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Pregnant While On Xyrem...reporting In


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#21 Bunny0726

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Posted 28 January 2013 - 02:07 PM

I just posted this in the "getting pregnant with N" thread but since this one is more current, I'm posting here as well with the hope that I will get a few responses.  Apologies if you're seeing this twice and thanks in advance for sharing your experiences.

 

My partner and I are doing some preconception planning and are so thankful to have found this forum!  I currently take Nuvigil for narcolepsy, supplemented by Methylphenidate (though I haven't had to use this much lately).  I tried Xyrem for a few weeks but didn't tolerate the medication well so don't think that it will be an option for me during pregnancy, nor am I certain I would take it even if I tolerated it well.  I'm currently looking for a physician/midwifery practice in the Washington, DC area that can best support us through future pregnancies (we're planning to start trying for our first a little later this year), and I'd prefer care providers that don't take a highly medicalized approach to pregnancy and birth (probably asking for too much given that I manage narcolepsy and a few other chronic conditions that will affect this pregnancy! :).  If you or your loved ones have suggestions for doctors/midwives in this area, I would so appreciate the recommendation.  I realize it's probably against the rules to "name names" on this forum, so please message me individually, or let me know how else to connect with you.

 

I was doing some research and alarmed to find that there's a current practice guideline recommending planned c-section for women with narcolepsy with cataplexy.  My cataplexy isn't severe and so I'm unsure that I would experience some of the same difficulties that the women in the referenced case studies have (or others on this forum who have described their own experiences) - such as having drop attacks during contractions, pushing phase of labor, and/or during epidural insertion.  I'm curious as to what the experience has been with those on this forum re the advice of their care providers about this issue.

 

Also, I've read that some experience worse narcolepsy symptoms throughout pregnancy and find it difficult, if not impossible, to work.  I'm wondering whether anyone has experience to share regarding requesting an accommodation from their employer (either to work from home, to take naps during the work day) and/or going on disability for a time during/after pregnancy. 

 

This is a lot of questions for one post, though I do very much appreciate learning from your experiences...links to other sources/articles are also welcome.



#22 kyethra

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Posted 05 February 2013 - 04:32 PM

Pregnancy, and breastfeeding, was brutal.  I would really like to work more now that I am not breastfeeding anymore and have more energy.  Part time works well for me now, but I would definitely do full time for the right job.  I did need naps-- I think a shorter commute or driver would be necessary for work.  But I would like another child in maybe a couple of years-- we will see what happens then.



#23 frecklzzz

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Posted 10 September 2013 - 06:04 PM

Thanks to all of you for posting your experiences. I am currently on Xyrem and methylphenidate. My husband and I are starting to plan for pregnancy, but the thought of getting off of Xyrem is particularly frightening - I don't know how I would be able to continue to work without it. I know that some of you on this thread have talked about continuing to take Xyrem throughout pregnancy, but is there anyone who has made a decision about this more recently, since the drug is now categorized as pregnancy category C instead of B? 

 

I had previously talked to a perinatologist about staying on Xyrem and she said it was fine, but that was about two weeks before it was categorized as category C--though drugs.com and other various sites have failed to update their entries, the new information from the FDA says it is now pregnancy category C: http://www.accessdat...1196s013lbl.pdf

 

Are there any treatments for EDS any of you have found that one can use during pregnancy? 

 

Additionally, as my cataplexy is mild, I'm more concerned about EDS--are there any opinions on whether or not a C-sections is advised if cataplexy is minor?

 

Thanks in advance for your input!



#24 DeathRabbit

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Posted 10 September 2013 - 08:54 PM

TBH, I'm glad to see it was moved to a C. I'm not saying whether it's right or wrong to take during pregnancy. But the B status made it sound way too benign for such a powerful drug. I assume this is the result of the federal funding into narcolepsy research???



#25 ZombiePrincess

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Posted 11 September 2013 - 11:54 PM

Just an update. I'm currently 22 weeks pregnant and me and baby are both doing very well. I stopped taking my stimulants right after i found out i was pregnant (aprox 5 weeks) and weaned off my antidepressants (completely off of them by aprx 12 weeks) but have stayed on Xyrem (max dose) and continue to throughout. I am still undecided as to whether or not I will stay on Xyrem while breast feeding.

