Thanks for the info guys!!
I appreciate it.
I often check these boards out, but rarley post.
Off Requip and on Ropinorole - Want to try Hydrocodone
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toxicfemme
- Posts: 8
- Joined: Sat Nov 08, 2008 7:36 pm
I've been taking hydrocodone (non-prescribed) to treat my RLS for about a year now, off & on. I admit that the first few times I took the pill, it was with a recreational intent. But, on a fluke, I took it one evening when my RLS symptoms were acting up like crazy & noticed that the hydrocodone completely took away my symptoms.
I have severe RLS, to the point where I'll have symptoms round the clock for a month or two, morning, noon & night. So, whenever I'm able to get my hands on hydrocodone (in the form of lortabs/vicodin) I'll take a pill at night. My main problem with RLS is that if causes me to constantly toss & turn every 10-30 seconds (I've counted) making it impossible for me to sleep. The hydrocodone allows me to lay absolutely still & takes away the electric feeling in my legs.
Just recently, I've gone to my doctor & started on Requip. I admitted to having taken lortabs for my RLS & told her that it was effective. So far, the Requip has not been effective. It's actually worsened my symptoms at night, to the point that my legs ache, which is very painful & keeps me up all night as well. I'm trying to stick with the treatment, as I've heard sometimes it can get worse before it gets better & that Requip becomes more effective over time. But, part of me just wants to beg my doctor to prescribe hydrocodone because I know its effective. But, I also know that its an opiate-derivative & therefore a highly controlled substance.. plus, I fear coming off as a "drug seeker" even though that is truly NOT the case.
I have severe RLS, to the point where I'll have symptoms round the clock for a month or two, morning, noon & night. So, whenever I'm able to get my hands on hydrocodone (in the form of lortabs/vicodin) I'll take a pill at night. My main problem with RLS is that if causes me to constantly toss & turn every 10-30 seconds (I've counted) making it impossible for me to sleep. The hydrocodone allows me to lay absolutely still & takes away the electric feeling in my legs.
Just recently, I've gone to my doctor & started on Requip. I admitted to having taken lortabs for my RLS & told her that it was effective. So far, the Requip has not been effective. It's actually worsened my symptoms at night, to the point that my legs ache, which is very painful & keeps me up all night as well. I'm trying to stick with the treatment, as I've heard sometimes it can get worse before it gets better & that Requip becomes more effective over time. But, part of me just wants to beg my doctor to prescribe hydrocodone because I know its effective. But, I also know that its an opiate-derivative & therefore a highly controlled substance.. plus, I fear coming off as a "drug seeker" even though that is truly NOT the case.
femme--
People with more personal experience will chime in shortly, but in case they don't:
The DA's (requip, mirapex) do cause some augmentation (worsening or lengthening of symptoms) in some people. The original theory with doctors was to up the dose until the medication overtook the augmentation. However, lately people are thinking that that can be harmful to the dopamine system, short- or long-term, and that it's better to back off of the DA until you get the best balance of treatment vs. augmentation. You may also find that a small dose of the DA, plus something else (e.g. a painkiller or benzo or anti-seizure) will improve results without causing more augmentation.
As I said, I'm sure someone else will come along with a better explanation, but in the mean time, you should peruse the multitudinous threads about requip, mirapex, and DA's in general. You could also take a look at the opioid-related threads. Careful and thorough self-education about how specific medications work (or don't work, or have side effects) will serve you well with your RLS. There are so many types we use, or at least try, that it's important to know the ups and downs of each one, because some of them work in very, very different ways from others, and doctors are not always as thoroughly educated or current as we would like them to be.
People with more personal experience will chime in shortly, but in case they don't:
The DA's (requip, mirapex) do cause some augmentation (worsening or lengthening of symptoms) in some people. The original theory with doctors was to up the dose until the medication overtook the augmentation. However, lately people are thinking that that can be harmful to the dopamine system, short- or long-term, and that it's better to back off of the DA until you get the best balance of treatment vs. augmentation. You may also find that a small dose of the DA, plus something else (e.g. a painkiller or benzo or anti-seizure) will improve results without causing more augmentation.
As I said, I'm sure someone else will come along with a better explanation, but in the mean time, you should peruse the multitudinous threads about requip, mirapex, and DA's in general. You could also take a look at the opioid-related threads. Careful and thorough self-education about how specific medications work (or don't work, or have side effects) will serve you well with your RLS. There are so many types we use, or at least try, that it's important to know the ups and downs of each one, because some of them work in very, very different ways from others, and doctors are not always as thoroughly educated or current as we would like them to be.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
Hi femme,
I had the same reaction to requip. My doctor kept uping the dose and telling me to take it earlier. Well the pain would always begin shortly after taking it. I quit taking requip and since then I have pain 24/7 so be very careful. I know some stop having pain and worsening of symptoms when they quit and some don't. Unfortunately mine got worse and it's hard to tell how any one of us is going to react to these meds.
