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 » Mon Jan 03, 2011 5:26 pm

No tapering! It's very dangerous to taper dose during pregnancy, especially first trimester. Your body is already going through enough changes. I had a bad experience trying to taper 1st trimester, not knowing any better.

I do think there is at least an inquiry done on every baby that is born with some sort of drug in their system. Cord blood is tested, and babies are flagged. Broadly speaking, it's in the hospital's/state's interests to protect the health and safety of the infant. What happens after that varies from hospital to hospital, state to state. Perhaps even caseworker to caseworker.

My OB has told me to at least expect someone from social services to visit me in the hospital for an interview. I told her that I want her to advocate for me with the hospital/social services staff. She reassured me that no one is going to give me a hard time. "There are mothers you worry about, and then there are mothers you don't worry about." I am still a nervous wreck, however.

There is also another forum for mothers on methadone:
http://www.methadonesupport.org/Pregnancy.html
It is mostly geared towards women with addiction/higher dosages, but there is a nurse on the board, Jessica, who is very supportive. She will, however, tell you that there is *no* correlation between maternal dose and NAS (withdrawals), giving you anecdotal information. There's also some horror stories there of social services, and lengthy NICU stays (5 weeks?!). It's hard to say why these things happen, but like I said, it's a board for mostly drug-addicted women, so I am guessing there are other factors that are contributors (poly-drug use, poor prenatal care, instability, etc).

I didn't want to get into an argument with this Jessica, but do have a number of published medical studies, however, that do show a positive correlation between dose, fetal age at delivery, and even method of delivery. I think the lowest dose that can hold you is best.

And congratulations on your twins!
Julie

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Postby ViewsAskew » Mon Jan 03, 2011 8:05 pm

Helen, congrats on the twins! Hope that this pregnancy is not at difficult as the last one.
Ann - Take what you need, leave the rest

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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Back to Mirapex or Requip?

Postby fraujoolie » Fri Jan 07, 2011 5:29 pm

I'm going back to the OB today. Had an appointment with Dr. B this week, and it was discussed that perhaps I can go back on Mirapex. With the OB and Peri's blessing, of course. It is a Cat C drug, but after first trimester, I believe we're out of any danger. I should have an answer today.

It is advised pregnant women stay off Mirapex/Requip because of the risk of cleft palate. But I am 6 mo pregnant now, so out of the danger zone of development. Mirapex doesn't work great on me, but neither does this super-low dose of Methadone. If given a choice, I would take the Mirapex over Methadone at this point.
Julie

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Helen518
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Postby Helen518 » Fri Jan 07, 2011 6:28 pm

Good luck! I heard of another gal who took requip thru her whole pregnancy and the baby was fine. I can't take requip or mirapex for more than 3 days in a row or I get augmentation. ONce in a while when my involuntary movements got really bad I would take a mirapex but it started to make me puke again so I haven't taken it since June 2010 I think.

I hope that they can make you more comfortable while keeping baby safe!

News: I had my second ultrasound today and there are still two in there . .. and they now have heartbeats - EARLY! They both measure 6 weeks even though I am not 6 weeks along until monday. Doc was really pleased. DH of course has no comment.

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Postby badnights » Sat Jan 08, 2011 6:13 am

He'll get into it later, men need to see them because they can't feel them

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Postby fraujoolie » Mon Jan 10, 2011 12:47 am

OB isn't comfortable with me on Mirapex. Honestly, everything I've read shows the dangers only in first trimester. She says they "know" Methadone much better, so they want to stick with that. Even though I had augmentation on Mirapex, I thought it was a good option for my last trimester. The peri's only thought was, "Still not interested in Subutex?" Um...for the THIRD TIME, there is no one in this game that wants to prescribe Subutex for me, and Dr. B hasn't seen it used successfully for RLS, anyways.

Now I'm off to the cardiologist next week for my chest pains. It's taken me over a month to get the 'first available appointment.'

