselee

New member
Hi Tina,

None of my doctors (CF doctor, fertility doctor, or OB/GYN) has recommended that I come off my Tobi during pregnancy. I actually take Tobi more than the recommended amount - I do 3 weeks on/1 week off. I get quite yucky when I'm not on it and nothing else works for me as I am allergic to most oral antibiotics and Colistin does nothing. I know that I would get quite sick (and probably require IVs) if I wasn't on Tobi, so to me, it is much better for me to be on Tobi than not. I think it depends on everyone's individual situation. A lot of medication books that show pregnancy risk only show tobramycin in the IV form and not the inhaled form. There really has not been much research at all on the inhaled form and pregnancy. They just see "tobramycin" as a category D and freak out. The blood levels are so very little when inhaled that I really don't see it as a risk to the baby...just IMHO.
 
R

rubyroselee

New member
Hi Tina,

None of my doctors (CF doctor, fertility doctor, or OB/GYN) has recommended that I come off my Tobi during pregnancy. I actually take Tobi more than the recommended amount - I do 3 weeks on/1 week off. I get quite yucky when I'm not on it and nothing else works for me as I am allergic to most oral antibiotics and Colistin does nothing. I know that I would get quite sick (and probably require IVs) if I wasn't on Tobi, so to me, it is much better for me to be on Tobi than not. I think it depends on everyone's individual situation. A lot of medication books that show pregnancy risk only show tobramycin in the IV form and not the inhaled form. There really has not been much research at all on the inhaled form and pregnancy. They just see "tobramycin" as a category D and freak out. The blood levels are so very little when inhaled that I really don't see it as a risk to the baby...just IMHO.
 
R

rubyroselee

New member
Hi Tina,

None of my doctors (CF doctor, fertility doctor, or OB/GYN) has recommended that I come off my Tobi during pregnancy. I actually take Tobi more than the recommended amount - I do 3 weeks on/1 week off. I get quite yucky when I'm not on it and nothing else works for me as I am allergic to most oral antibiotics and Colistin does nothing. I know that I would get quite sick (and probably require IVs) if I wasn't on Tobi, so to me, it is much better for me to be on Tobi than not. I think it depends on everyone's individual situation. A lot of medication books that show pregnancy risk only show tobramycin in the IV form and not the inhaled form. There really has not been much research at all on the inhaled form and pregnancy. They just see "tobramycin" as a category D and freak out. The blood levels are so very little when inhaled that I really don't see it as a risk to the baby...just IMHO.
 
E

elizab

New member
Hi Tina,

I am 15 weeks now - my CF team (and my high risk OB) agreed that there is not a problem with nebulised Tobi twice a day during pregnancy also nebulised Colomycin which I alternate monthly.
Re IVs I was told that IV Fortum (Ceftazadime) is considered very safe and I have already taken it - unfortunately needed IVs a few weeks ago. I have also been told that my team (in Ireland) are now treating pregnant CF women with IV Tobramycin as it is considered benefits outweigh risks and if I get another significant infection I will consider it.

Obviously there are significant differences of opinion out there but I would be more inclined to consider strongly advice of your CF team who know these medications well - some high risk OBs may not be familiar with treating CF women - though fortunately mine has. Is it worth getting your CF team to speak to your OB about meds?

Re risk v benefit - the biggest risk to any pregnancy in my opinion is that the mother becomes significantly unwell so with CF we may have to take slightly more risks re medication than your average women to ensure we stay well enough to allow the baby to reach as close to full-term as possible.

It's not easy is it!! Best of luck whatever you decide,

Elizab

<img src="http://tickers.TickerFactory.com/ezt/d/1;20711;13/st/20080804/dt/5/k/31c2/preg.png">
 
E

elizab

New member
Hi Tina,

I am 15 weeks now - my CF team (and my high risk OB) agreed that there is not a problem with nebulised Tobi twice a day during pregnancy also nebulised Colomycin which I alternate monthly.
Re IVs I was told that IV Fortum (Ceftazadime) is considered very safe and I have already taken it - unfortunately needed IVs a few weeks ago. I have also been told that my team (in Ireland) are now treating pregnant CF women with IV Tobramycin as it is considered benefits outweigh risks and if I get another significant infection I will consider it.

