Hi -
Is it OK to name your RLS doc in the forum? I've seen Dr. Buchfuhrer named, but that seems to be the only one. I'm wondering what meds my doc has given his pregnant patients . . . Many folks have offered info on what meds a doc might give his pregnant patients or how their doc treated them when pregnant, which has been very helpful. It seems different docs are willing to give different meds.
The reason is that I want my husband to do his own research on the meds I might possibly take BEFORE I go through In vitro fertilization again. We are in somewhat of a hurry to do IVF because it appears that, without too many details, my eggs may be prematurely planning on calling it quits.
My next neuro appt is on 11/5 and my In Vitro Fertilization drugs could start on 11/10. I would call my neuro but I am afraid that I've bothered him too much already . . .
Thanks for any info.
Afraid to drive my doc crazy . . or make him think Im crazy
hi helen,
When we where trying to get pregnant i stopped any meds and got by on the home remedies.It wasn't nice!!!!Certainly with your situation you would have to speak to your neuro to find out what you could still have in your system when you begin the process.
I know you said you didnt want to bother your neuro again but personally i would think it's your only real choice.
Maybe he could recommend something suitable for you but i dont think anyone apart from him should.
Sorry couldnt be of more help,takecare(&goodluck)
When we where trying to get pregnant i stopped any meds and got by on the home remedies.It wasn't nice!!!!Certainly with your situation you would have to speak to your neuro to find out what you could still have in your system when you begin the process.
I know you said you didnt want to bother your neuro again but personally i would think it's your only real choice.
Maybe he could recommend something suitable for you but i dont think anyone apart from him should.
Sorry couldnt be of more help,takecare(&goodluck)
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ViewsAskew
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I'd agree with the others...the only way to know is to ask. You need to know that based on what you are saying and what is important to you.
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.
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.
-
cornelia
Helen,
go to www.rlshelp.org and click on 'treatment page' (on the left) and under nr 7 you find exactly what you want to know!
Corrie
go to www.rlshelp.org and click on 'treatment page' (on the left) and under nr 7 you find exactly what you want to know!
Corrie
Corrie,
Thanks much - but I think this page is only helpful up to a point.
If your particular doctor is not willing to prescribe any of the drugs listed, then you are still out of luck, unless you are able to go shopping for a new doctor.
Also, I found in my pregnancy last year that some drugs are NOT OK during first trimester, but are OK in second and third trimester, for example, lorazepam-ativan, but it gets lumped into Category D because of its first trimester effects.
Also, does anyone know how often the medical information is verified to be up to date (it says the page was modified recently but that is all).
That said - I applaud everything Dr. Buchfuhrer has done for RLS sufferers and think rlshelp.org is a great site. I wish I could be his patient, but alas, I am on the East coast.
Helen
Thanks much - but I think this page is only helpful up to a point.
If your particular doctor is not willing to prescribe any of the drugs listed, then you are still out of luck, unless you are able to go shopping for a new doctor.
Also, I found in my pregnancy last year that some drugs are NOT OK during first trimester, but are OK in second and third trimester, for example, lorazepam-ativan, but it gets lumped into Category D because of its first trimester effects.
Also, does anyone know how often the medical information is verified to be up to date (it says the page was modified recently but that is all).
That said - I applaud everything Dr. Buchfuhrer has done for RLS sufferers and think rlshelp.org is a great site. I wish I could be his patient, but alas, I am on the East coast.
Helen
Looking at Category B, it looks like the "big" painkillers may be your only option for the full length of pregnancy, unless I suppose you are comfortable going for periods without treatment at all..
It depends on how bad your RLS is and how often it occurs or if it is always present.. There is even the phenominon of pregnancy RLS, which can happen in both patients diagnosed with RLS and patients with no RLS history (for them it goes away after the pregnancy).. I guess in someone who already has RLS it could potentially worsen the condition temporarily.
But looking at the list, a low dose of methadone is probably your best bet.. I'm sure most doctors would try to say otherwise, but I'm not a doctor and I'm not talking about your "only" option.. I simply think it is likely going to be the best.. All the googling I did turned up pages that say methadone is "safe" during pregnancy.. They didn't give a specific dose, or say not to take it during certain trimesters or before/shortly after conceiving so I am assuming it is pretty safe in the long run.
If you are looking for a single med you can take during this period, for the entire time, without having to juggle or quit things, I'd recommend you strongly advocate with your physician about considering it, and find out what objections they might have, and if any medical reasons can be verified.