My OBGYN and sleep doctors both said as with any pregnancy, it is ideal to get off all meds but that they would support my decision to continue Xyrem as it is a category B drug (like Tylenol) and even though there haven't been studies in humans, all animal studies indicated no ill effects.

Just a few side notes, this is my second pregnancy. The first was before I was diagnosed w N or on any meds and I actually had more issues with that one. I developed preeclampsia and had to go on bed rest by aprox 6 months but I strongly believe that was due to gaining way too much weight (90 lbs total). I have gained a bit more than recommended this time around as well but no where close to last time. Currently no signs of preeclampsia or any other issues but ill try to post an update if anything comes up.

#26 ZombiePrincess

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Posted 12 September 2013 - 12:11 AM

Ok so I posted the previous comment before I realized there were new posts I hadn't read. Apparently Xyrem has now been changed to a category C drug so I will have to read up on that. My hubby is in his final year of medical school so ill probably ask him to look at everything as he understands so much more about verbiage and examples, etc.

#27 DeathRabbit

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Posted 12 September 2013 - 09:20 AM

Well, it means that it has shown some harm to offspring of lab animals, but there are no human studies to back it up. According to the pdf frecklzz posted, they didn't identify any birth defects or developmental issues, but there were higher rates of still birth and the babies born as less weight and were more likely to not make it. I would guess the reduced weight comes fro mthe fact that Xyrem will probably cause the mother to eat much less. The still birth risk most likely comes from the suppression of the newborns respiratory system. Just a guess.



#28 ZombiePrincess

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Posted 14 September 2013 - 10:30 PM

So my hubby and I finally sat down to look over everything. I also contacted my doctors and readdressed taking Xyrem while pregnant now that it has been changed to a category C drug. We have decided I will continue to take Xyrem through out my pregnancy.

This is how my hubby (4th year medical student) and my OBGYN and sleep doctors basically summarized the above article (http://www.accessdat...1196s013lbl.pdf). As a general disclaimer I just want to say that they still recommend you talk over all the options with your doctor before making any decisions.
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So basically the study demonstrated no adverse effects on organogenesis. That means that all the babies were formed properly. The study did mention that rats had some reports of still birth and babies that had trouble gaining weight after birth. The doses they used were 150, 350, and 1000 mg/kg. The stillbirth and weight gain issues were only reported at the highest dose. That would be like a 120lb woman taking 60grams every night instead of the normal max dose of 9grams. So they have to report it because of a theoretical risk.
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I personally feel fine with our decision to continue taking the Xyrem even though its been changed to a category C drug. I realize there are still other risks such as long term effects but I've had to make a decision based on less than ideal circumstances. Based on what we do know, I believe this is the best route for my family. I know I would never have been able to retain my job this long or live a very productive life without Xyrem; even now I have to take naps quite often and ultimatly reduce my hours to part time status so I'm just thankful to have the option of taking Xyrem.

#29 AnnieJoy

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Posted 14 September 2013 - 10:53 PM

I'm just curious. Everyone has talked a little bit about cataplexy during childbirth, but I haven't found many specifics. I'm just curious. I understand why someone with severe cataplexy would opt for a hospital birth, but straight to C-section? 
What about people with lesser effects of cataplexy? Home births? Do midwives even mess with a diagnosed PWN? 

Just curious. 



#30 ZombiePrincess

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Posted 15 September 2013 - 03:57 PM

I can't imagine why midwives would have a problem with cases of mild cataplexy. I have very mild cataplexy (none with Xyrem) and I plan on having a regular vaginal birth. My last one was vaginal too but that was before I was diagnosed w N. But, even this time my docs think it will be fine to at least try to deliver vaginally. I don't know that I would brave a home birth but mostly bc of other risks outside of N.

#31 b.chrissie@yahoo.com

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Posted 16 October 2013 - 01:23 PM

I've posted about this in a couple of different threads and I thought it would be more helpful to encapsulate it all in a new one; I know there are a few folks on these forums interested in this topic.