Obviously there are significant differences of opinion out there but I would be more inclined to consider strongly advice of your CF team who know these medications well - some high risk OBs may not be familiar with treating CF women - though fortunately mine has. Is it worth getting your CF team to speak to your OB about meds?

Re risk v benefit - the biggest risk to any pregnancy in my opinion is that the mother becomes significantly unwell so with CF we may have to take slightly more risks re medication than your average women to ensure we stay well enough to allow the baby to reach as close to full-term as possible.

It's not easy is it!! Best of luck whatever you decide,

Elizab

<img src="http://tickers.TickerFactory.com/ezt/d/1;20711;13/st/20080804/dt/5/k/31c2/preg.png">
 
E

elizab

New member
Hi Tina,

I am 15 weeks now - my CF team (and my high risk OB) agreed that there is not a problem with nebulised Tobi twice a day during pregnancy also nebulised Colomycin which I alternate monthly.
Re IVs I was told that IV Fortum (Ceftazadime) is considered very safe and I have already taken it - unfortunately needed IVs a few weeks ago. I have also been told that my team (in Ireland) are now treating pregnant CF women with IV Tobramycin as it is considered benefits outweigh risks and if I get another significant infection I will consider it.

Obviously there are significant differences of opinion out there but I would be more inclined to consider strongly advice of your CF team who know these medications well - some high risk OBs may not be familiar with treating CF women - though fortunately mine has. Is it worth getting your CF team to speak to your OB about meds?

Re risk v benefit - the biggest risk to any pregnancy in my opinion is that the mother becomes significantly unwell so with CF we may have to take slightly more risks re medication than your average women to ensure we stay well enough to allow the baby to reach as close to full-term as possible.

It's not easy is it!! Best of luck whatever you decide,

Elizab

<img src="http://tickers.TickerFactory.com/ezt/d/1;20711;13/st/20080804/dt/5/k/31c2/preg.png">
 
E

elizab

New member
Hi Tina,

I am 15 weeks now - my CF team (and my high risk OB) agreed that there is not a problem with nebulised Tobi twice a day during pregnancy also nebulised Colomycin which I alternate monthly.
Re IVs I was told that IV Fortum (Ceftazadime) is considered very safe and I have already taken it - unfortunately needed IVs a few weeks ago. I have also been told that my team (in Ireland) are now treating pregnant CF women with IV Tobramycin as it is considered benefits outweigh risks and if I get another significant infection I will consider it.

Obviously there are significant differences of opinion out there but I would be more inclined to consider strongly advice of your CF team who know these medications well - some high risk OBs may not be familiar with treating CF women - though fortunately mine has. Is it worth getting your CF team to speak to your OB about meds?

Re risk v benefit - the biggest risk to any pregnancy in my opinion is that the mother becomes significantly unwell so with CF we may have to take slightly more risks re medication than your average women to ensure we stay well enough to allow the baby to reach as close to full-term as possible.

It's not easy is it!! Best of luck whatever you decide,

Elizab

<img src="http://tickers.TickerFactory.com/ezt/d/1;20711;13/st/20080804/dt/5/k/31c2/preg.png">
 
E

elizab

New member
Hi Tina,

I am 15 weeks now - my CF team (and my high risk OB) agreed that there is not a problem with nebulised Tobi twice a day during pregnancy also nebulised Colomycin which I alternate monthly.
Re IVs I was told that IV Fortum (Ceftazadime) is considered very safe and I have already taken it - unfortunately needed IVs a few weeks ago. I have also been told that my team (in Ireland) are now treating pregnant CF women with IV Tobramycin as it is considered benefits outweigh risks and if I get another significant infection I will consider it.

Obviously there are significant differences of opinion out there but I would be more inclined to consider strongly advice of your CF team who know these medications well - some high risk OBs may not be familiar with treating CF women - though fortunately mine has. Is it worth getting your CF team to speak to your OB about meds?

Re risk v benefit - the biggest risk to any pregnancy in my opinion is that the mother becomes significantly unwell so with CF we may have to take slightly more risks re medication than your average women to ensure we stay well enough to allow the baby to reach as close to full-term as possible.

It's not easy is it!! Best of luck whatever you decide,

Elizab

<img src="http://tickers.TickerFactory.com/ezt/d/1;20711;13/st/20080804/dt/5/k/31c2/preg.png">
 
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