I'll assume a "low dose" of methadone is something around 5 - 15mgs.. considering most MMT patients are on way higher doses, some going into the 100's of milligrams. Oxycontin (the same drug listed as Percodan, Percs being immediate release Oxy being time-released) may also be an option but can carry a substantial addiction risk IMHO.. The pharma industry was in hot water for failing to disclose just how much more addictive it was than they were leading people to believe.
NOT a reason to not take it, just a warning.. Methadone carries its own risks of addiction, but I suppose it all comes down to the person.. Oxycontin or Methadone are pretty suitable drugs as they only contain the opiate & no other medications like Asprin, Tylenol, IBuprofen, etc. And both are time released medications usually working over 12 hours and providing relief for much longer depending on the patient.. (I can get 24 hours out of my 15mgs of methadone, but some people say they can get by with dosing only every 2 or 3 days.. But they don't have RLS so its a different situation).
The upside to sticking with those two drugs in particular is even if you choose Oxycontin and then develop a problem or concerned about addictive behavior you can just jump to methadone for the duration of your pregnancy... After that you could wean off the methadone and then resume your normal RLS meds, or if you find the methadone superior in controlling your RLS symptoms you could simply ask the doc about staying on it at a low dose.
If you choose methadone and can get it with no problems you still may want to start on a weaker opiate, like Oxycontin or Hydrocodone, and work your way up to the methadone after a few days or a week.. The most dangerous time for new methadone patients is during their initial exposure to the drug, but I'm not trying to scare you.. It's just a VERY strong medication and its why you see so many partying kids, or other patients in the news because of overdose.. The kids have no business taking it and are likely taking it with other drugs, that may also be CNS depressants, and adults who have died have either received poor instructions or were prescribed way too much by their doctor, or were also using multiple pharmaceuticals when they shouldn't have been.
Again not to scare you, but when I reccomend methadone to anyone I feel obligated to tell them some of the risks and help sort out fact from myth.
Either is a suitable drug for an RLS patient that meets the diagnosis criteria, and I don't see anything wrong with pregnant RLS patients taking it. Sorry the post was so long, just wanted to be thorough and give you accurate as possible info.
It depends on how bad your RLS is and how often it occurs or if it is always present.. There is even the phenominon of pregnancy RLS, which can happen in both patients diagnosed with RLS and patients with no RLS history (for them it goes away after the pregnancy).. I guess in someone who already has RLS it could potentially worsen the condition temporarily.
But looking at the list, a low dose of methadone is probably your best bet.. I'm sure most doctors would try to say otherwise, but I'm not a doctor and I'm not talking about your "only" option.. I simply think it is likely going to be the best.. All the googling I did turned up pages that say methadone is "safe" during pregnancy.. They didn't give a specific dose, or say not to take it during certain trimesters or before/shortly after conceiving so I am assuming it is pretty safe in the long run.
If you are looking for a single med you can take during this period, for the entire time, without having to juggle or quit things, I'd recommend you strongly advocate with your physician about considering it, and find out what objections they might have, and if any medical reasons can be verified.
I'll assume a "low dose" of methadone is something around 5 - 15mgs.. considering most MMT patients are on way higher doses, some going into the 100's of milligrams. Oxycontin (the same drug listed as Percodan, Percs being immediate release Oxy being time-released) may also be an option but can carry a substantial addiction risk IMHO.. The pharma industry was in hot water for failing to disclose just how much more addictive it was than they were leading people to believe.
NOT a reason to not take it, just a warning.. Methadone carries its own risks of addiction, but I suppose it all comes down to the person.. Oxycontin or Methadone are pretty suitable drugs as they only contain the opiate & no other medications like Asprin, Tylenol, IBuprofen, etc. And both are time released medications usually working over 12 hours and providing relief for much longer depending on the patient.. (I can get 24 hours out of my 15mgs of methadone, but some people say they can get by with dosing only every 2 or 3 days.. But they don't have RLS so its a different situation).
The upside to sticking with those two drugs in particular is even if you choose Oxycontin and then develop a problem or concerned about addictive behavior you can just jump to methadone for the duration of your pregnancy... After that you could wean off the methadone and then resume your normal RLS meds, or if you find the methadone superior in controlling your RLS symptoms you could simply ask the doc about staying on it at a low dose.