My wife has narcolepsy and cataplexy. She takes Provigil and Xyrem (max dose). After researching and talking to doctors we decided to try for a baby. She went off Provigil for a month before we started trying; she stayed on the Xyrem. She got pregnant right away after her month of waiting.

There have been no discernible ill effects from staying on the Xyrem. She has to nap a few extra times during the day without the Provigil, but she drinks coffee, tea, or soft drinks to take the edge off (our moms didn't give up caffeine and we turned out okay!). Every trip to the doctor has resulted in excellent tests; the pregnancy is textbook. Our son (!) is healthy as far as the doctor can tell, and all tests keep coming back normal. A couple of weeks ago he started moving discernibly and now regularly kicks and shifts as expected.

Of note for those with cataplexy: her cataplexy HAS gotten a bit worse. Her triggers bring it on a little bit more readily, but it isn't debilitating. For safety's sake she only drives locally and only after she's fresh from a nap; I drive the rest of the time.

We're in the sixth month now and are due around Thanksgiving. She'll be having a C-section because no one wants to mess around with natural childbirth and cataplexy. If all goes as planned I'll probably update this thread once he's born so that I can share the results!

CONGRATS! and thank you for sharing!



#32 dcullins

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Posted 10 November 2013 - 03:21 PM

AnnieJoy:  I asked my local midwife if she'd take me on if I were to get pregnant since I have narcolepsy and take Xyrem.  She said she would, and that I'd stick with the narcolepsy doctor to manange the medication during pregnancy.  I've done a lot of research on natural home birthing, and I've planned to do that when I do get pregnant.  I've heard of preeclampsia as a risk for a narcoleptic in labor, but that appears in 5-8% of births anyway. 



#33 catsmeow

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Posted 18 December 2013 - 02:03 PM

Zombieprincess, I'd love to hear an update. I recently got married and we started right away trying to conceive, as I am 44 years old. I take xyrem, but it wears off so quickly, I worked with my doctors and I split up the 9 grams into 3 doses, so that I get about 7.5 hours of sleep as opposed to 5 when I only took 2 doses. My cycle is now late, but I haven't had a positive test yet, I just want to have all of my ducks in a row if it does turn out positive and I go to talk to my OB. I've been reading everything I can, and my husband and I have been praying about what the right decision is, and I do think that the benefits of continuing on xyrem seem to outweigh the risks of stopping. 

 

I have seen a couple of posts of women having preeclampsia. Is that due to narcolepsy or xyrem? Does anyone know?



#34 ZombiePrincess

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Posted 20 December 2013 - 10:28 PM

Hi catsmeow! I've still got 3-4 more weeks until delivery. Official due date is 1/15 but I'm trying to talk my doc into inducing me a week early (1/8) just because. Baby is doing perfect and this has been a textbook pregnancy so far. I am still on Xyrem although I'm not sure if I'm going to stay in it after delivery. I'm supposed to get back together w my sleep doc to talk about being on it while breast feeding any time now so I'll let you all know about that ASAP.

#35 ZombiePrincess

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Posted 07 February 2014 - 03:03 PM

I just wanted to update all you other folks considering taking Xyrem while pregnant. Our beautiful son Archer was born on Jan 8th and he is as healthy as can be! My pregnancy and birth went perfectly; no complications of any kind despite my decision to continue taking Xyrem throughout. I did take a break from Xyrem for about a month in order to breastfeed as there is even less info on how it might pass through my breast milk but sadly Archer never took to nursing so I've made the switch back to formula. I will say I'm quite devastated that we couldn't make nursing work but at least it means I can start back on my meds. I still can't take Xyrem because I am having to get up to take care of Archer every 2-3 hours still but at least I can get back on my stimulants (Adderall) to help with the even more extreme fatigue during the day.

 

Even though there hasn't been any actual clinical studies or conclusive evidence indicating whether Xyrem is safe to take while pregnant I hope my experience can serve as a positive one. If I've left something out please feel free to message me.



#36 Hank

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Posted 07 February 2014 - 06:28 PM

Congratulations to you- how great of you to post. SO good to read good news.