Pregnant, just found out

RLS 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.
sarahjj
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Joined: Tue Jan 27, 2009 6:58 pm

Pregnant, just found out

Post by sarahjj »

I have severe RLS. Can't sleep a wink without 1.5mg of Requip at night. Have it horribly during the day, can never sit and relax. I just found out that I am pregnant. TODAY!! So I know that I cannot take my Requip tonight, or from now on for that matter, and I am trying to prepare myself for whatever could possibly happen. I've read a ton of posts on here and am prepared to take a dose of Calcium tonight before bed, hoping that will work for me like it did with someone else. I also just read that someone experienced a decrease in symptoms after going off Mirapex for a few days. So I am hopeful that I will find a way to get some rest until I can see a doctor and figure out a new plan. BTW, that may take some time because I am currently uninsured. JOY! I'm going to try massage, warm baths (not too warm!) and of course, walking around until I fall over. I am also going to try to sleep during the later morning hours if nighttime doesn't pan out for me. All that being said, I am already frustrated that I can't sleep!! LOL!!!

Now, I am only a couple weeks pregnant, max. However I have taken Requip every night for those past weeks. Does anyone know, is it possible the Requip did damage to the baby? Am I at risk for losing the baby? Is there anything I can do to keep that from happening? This is the one area I didn't seem to find written about on these boards, aside from the advice to stop the meds prior to becoming pregnant. This is unplanned so I wasn't able to do that. Any recommendations here?

Thanks. You all are major reassurance to me.

Sarah
~Sarah~

ViewsAskew
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Post by ViewsAskew »

Hi Sarah,

This sounds like a bit of surprise! Hopefully a happy one.

I wish I knew how to reassure you, but I don't. They don't study drugs like this in pregnancy, so they may do no harm at all...they just aren't studied, so they say you can't take them (wise). The only thing I can say would be to write Dr Buchfurer. He may have had patients in this situation before and might now what happened to them.

He's changed his email recently. Somno@verizon.net
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.

mackjergens
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RLS/ pregnant

Post by mackjergens »

Here is a web site link that seems to have alot of info about being pregnant and having rls. hope this is helpful

http://www.rls.org/Document.Doc?&id=183

SquirmingSusan
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Post by SquirmingSusan »

Congratulations! (I think :wink: ) Here's the nitty gritty from rxlist.com:

Pregnancy

Pregnancy Category C. In animal reproduction studies, ropinirole has been shown to have adverse effects on embryo-fetal development, including teratogenic effects. Ropinirole given to pregnant rats during organogenesis (20 mg/kg on gestation days 6 and 7 followed by 20, 60, 90, 120, or 150 mg/kg on gestation days 8 through 15) resulted in decreased fetal body weight at 60 mg/kg/day, increased fetal death at 90 mg/kg/day, and digital malformations at 150 mg/kg/day (24, 36, and 60 times the maximum recommended clinical dose on a mg/m2 basis, respectively). The combined administration of ropinirole (10 mg/kg/day, 8 times the maximum recommended human dose on a mg/m2 basis) and L-dopa (250 mg/kg/day) to pregnant rabbits during organogenesis produced a greater incidence and severity of fetal malformations (primarily digit defects) than were seen in the offspring of rabbits treated with L-dopa alone. No indication of an effect on development of the conceptus was observed in rabbits when a maternally toxic dose of ropinirole was administered alone (20 mg/kg/day, 16 times the maximum recommended human dose on a mg/m2 basis). In a perinatal-postnatal study in rats, 10 mg/kg/day (4 times the maximum recommended human dose on a mg/m2 basis) of ropinirole impaired growth and development of nursing offspring and altered neurological development of female offspring.

There are no adequate and well-controlled studies using REQUIP in pregnant women. REQUIP should be used during pregnancy only if the potential benefit outweighs the potential risk to the fetus.


With all that said, I wouldn't worry about it a whole lot. But you're going to want to get yourself in to see a doctor soon, so you can figure out something. Not getting any sleep during pregnancy is probably worse for a developing fetus than most medications. I think that the only category of meds that are known to be fairly safe during pregnancy is the opioids, like hydrocodone or methadone. And they're inexpensive as well.

For insurance, check out Medical Assistance-Pregnant Women. I found myself pregnant once, a long time ago, when my dh's employer had dropped us from insurance illegally. They have high income limits, and good coverage.
Susan

sarahjj
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Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

Wow, thanks for all the info. The pregnancy is welcome so I will accept all of your congrats! Now, here it is 5:30am and I haven't slept a wink. Worse, I cannot even take weight off my feet without my legs going nuts. Even with weight ON my feet my legs are out of control. And it just keeps getting worse with each passing minute. I've tried several things tonight: calcium (1800 mg), orgasms (that was the fun part), warm bath, wearing tights, stretching, etc. Nothing gave any relief for any period of time at all. At this moment, I am so frustrated that I just want to say "F*** this" and go take a pill! So this is the hard part. Thanks for the link to the dr and the medical insurance. Also for the information and encouragement. I will follow it all and see what happens. Now....how do I get through today and what the hell do I do tonight?
~Sarah~

Neco
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Post by Neco »

I wish I could tell you about something to take OTC, its really bad to be put in this kind of position..

I don't know how likely it will be that anyone will let you continue Requip during Pregnancy, so if I were you I would find a doctor right away who

A) Isn't afraid of the fact you have RLS & are pregnant
B) Isn't afraid to prescribe opiates in place of other RLS meds which are likely to be more harmful.