If you choose methadone and can get it with no problems you still may want to start on a weaker opiate, like Oxycontin or Hydrocodone, and work your way up to the methadone after a few days or a week.. The most dangerous time for new methadone patients is during their initial exposure to the drug, but I'm not trying to scare you.. It's just a VERY strong medication and its why you see so many partying kids, or other patients in the news because of overdose.. The kids have no business taking it and are likely taking it with other drugs, that may also be CNS depressants, and adults who have died have either received poor instructions or were prescribed way too much by their doctor, or were also using multiple pharmaceuticals when they shouldn't have been.
Again not to scare you, but when I reccomend methadone to anyone I feel obligated to tell them some of the risks and help sort out fact from myth.
Either is a suitable drug for an RLS patient that meets the diagnosis criteria, and I don't see anything wrong with pregnant RLS patients taking it. Sorry the post was so long, just wanted to be thorough and give you accurate as possible info.
Zach:
Thanks for your response and all the information, including the warnings.
I heard from my Neuro. He said that he would consider giving codeine, hydrocodone or synthetic opiates like propoxyphene during pregnancy. I spoke to my IVF coordinator and she is going to check with the reproductive endocrinologist about whether he is OK with the drugs. Now just to convince myself and my husband!!
I have been doing a little reading about methadone and there is a lot of scary stuff out there. I actually posted some questions (which you have answered) on another thread before I saw your reply to this thread.
I read that once a woman is taking methadone in pregnancy, she is not permitted to taper, which means the baby could have problems when born. However, I read a great story about a woman who found out she was pregnant while she was on methadone and the baby turned out fine. She said that she was told that the infant withdrawal is only a possibilty and is not something that happens automatically. Here story is here: http://www.topix.com/forum/drug/methado ... UV3R3VAQSA
There also seem to be a lot of folks who have difficult withdrawals from it.
I am so glad that methadone works for you and for so many, and that if and when I reach the point that nothing else works, that methadone is out there . . . if a doc will give it.
Thanks for your response and all the information, including the warnings.
I heard from my Neuro. He said that he would consider giving codeine, hydrocodone or synthetic opiates like propoxyphene during pregnancy. I spoke to my IVF coordinator and she is going to check with the reproductive endocrinologist about whether he is OK with the drugs. Now just to convince myself and my husband!!
I have been doing a little reading about methadone and there is a lot of scary stuff out there. I actually posted some questions (which you have answered) on another thread before I saw your reply to this thread.
I read that once a woman is taking methadone in pregnancy, she is not permitted to taper, which means the baby could have problems when born. However, I read a great story about a woman who found out she was pregnant while she was on methadone and the baby turned out fine. She said that she was told that the infant withdrawal is only a possibilty and is not something that happens automatically. Here story is here: http://www.topix.com/forum/drug/methado ... UV3R3VAQSA
There also seem to be a lot of folks who have difficult withdrawals from it.
I am so glad that methadone works for you and for so many, and that if and when I reach the point that nothing else works, that methadone is out there . . . if a doc will give it.
I've written a big response in the "Methadone Users" thread which addresses a lot of concerns, if you haven't seen that one already (I literally just posted it :p )
So my advice is to go with what your doctor is OK with, as long as they are open to SOME opiates.
Stay away from propoxyphene, if you have the option to take Hydrocodone you may find it more effective than Codeine. However Hydrocodone comes with its own risks.
Many people who take it are fine. But Hydrocodone was my drug of choice when I began abusing, no other opiate makes me feel quite the way it does, so it became a dangerous liability to me. Not saying that will happen to you, but I found Codeine about 90% as effective and the Vicodin 100%.
To get that 90% or close to 95% relief I was right up near the maximum daily dose of 400mgs however.. But some people here take Codeine for their RLS and it works fine for them, at pretty standard doses.
It's up to you. You could start out with the Codeine, if that doesn't work switch to hydrocodone (I reccomend 10/325 pills to cut acetaminophen intake) and if that still isn't enough, Oxycodone. Oxycontin is a time released form of the medication, I think it comes in a minimum of 20mg pills.
However it is possible that one 20mg pill could give you 24 hours of relief, most certainly 2 pills at the most (1 every 12 hours). I reccomend discussing the time released Oxycontin with your doctor, and express your concerns if you have any. The reason I reccomend it is because I believe receiving a controlled, stready amount of the drug over a long period of time greatly reduces the risk of addiction, and maximizes the effectiveness of treatment while maintaining the lowest overall dose possible. ( a few mgs every hour vs 5 or 10mg ever 4 - 6? You be the judge).
Methadone works in much the same way. It is time released and I get 24 hours give or take in either direction. Overall I urge you to discuss time released medication with your doctor, and if it is the case, let them know you believe it is a safer method of administration.
