Pregnant and Miserable - Back to Methadone??

RLS/WED occurs more frequently in certain populations, including people with end-stage renal disease, women during pregnancy, and people with iron deficiency. Also, RLS/WED in the elderly and children brings other challenges. Sharing your experiences may be extraordinarily helpful to others.
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fraujoolie
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Postby fraujoolie » Sat Apr 02, 2011 5:56 pm

The Oxycodone might just be a transition drug to the Methadone. Sometimes RLS will get worse when you taper off of one med and onto another.

I had an external version (ECV) yesterday - the baby turned breech last week! Two doctors oiled up my giant belly and pushed/pulled this boy back into place. It was a success (and actually not as painful as everyone warned, just pressure and some contractions). L&D docs and nurses yesterday were fine with the Methadone. Must've gotten a more knowledgeable crowd this time. I did school them on "Ekbom Disease," and one of them was going to make it a point to harass the younger residents during rounds about it. She hadn't heard of it, and was pretty sure it would stump them, too. :)

I'm a little sore today, taking it easy. Wearing a corset to hold him in place, and will be induced on Tuesday! Currently taking 7.5 - 10mg/day. Stay tuned...
Julie

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Postby Betty/WV » Sat Apr 02, 2011 7:01 pm

wishing you and baby boy all the best. We will all be pulling for you.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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Neco
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Postby Neco » Sat Apr 02, 2011 8:02 pm

Oxycodone just by itself (not with acetaminophen or other OTC med combinations) should be pretty safe for Pregnancy as well. So it can be a good solution for you as well, or also be a transition to Methadone.

Most opiates are safe for pregnancy, as long as you are taking pure forms with no other substances (usually other over the counter pain killers). If the Oxycodone works good for you (I hope it does) then I encourage you to stick with it.

Julie, how has your Methadone been working for you during the past 9 months? Did you have to increase the dose one or more times? Is it adequate right now?

And what are you and your doctors plans after you deliver? Do you want to stay on it, or try to go back to a weaker opiate, or non-narcotic?


Those of you who have been on Opiates, or Methadone in particular during pregnancy; Have your doctors kept up with detailed notes on your condition? Have you kept detailed notes? Has your Doctor been in regular contact with you, about how you, your RLS/Ekboms Disease, and/or the Baby are doing, with regards to your dosage?

I would encourage any women who have been on Methadone or other Opiates during the full-term, or nearly full-term of their pregnancy, to consult with their Doctors about any detailed notes and observations they have been making, and ask them if they would consider writing a short paper on how your treatment went, and see about getting it published somewhere.

It could really help others if Doctors had more papers/studies like this to consult with as sources for treating RLS/EKD, especially in special cases like difficult patients, or pregnant patients with few options.

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fraujoolie
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Postby fraujoolie » Sat Apr 02, 2011 9:12 pm

Hi Zach,

Good comments and questions here. Thanks!

From what my doctors have told me, Oxycodone isn't a preferred medication over Methadone, because long-term use of Oxycodone during pregnancy tends to cause more symptoms of NAS, than Methadone does. Methadone also tends to be more effective in lower doses, as well, in regards to RLS. I was also on Methadone before I was pregnant, so there was the notion that we shouldn't rock the boat too much.

I have increased my dosage once during my pregnancy, during third trimester. I tried to taper off completely during second trimester, but that was a bad decision for me. I went from 5 - 7.5 mg daily during 1st and 2nd trimesters, to 7.5 - 10mg daily during third trimester (mostly during the last seven weeks here, I have seen a big spike in my symptoms). My lowest dose was around 1.5 mg, during 2nd trimester. I did a slow 0.5mg/week taper starting week 14. It sucked, and I was miserable. I went back up. I didn't have withdrawal symptoms, just RLS. It's important, though, if any woman is thinking about tapering, only do it with consulting with the Perinatologist. It's *very* dangerous to do this during pregnancy, and should only be attempted slowly and only during second trimester. Women on high doses shouldn't consider tapering at all.

I actually have approached my OB, Peri, and Dr. B about publishing. My OB and Peri were interested, and said they would talk after I delivered. Dr. B wasn't interested in writing about this, he says that every pregnancy has been so different, that he's not sure how useful such a paper would be. He held up the studies I pulled for him, and said, "That information is already here." He hasn't been very focused on my pregnancy, and has said up-front and all along -- he is here to treat me, not the baby. He would always defer to my OB/Peri for their final decision/agreement in treatment plan.

