cmcardle74

Pregnant While On Xyrem...reporting In

41 posts in this topic

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.

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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.

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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.accessdata.fda.gov/drugsatfda_docs/label/2012/021196s013lbl.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.

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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. 

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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.

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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!

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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. 

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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?

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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.

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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.

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

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I am pregnat!

A couple of weeks ago and had a slight seizure (I have simple parical seizures mostly in my face and right arm) so my kepra got upped by 250mg 2x daily I was taking 1000mg 2x daily with vimpat 50mg morning 100mg night and taking lorazipam 1 or 2mg when I felt a seizure was coming.

My current sleep doc wont give me xyrem pregnant so I am looking for a new one. I am taking xyrem in the mean time hoping to get a doctor that will refil it I am really scared about being off of it, my life was really bad before I started taking it (I was about to have to file for disability)

Without xyrem I sleep 16+ hours a day, only crave candy and simple carbs, have way more seizures, cannot work or go to school, loose whole days/years of memories, fall asleep driving... and the list goes on. I dont have catalepsy (at least I dont think I have heard that some doctors confuse seizures with C and that me haveing N and seizures I could have both) but in that I have more seizures off xyrem.

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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?

 That is what I was hoping to do, I hope you can find a doctor to give you the mediation!

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I am pregnat!

A couple of weeks ago and had a slight seizure (I have simple parical seizures mostly in my face and right arm) so my kepra got upped by 250mg 2x daily I was taking 1000mg 2x daily with vimpat 50mg morning 100mg night and taking lorazipam 1 or 2mg when I felt a seizure was coming.

My current sleep doc wont give me xyrem pregnant so I am looking for a new one. I am taking xyrem in the mean time hoping to get a doctor that will refil it I am really scared about being off of it, my life was really bad before I started taking it (I was about to have to file for disability)

Without xyrem I sleep 16+ hours a day, only crave candy and simple carbs, have way more seizures, cannot work or go to school, loose whole days/years of memories, fall asleep driving... and the list goes on. I dont have catalepsy (at least I dont think I have heard that some doctors confuse seizures with C and that me haveing N and seizures I could have both) but in that I have more seizures off xyrem.

Y_C, I'm so sorry your sleep doc won't work with you. The thing is, Xyrem, when studied at normal doses was a category B drug, seen as safe for pregnancy. They upped it to a C when they upped the dose to 1000mg/kg. No one in their right mind is going to take that much. I understand how profoundly xyrem can change your life. It brings you to a point where you can actually live instead of feeling like a zombie. Talk to your ob/gyn about it and if he/she feels comfortable with it, have them talk to your sleep doc. I'll pray that the doc listens!

Blessings!

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Hello All.  I'm 9 weeks pregnant (due mid November 2015) and still taking my meds.  I'd like to share what I know and how things are going so far. 

 

Background about me:

I have a PhD in Cognitive Neural Science...not that I normally lead with that (how pompous, right!?) but want to convey that I am fairly skilled at conducting a "real" (peer-reviewed) scientific review of the literature.  The verdict: not much out there when it comes to narcolepsy and pregnancy!  Also, from the looks of clinical trials, not much on the horizon, either.  Therefore, the most relevant information is from anecdotal stories from others...which is why/how I ended up reading this post.

 

Literature Search Results:

I did come across a legitimate survey report from 2013 (see citation #1 at bottom).  In this study, the authors sent out a questionnaire to "expert" sleep specialists around the world and compiled their responses.  They asked many questions about whether (and at what point during the pregnancy) did they recommend stopping medications (results listed individually for several medications, including Xyrem).  They also asked about whether complications were observed.  Paraphrased conclusion: perceived risks to mother and fetus are overestimated, and teratogenic effects (genetic defects to fetus) AT THERAPEUTIC DOSES is essentially nonexistent.  Nice!  I printed copies of this paper for both my OB/GYN and Sleep MD last year, when I wanted to discuss becoming pregnant.

 

My Plan:

While we don't know much about how Xyrem (and Nuvigil, etc.) impacts mom and baby, we DO know that stress is very, very bad and actually makes changes to the DNA of a baby (not kidding!) especially when the mother is under chronic stress.  I don't know about any of you, but I am stressed and a real mess after a week without Xyrem-! So I opted to go the less-known route that seemed more safe to me: keep my womb as stress-free as possible.  That said, there are plenty of things in life that are stressful (morning sickness, for one) but my main trigger is a lack of deep sleep, so I decided to remain on Xyrem and NuVigil.  My plan is to remain on all medications throughout pregnancy, and breastfeeding (pump-and-dump in the mornings, etc.).

 

I'll keep you posted on how it goes, but so far, so good!

 

Resources/Literature:

Main citation:
1-- Thorpy, Michael; Zhao, Chi George, Dauvilliers, Yves (2013).  Management of narcolepsy during pregnancy.  Sleep Medicine, 14, p 367-376.  www.Elsevier.com/locate/sleep.  Note: two of the authors have received honorary funding (travel reimbursement, etc., to attend conferences from some pharmaceutical companies...it is fully disclosed in the paper, but FYI).

 

Other papers that I found to be helpful/interesting:

2-- Thorpy, Michael; Zhao, Chi George (2013).  Sleep Disorders.  Neuroscience in the 21st Century, Chapter 93, p 2473-2498, Springer, New York.  ISBN: 978-1-4614-1997-6.

 

3-- Mignot, Emmanuel J M (2012).  A practical guide to therapy of narcolepsy and hypersomnia syndromes.  Neurotherapeutics, 9(4), p 739-752. DOI 10.1007/s13311-012-0150-9, Springer, New York.

 

4-- Geert, Mayer (2012).  The use of sodium oxybate to treat narcolepsy.  Expert Review of Neurotherapeutics, 12(5), p 519-529.  DOI 10.1586/ern.12.42, ISSN 5475-7175.

 

5-- Zaharna, Mia; Dimitriu, Alex; Guilleminault, Christian (2010).  Expert opinion on pharmacotherapy of narcolepsy.  Expert Opinion on Pharmacotherapy, 11(10), p 1633-1645.  DOI 10.1517/14656566.2010.484021.  Note: Obtained from the Informa Healthcare website, www.informahealthcare.com).

 

*** Tip: if you bring reading material to your doctor's office, there are some hurdles.  A.) you give it to the receptionist/nurse and it is never seen again.  B.) Your doctor (yes, even the nice ones) don't like to look clueless, so they briefly browse the abstract (summary) while mid-consultation (e.g., they don't really get to take in the information) and put it aside and act like they kind of know what its about, or C.) your doctor can't provide you with a consultation and read the paper at the same time. Therefore, I would strongly recommend that you hand-write your name at the top, hand it directly to your MD during the visit, as you state that this is a copy for them to keep and read when they get a chance, as it pertains to your treatment.  Leave it at that, then get back to the consult.  A day or so later, they will find it again on their desk, read/skim it, and as they put it back in your file, they may make a few notes about the content, which they will then see right there in your chart the next time they pre-skim it before your next consultation.  Its very difficult to get new info to doctors, and the system is not set up well for it (I love the nurses that take my BP/weight, but I think of them as trolls at the gate...as far as access to my MD goes).  But this seems to work without excessive nagging.

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Thank you so much for sharing! Looking forward to hearing more about how it goes.

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