Hope this reply help you out with any other concerns. Feel free to ask more questions..
p.s. If you really wanted to bicker, you could point out to him that methadone is a synthetic opiate like all the others :p Codeine is only semi-synthetic since the sap of papaver somniferum actually contains alkaloids of opium, morphine, and codeine
Just some useless info.. *don't take my advice and mention that to him
So my advice is to go with what your doctor is OK with, as long as they are open to SOME opiates.
Stay away from propoxyphene, if you have the option to take Hydrocodone you may find it more effective than Codeine. However Hydrocodone comes with its own risks.
Many people who take it are fine. But Hydrocodone was my drug of choice when I began abusing, no other opiate makes me feel quite the way it does, so it became a dangerous liability to me. Not saying that will happen to you, but I found Codeine about 90% as effective and the Vicodin 100%.
To get that 90% or close to 95% relief I was right up near the maximum daily dose of 400mgs however.. But some people here take Codeine for their RLS and it works fine for them, at pretty standard doses.
It's up to you. You could start out with the Codeine, if that doesn't work switch to hydrocodone (I reccomend 10/325 pills to cut acetaminophen intake) and if that still isn't enough, Oxycodone. Oxycontin is a time released form of the medication, I think it comes in a minimum of 20mg pills.
However it is possible that one 20mg pill could give you 24 hours of relief, most certainly 2 pills at the most (1 every 12 hours). I reccomend discussing the time released Oxycontin with your doctor, and express your concerns if you have any. The reason I reccomend it is because I believe receiving a controlled, stready amount of the drug over a long period of time greatly reduces the risk of addiction, and maximizes the effectiveness of treatment while maintaining the lowest overall dose possible. ( a few mgs every hour vs 5 or 10mg ever 4 - 6? You be the judge).
Methadone works in much the same way. It is time released and I get 24 hours give or take in either direction. Overall I urge you to discuss time released medication with your doctor, and if it is the case, let them know you believe it is a safer method of administration.
Hope this reply help you out with any other concerns. Feel free to ask more questions..
p.s. If you really wanted to bicker, you could point out to him that methadone is a synthetic opiate like all the others :p Codeine is only semi-synthetic since the sap of papaver somniferum actually contains alkaloids of opium, morphine, and codeine
Just some useless info.. *don't take my advice and mention that to him
IT is a very bad leg day. Bad bad bad.
Switched from neurontin to tylenol/codeine 1-2 pills 1-2 times per day 7 days ago. Things were going fine until yesterday when I did not take my .5 mg of lorazepam. Last dose of lorzepam was Monday.
Got very good hormone levels yesterday at the fertility doc. Also had a painful root canal. Received all my injectible hormones in the mail on Tuesday . . . terrible trouble sleeping last night due to legs. Took 3 pills by 1 am and had only one left for the day time today. Started the pills for the IVF cycle today.
Why is it that I only feel bad since I stopped the ativan? Zach, do you have any idea? My psych and neuro say that the lorazepam shouldn't help that much! I need to take only what I'll be allowed to take when pregnant, so I can know how bad it is going to be, so I can cancel the IVF if I need to . . . feeling very worried and discouraged. Maybe I should call the neuro . . .
Switched from neurontin to tylenol/codeine 1-2 pills 1-2 times per day 7 days ago. Things were going fine until yesterday when I did not take my .5 mg of lorazepam. Last dose of lorzepam was Monday.
Got very good hormone levels yesterday at the fertility doc. Also had a painful root canal. Received all my injectible hormones in the mail on Tuesday . . . terrible trouble sleeping last night due to legs. Took 3 pills by 1 am and had only one left for the day time today. Started the pills for the IVF cycle today.
Why is it that I only feel bad since I stopped the ativan? Zach, do you have any idea? My psych and neuro say that the lorazepam shouldn't help that much! I need to take only what I'll be allowed to take when pregnant, so I can know how bad it is going to be, so I can cancel the IVF if I need to . . . feeling very worried and discouraged. Maybe I should call the neuro . . .
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ViewsAskew
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The benzos are known to help some people. In studies, they tend to help fewer people than dopaminergics or opiates, but that doesn't mean that the people they help aren't helped considerably. The studies just say fewer people were helped, not how much it helped those who were helped.
Does that make sense? I had a hard time figuring out how to type it, so...
Another option is that you are in withdrawal from it (it takes a few days after stopping it for it to kick in). Do you have any other odd symptoms such as pain, lack of appetite, nausea - generally feeling like you have a cold or the flu?