Helen, try puking in your husband's shoes. That way he can "feel" the magic of pregnancy.
:lol:
Julie

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Postby SquirmingSusan » Mon Jan 10, 2011 3:28 am

Chest pains, Julie? Tell me you've already seen some kind of doctor for that and it's not an emergency?
Susan

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Postby fraujoolie » Thu Jan 13, 2011 7:56 am

Saw the cardiologist today. I had some sort of sinus tachycardia with my first pregnancy, which thankfully resolved after delivery. Now I'm not having so much the racing pulse (it's not as bad as before), but I am having weird chest pains. Had an echo and EKG today, showing a murmur. He says it's normal for pregnant ladies to develop a murmur from the increased blood flow. Because I'm having the pains during exertion and rest, he doesn't think it's something very serious. Nevertheless, I am on a monitor (wireless!) for the next month, and he'll call me once my first 'transmissions' come through.

On a side note, which I'm sure Susan in the frigid North will appreciate, I saw a woman at the hospital today, wearing her fur coat and hat.... and it was 70 degrees here today. lol
Julie

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Postby SquirmingSusan » Mon Jan 17, 2011 4:33 am

Fur coat and hat and it's 70 degrees?! That's what I call a "weather wimp." Although I can't really talk. If it gets much above 70 degrees, I need the air conditioner on. 8) To me, 25 degrees is the perfect January temperature, and the cross country skiing and skijoring is great.
Susan

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Postby Neco » Mon Jan 17, 2011 5:46 pm

I hope this is nothing serious. But I feel obligated to mention this, in case no one has explained this to you.


There is a small risk of cardiac problems with Methadone, from what I understand it is some kind of rare side effect, that can cause sudden cardiac death; my new doctor made a big fuss about me taking an EKG because of it.

However if you had these issues with your first pregnancy, then I hope thats all this really is..

Something more important I noticed was you seem to be having trouble with your "ultra-low-dose" of Methadone.. Have you discussed raising the dose with anyone? If you are having problems and they seem comfortable enough having you on it (and I would agree... you don't not want to take something like Mirapex especially after augmenting on it already) then maybe you should ask them if you can increase the dose a little..

Is it an every day thing? Or is it just some days are worse than others, but then you're fine for a while?

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Postby fraujoolie » Tue Jan 18, 2011 3:04 am

No worries, cardiologist did an EKG and echocardiogram. I'm on a monitor (they're wireless now!), but he thinks it's just increased blood volume, which is causing a murmur. :)

The 5 mg of Methadone is barely holding me, in that it never gets rid of the symptoms completely, but I'm having about... eh, 40% relief. I still have some lingering symptoms when I wake up (7am), and they start up around 3pm. I don't know about going up, some nights that are horrible I've taken 7.5mg, but Dr. B has suggested I taper completely off at 33 weeks and just have a miserable 7 weeks until delivery, to reduce the amount of Methadone the baby is getting. Maybe if I go up on my Ambien (from 5 to 10mg), I can have enough relief to get through the nights.
Julie

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Postby fraujoolie » Sat Mar 26, 2011 7:03 pm

Well, I thought I'd post an update. If anything, maybe this will give future pregnant RLSers an idea of what can be done, what to expect, etc.

As I think I've said before, there's a lot of information out there on Methadone studies and pregnancy, but they are all on high-dose women, mostly recovering from heroin addiction. It doesn't really address people like "us," that have a completely different profile. There's also a forum online for "Methadone Mothers" at http://www.methadonesupport.org/Pregnancy.html
Again, this group really doesn't match up with my lifestyle, but they do have an excellent forum moderator.

So I am 37 weeks right now, and planning an induction at 39 weeks. There have been a few studies that have shown that babies born a little pre-term do better with withdrawal symptoms.

BTW, I am happy to share any of the articles I have, just message me and I'll send you the files.

I've gone up from 5 - 7.5 mg, to 7.5 - 10 mg, split dose in the evening. It is not really helping me at this point, but I was told to expect that during the last few weeks. I'm pretty miserable. Both Dr. B and my OB advised me to not even bother trying to taper at this point. Neither are terribly concerned about the dose. Dr. B has had a few patients on this dosage with "no problems," and the OB also thinks it's very low. The baby is measuring big and healthy, so there have not been any effects on birth weight from the Methadone.

The plan at the hospital is for the baby to go to an observational nursery. The hospital does have a Level 3 NICU, but both the OB and pediatrician don't think that will be necessary. Probably just observation and that's it.