My OB and Peri monitored me more closely with this pregnancy (on Methadone) than my last pregnancy (without Methadone). Until 24 weeks, I had several Level II ultrasounds with the specialist, to monitor growth and development. So I would say that my appointments were about double than the "normal" pregnancy. After 24 weeks, everything was looking good, and my appointment schedule was similar to any other low-risk patient. My OB asks me every time about my symptoms. She has been quite connected, I think because she, too, has RLS. She's also just a good doctor, and does what she should! I wonder if her name should be included with Dr. B's Southern California RLS website, if anyone is looking for an OB that is familiar with RLS.

I saw Dr. B about 4 times during this pregnancy, so more often than when I'm not pregnant, and I also talked him on the phone/email a few times. I usually only see him 2-3x per year. I haven't read anyone's notes, but I can say that Dr. B read every article I sent to him, because we talked about them. My OB was very interested in the copies of the articles I gave to her, but the Peri said he already knew about all of these things (as he used to specialize purely in women on MMT), and didn't take them. The Peri was actually the one that suggested I go on Suboxone instead, but Dr. B wasn't able to do that. He wasn't satisfied that it was effective for RLS, he isn't allowed to prescribe that medication, and he also didn't want to rock the boat, if Methadone was already working. The Peri was fine with it. I haven't seen him since 24 weeks, though, but I know that him and my OB have talked since then.

As I was on Methadone (10 - 15mg/daily) before pregnancy, I anticipate I will continue with Methadone after delivery. I had augmentation with Mirapex, and other drugs (Lyrica, Gabapentin, Tramadol) weren't effective. My Methadone dose will probably go up after delivery, as I tapered enough during pregnancy to just be barely comfortable. I'd rather knock out the RLS better than I feel right now. I am hoping not to get into a battle about breastfeeding with the pediatrician, but I have the supportive articles packed in my hospital bag, so, we'll just have to go from there.
Julie

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Postby Polar Bear » Sun Apr 03, 2011 2:45 pm

Julie your posts have been very informative and thorough and can only be of great benefit for any RLS sufferer who is considering pregnancy.

Best wishes for you and your wee one on Tuesday.
Betty
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badnights
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Postby badnights » Sun Apr 03, 2011 11:06 pm

ditto, Julie, you're an inspiration. I hope Tuesday goes smoothly and the following weeks as well.

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Helen518
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Postby Helen518 » Mon Apr 04, 2011 1:28 pm

Good luck Tomorrow, Julie!

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fraujoolie
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Postby fraujoolie » Fri Apr 08, 2011 5:17 am

Announcing Baby Jaxon! Born 4/6/11 at 9:22 pm, 6 lbs 2 oz, 19" long. Most importantly, he is doing FINE. He is a lot smaller than my first was. I don't know if this can be attributed to the Methadone, or not. He has been checked every 4 hrs (BP, heart, general behavior, Q's about feeding and diapers), which is protocol in this situation, but has not been away from me at all. There has not been a need for him to go to observational nursery, NICU, etc. I was told by the nurses that any drug tests and calls to social worker only comes from doctor rec'd. Pediatricians, OB, nurses, everyone is pleased. I am still taking 7.5-10mg and breastfeeding. We're scheduled to be discharged tomorrow. We've been treated very well here. I couldn't have asked for a better outcome.
Julie

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Postby Betty/WV » Fri Apr 08, 2011 6:17 am

fraujoolie and Baby Jaxon: I am so happy for you. And glad that everything went well. I love the name you chose. I wish you both a happy life full of love.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

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Postby Polar Bear » Fri Apr 08, 2011 6:37 am

Wonderful. Wecome baby Jaxon. I've never heard that name before.

Well done mum and baby.
Betty
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ViewsAskew
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Postby ViewsAskew » Fri Apr 08, 2011 9:40 am

What great news!
Ann - Take what you need, leave the rest

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Helen518
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Postby Helen518 » Fri Apr 08, 2011 6:25 pm

Congratulations!! So glad to hear this!! I feel reassured and optimistic about my and my babies futures . .. !

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Postby SquirmingSusan » Fri Apr 08, 2011 10:51 pm

Excellent! So glad to hear that baby Jaxon (and you) is doing fine, and there are no problems from the methadone, or from the people who are concerned about the methadone. Congratulations!
Susan, squirming Image

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badnights
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Postby badnights » Sat Apr 09, 2011 3:10 am

Welcome Jaxon and congratulations Julie!

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Postby sarahjj » Sat Apr 09, 2011 5:11 pm

Such Excellent news, Julie! Congratulations! Welcome, baby Jaxon!! Julie, you made excellent, well informed decisions throughout your pregnancy and it all paid off. I am inspired now for my own pregnancy. THANK YOU for sharing so much of your personal story with us! Take care of yourself and baby Jaxon.

Sarah
~Sarah~


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