Being pregnant or quitting Requip, on their own are severely hard things to do with because of the RLS. But having to deal with increased RLS from two difference causes must be absolutely horrible :(

I think your only option here is either going to be finding a doctor who will prescribe you the right opiate (and you may have to try several to find one that works, starting from the weak end of the scale) no matter what it turns out to be.. It could be Hydrocodone, Oxycodone, or Methadone. Chances are one of those 3, with Methadone being the strongest. These are the kinds given to people who are merely quitting Requip or Mirapex as well, so I don't know how much of a workload the pregnancy will also stack ontop of the meds.

The good news is unlike other RLS meds, studied or unstudied, opiates present pretty much 0 risk to the development of your baby. The only problem to deal with is that when they are born, they will go through opiate withdrawal. It usually isn't life threatening or anything though, and I'm not 100% sure but they gave be able to give the baby other drugs to help ween him/her off as well.

We have another board member, who is planning on in Vitro once she gets her treatment sorted out. She started on Methadone but has had a rough time finding the right amount to help her through the day and night. It sounds like you have pretty severe, 24/7 RLS as well.

Your best chance is going to see a doctor who has no problems prescribing you opiates. Make it clear you are willing to try other things IF they are safe and IF they are listed as a treatment in the Mayo Clinic Algorithm, but that if it comes down to it you don't want to waste time with them if they won't at least consider the possibility of opiates.

Opiates are pretty much 99.9% effective for RLS, and should not be withdheld in patients where they are appropriate.


Here are some links you may find useful when shown to doctors, etc..

http://bb.rls.org/viewtopic.php?t=6579 - Pregnancy and RLS Risk

The Mayo Clinic Algorithm

http://www.mayoclinicproceedings.com/co ... l.pdf+html

mackjergens
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Post by mackjergens »

Talk to the dr about taking extra iron, I think this could be an issue while being pregnant

sarahjj
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Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

Thanks for all the advice. I am heading into my 2nd night, still sleepless and still moving. Now, because I have been in motion and on my feet for the past 36 hours straight, I have lots of pain in my back, hips, knees and feet. I would kill for the ability to lay down, even if it didn't come with sleep. I can hardly wait until tomorrow when I can call my OBGYN who hasn't heard from me in 4 years and beg for new meds that a pregnancy can tolerate. I hope HOPE they will see me tomorrow. I might stalk them if they don't.
~Sarah~

ViewsAskew
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Post by ViewsAskew »

Stalking might be in order, lol. One look at a woman who hasn't slept in several days would probably be enough...
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.

SquirmingSusan
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Post by SquirmingSusan »

Sarah, if you can't get in to see your preferred doctor right away, consider going to an urgent care or even the ER. Just tell them that you're pregnant, have RLS, and haven't slept in days. You're actually a lot more likely to get opioids at an ER than at a regular doctor, especially since most doctors can't prescribe narcotics at a first visit.

You could always try eating iron-fortified cereal and see if that helps. Some people get great relief just from that. Pregnancy can suck the iron right out of you, and sometime just getting it back into the bloodstream can help. It might not help, but it won't hurt.

I do hope you can get some decent treatment soon!
Susan

ViewsAskew
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Post by ViewsAskew »

Certainly eat iron fortified foods...but unless you know you are not usually high in ferritin or that doctors have suggested iron in the past, I'd suggest you be careful about taking extra iron. It's not frequent, but some people have hemachromatosis and shouldn't take iron. In one of the weirder medical paradoxes, you can have RLS and this condition.

It's probably overkill and a few days of it probably wouldn't hurt you or the baby.
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.

sarahjj
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Joined: Tue Jan 27, 2009 6:58 pm

Post by sarahjj »

Well, you all have been of tremendous help. I am so grateful there is a community like this available. Thank you SO MUCH! :D

So here's the update. I went to the ER this morning. The first thing they did, obviously, was a pregnancy test. It came back negative. As a woman who has her head on pretty straight (relatively speaking, please don't judge me on the past 60 hours!), I am confused. I took 2 pregnancy tests, (First Response Early Detection) and they both came back positive. I have so many pg symptoms, which is what made me take the tests to begin with. I am not trying to get pg, its not an ideal time and I am not ready (in regards to being pg and dealing with RLS at the same time). So its not like I was really REALLY hoping I was pg. While a baby would be welcome, my original reaction was S&%#!! How could 2 tests be wrong, from 2 different packages, bought from 2 different stores at 2 different times. I know, I am asking this question on the wrong discussion board. But just so you get where I am coming from....

I am so embarrased :oops: , not to mention, pissed :x that I spent the whole weekend in agony.

I'm so sorry to have set off a false alarm. You all were an immense help coming to my aid like that. So, now I'm going to go into prep mode. I'm going to go find a new Neuro, an OBGYN who can deal with RLS patients, and I'm going to prep so that next time it will be planned and there will be no emergencies to deal with.

Again, thanks to you all for being such a big help.
~Sarah~

ViewsAskew
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Post by ViewsAskew »

Huh...I wonder why two tests were both positive? Can something else make false positives? Although, I suppose a false positive is better than a false negative in this case, it still must have really shaken your world!

So, you're breathing again and now planning. Always a good thing (especially the breathing part).

No apologies needed...I would have assumed the exact same.
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.

Neco
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Post by Neco »

Yikes.. That's very weird. Does the package or instructions have any kind of litterature about error rates? Morever is it possible that hospital tests could still be wrong?

ViewsAskew
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Post by ViewsAskew »

Zach, I had the same thought...I would assume that the hospital has a better test...but I'd almost be thinking I'd want one more test, just to make sure.
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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