Does that make sense? I had a hard time figuring out how to type it, so...
Another option is that you are in withdrawal from it (it takes a few days after stopping it for it to kick in). Do you have any other odd symptoms such as pain, lack of appetite, nausea - generally feeling like you have a cold or the flu?
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.
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.
I'm thinking this may have something to do with withdrawal as well.
Even weak benzo's can be hard and uncomfortable to stop. I'd try to give it another week or so.. Ultimately if you are still having issues I would discuss raising your opiate dose by an additional 1 pill to see if it helps. Raising it now might even help with the withdrawal but I am only speculating.
If you are still incomfortable after another week or two I would really consider trying a stronger opiate if you can get that as an option.
Benzo's should also be tapered off of when possible.. I believe you can get lorazepam in .25mg and maybe even lower, so you could also discuss that with your doctor. I think I was on 0.25mg when I tried it, and if you could go the taper route, you could start there and hopefully be comfortable, then after another week split the pill in half, and then after another week try stopping completely.
Even weak benzo's can be hard and uncomfortable to stop. I'd try to give it another week or so.. Ultimately if you are still having issues I would discuss raising your opiate dose by an additional 1 pill to see if it helps. Raising it now might even help with the withdrawal but I am only speculating.
If you are still incomfortable after another week or two I would really consider trying a stronger opiate if you can get that as an option.
Benzo's should also be tapered off of when possible.. I believe you can get lorazepam in .25mg and maybe even lower, so you could also discuss that with your doctor. I think I was on 0.25mg when I tried it, and if you could go the taper route, you could start there and hopefully be comfortable, then after another week split the pill in half, and then after another week try stopping completely.
Thanks for responding Ann & Zach.
I did have a bout of nausea/puking and lower GI distress yesterday that started mid afternoon and I'm still feeing a bit fragile. I broke down and took a lorazepam because I remembered that it was given in liquid form to my mom for nausea in the last few days of her battle with cancer.
Two years ago, I went from .5 mg to nothing fairly easily . .. I guess one's body changes.
I had assumed that the sickness was due to one of three things: 1) stomach bug going around the office; 2) the birth control pills the fertility doc has me on; 3) the amoxicillin the doc gave me after my root canal.
OK - I just left a message with the psychiatrist - maybe he'll give me some further advice on how he'd like me to proceed.
The difficulty is the need to be off lorazepam completely in a fairly short period of time. Officially, I should be off by the time they put the embryos back(some time between Thanksgiving and 12/5). Personally, I'd like to be off before I start the expensive injectible meds (between 11/19 and 11/24) and soon enough that I can be assured that I can cope reasonably without lorazepam. I'm terrified of being preggo and trapped. (Of course, there is a 70% chance that I won't become pregnant--but it worked on the first try last time.) I think I'll also leave a message with the neurologist asking if there is any possibilty of raising number of codeine/tylenol pills I can take.
I believe you all and the neuro that I can feel fairly comfortable with low doses of methadone or hydrocodone, but I don't know if I could convince my hubby or the reproductive endocrinologist.
Thanks so much for the feeback. Hope you are both well.
Helen
I did have a bout of nausea/puking and lower GI distress yesterday that started mid afternoon and I'm still feeing a bit fragile. I broke down and took a lorazepam because I remembered that it was given in liquid form to my mom for nausea in the last few days of her battle with cancer.
Two years ago, I went from .5 mg to nothing fairly easily . .. I guess one's body changes.
I had assumed that the sickness was due to one of three things: 1) stomach bug going around the office; 2) the birth control pills the fertility doc has me on; 3) the amoxicillin the doc gave me after my root canal.
OK - I just left a message with the psychiatrist - maybe he'll give me some further advice on how he'd like me to proceed.
The difficulty is the need to be off lorazepam completely in a fairly short period of time. Officially, I should be off by the time they put the embryos back(some time between Thanksgiving and 12/5). Personally, I'd like to be off before I start the expensive injectible meds (between 11/19 and 11/24) and soon enough that I can be assured that I can cope reasonably without lorazepam. I'm terrified of being preggo and trapped. (Of course, there is a 70% chance that I won't become pregnant--but it worked on the first try last time.) I think I'll also leave a message with the neurologist asking if there is any possibilty of raising number of codeine/tylenol pills I can take.
I believe you all and the neuro that I can feel fairly comfortable with low doses of methadone or hydrocodone, but I don't know if I could convince my hubby or the reproductive endocrinologist.
Thanks so much for the feeback. Hope you are both well.
Helen