I have been very upfront with my doctors and the hospital nurses about all this. My OB has been very supportive, as was the perinatologist I was seeing through 24 weeks (discharged, as the baby was looking great). I suggest that any woman going through this get an OB that is experienced with either Methadone or RLS. In my case, my OB shared with me that she has RLS, along with her mother and son. She knows first-hand the misery, which has made her very supportive and understanding of my medication.

The hospital staff has been more problematic, however. I've been in L&D twice now for pre-term labor. When I've shared with the nurses that I'm on Methadone (doesn't matter the dose), I'm treated like a drug addict. I've been questioned extensively (even through the contractions), and they have been somewhat suspicious of me. Lots of round-a-bout questions, trying to trip me up, or somehow admit to a drug problem. Most recently, I had a hard time even getting my dose on time. I had brought my Methadone with me, to show them my dosage and such, but it was still a long series of phone calls and several hours until I was allowed to take my meds. My first dose (5 mg) they eventually let me take from my supply, because it never showed up from the pharmacy, and it was already an hour late. My second dose showed up light (2 mg, instead of 2.5), in liquid form (??), and another hour late. Then they insisted on taping a pulse ox to me, to make sure I didn't "OD" overnight. Overkill. As my symptoms were still bad (as witnessed by the nurses and resident), the resident actually suggested I take a Benedryl to "calm it down." I gave her a little schooling on that.

I don't think they have much experience with any of this.

I've only talked with the assigned pediatrician on the phone, and she was also suspicious of me. I had some questions about their protocol and policies, and she wasn't really able to answer it. She was pretty short with me and insisted I send her blood test and ultrasound results to see my "drug use." I haven't heard from her since. This was the pediatrician that came rec'd by the OB, so I complained to the OB about it. She didn't know what to say, other than, "Well, addicts can be manipulative, so she was probably just being cautious." I think that if I was some sort of manipulative addict, I wouldn't be doing all this leg work. I feel like I am constantly going to the OB, begging her to "vouch" for me with everything. Because Dr. B is affiliated with a different hospital, he hasn't communicated with any of the staff about this, either. It's been exhausting.

In my hospital bag, I have copies of everything RLS- and Methadone-related. I'd suggest that to anyone in this situation. Also bring your meds, so they can see your dose, and that you're not lying about anything. Be ready to self-advocate and school them, even through your contractions, cervical check, or when they are digging in your arm for a vein. :roll:

Hope to return with some good news soon!!
Julie

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Postby ViewsAskew » Sat Mar 26, 2011 7:51 pm

Wow, Julie. It's just amazing what you've had to go through. How wonderful, though, that you've shared it for others. Thanks.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Helen518
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Postby Helen518 » Sun Mar 27, 2011 5:11 pm

Yes, I for one am reallly grateful you have shared your experience! It has helped me know what questions to ask and how to prepare!
I am at 17 weeks with twins now, on 15 mg methadone daily, same as before the pregnancy, and so far so good - only one bad RLS episode yesterday due to me forgetting a dose on Friday night.
Can't wait to hear how your delivery goes and how baby fares in teh first few hours, days, weeks, months . .. keep us updated!
Helen

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Postby sarahjj » Sat Apr 02, 2011 6:10 am

Wow, am I happy to read this 3 page post! I am at the very beginning stage of all of this. I am 8 weeks pregnant, trying to wean off Requip (as this whole thing was a total surprise) and trying to get some help on what to go on instead. It is now 2am and I have been up since 4am yesterday morning. So far, pretty sketchy. However I have high hopes for the next week to answer some of these questions.

Thank you for all the information regarding Methodone in pregnancy. You are very brave to be "paving a way" that the rest of us can benefit from. My current neuro, who I think has her act together regarding RLS, is working with me but very hesitant to put me on Methodone. So she wants to try Oxycodone first. I need to do some research on that to see what's up.

Thank you for posting all of your updates. PLEASE post an update after your baby is born and let us know how it all went. Again, thank you for documenting your experience. It is so helpful for me. I plan to take some of these articles you referenced with me when I go see my OB and Peri.

Blessings on a wonderful delivery and healthy baby!

Sarah
~Sarah~


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