I moved on to a mixture of gabapetin/hydrocodone for the last 2 years and have now been researching the longer lasting pain meds as the vicodin does not last for very long. I'd rather have something that lasts longer then keep having to tell the doctor that what she's giving me isn't enough. As I read further down, going into talk with the doctor with your research done is usually the best way to approach them. We'll see how it goes and good luck to you.
I had the same reaction to requip. My doctor kept uping the dose and telling me to take it earlier. Well the pain would always begin shortly after taking it. I quit taking requip and since then I have pain 24/7 so be very careful. I know some stop having pain and worsening of symptoms when they quit and some don't. Unfortunately mine got worse and it's hard to tell how any one of us is going to react to these meds.
I moved on to a mixture of gabapetin/hydrocodone for the last 2 years and have now been researching the longer lasting pain meds as the vicodin does not last for very long. I'd rather have something that lasts longer then keep having to tell the doctor that what she's giving me isn't enough. As I read further down, going into talk with the doctor with your research done is usually the best way to approach them. We'll see how it goes and good luck to you.
Meg
My school teachers were right! I couldn't sit still then and I still can't.
My school teachers were right! I couldn't sit still then and I still can't.
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toxicfemme
- Posts: 8
- Joined: Sat Nov 08, 2008 7:36 pm
Well, I didn't take my Requip last night & NO aching legs! I'm going to try to get in to see my doctor this week & tell her that I absolutely can't stand the aching. Its worse than RLS itself. I just hope that because I've only been on the Requip for a very short time (3 weeks) that the symptoms aren't permanent. They don't seem to be yet.
I guess I'm going to try to broach the subject of a hydrocodone prescription as delicately as possible, but I admit I'm very nervous about it. Primarily because I admitted use of hydrocodone for my RLS to my doctor, obviously getting the pills through illegal means. I'll do my best & hopefully she'll see that I am not a drug seeker, but seeking the pills because I know they work for my condition.
I guess I'm going to try to broach the subject of a hydrocodone prescription as delicately as possible, but I admit I'm very nervous about it. Primarily because I admitted use of hydrocodone for my RLS to my doctor, obviously getting the pills through illegal means. I'll do my best & hopefully she'll see that I am not a drug seeker, but seeking the pills because I know they work for my condition.
femme--
An option, if you've made your doctor leery of hydrocodone with your non-presciption (ab)use, would be a low dose of methadone. If you haven't been (ab)using any opioids recently, you might get away with about 5mg, or 10mg if it hasn't started getting better after a couple of days. I'm not a doctor, though, so I'm just taking a stab at a likely dose.
Methadone's a great painkiller, on par with oxycodone, I'd say. The obvious difference is that it does not produce a real buzz the way the other opioids do, and will in fact inhibit the effects of other opioids while it's in your system. That's why it's used for addiction recovery. And, that's why your doctor will be more likely to consider this if the hydrocodone is not acceptable.
If you do go this route, be very careful with methadone. It's peculiar in a few ways that can trip up someone who doesn't understand how it works. The main thing to know is that onset can take 1-3 hours, depending on how your guts work and on your metabolism. Thus, you'd take it earlier than you think you need it, and do NOT assume it's not working until at least 4 hours have passed. If you assume it's not working and it's simply not time yet, you may take another and then, a few hours later, have double the dose you needed, and, more dangerously, double the amount of respiratory depression. As methadone has a very long and variable half-life of 15-50 hours, you may go to bed feeling okay and then never wake up. Take great care when finding the appropriate dose, starting low and working slowly upwards.
There are many threads about methadone. About a year back, Mia (bharrod) started it and made the mistake of taking too much, so her thread's a good one to read. She's also become wary of it lately, so you might want to read that material as well, to get both sides of the story.
Personally, I take a some of both. I have mostly-evening-only RLS, but it's strong when it's active. Thus, to take enough methadone to cover it is to leave me a little groggy during the day (thanks to the long half-life). After a while, I told my doctor this was a problem and so now I take a couple of doses of the short-acting hydrocodone in the evening to cover the spike, and a very small dose of methadone around noon to cover the little bits I get in the day and early evening. It's a delicate balance and might not be appropriate to your RLS, but I figured an example is always educational in some way.
An option, if you've made your doctor leery of hydrocodone with your non-presciption (ab)use, would be a low dose of methadone. If you haven't been (ab)using any opioids recently, you might get away with about 5mg, or 10mg if it hasn't started getting better after a couple of days. I'm not a doctor, though, so I'm just taking a stab at a likely dose.
Methadone's a great painkiller, on par with oxycodone, I'd say. The obvious difference is that it does not produce a real buzz the way the other opioids do, and will in fact inhibit the effects of other opioids while it's in your system. That's why it's used for addiction recovery. And, that's why your doctor will be more likely to consider this if the hydrocodone is not acceptable.
If you do go this route, be very careful with methadone. It's peculiar in a few ways that can trip up someone who doesn't understand how it works. The main thing to know is that onset can take 1-3 hours, depending on how your guts work and on your metabolism. Thus, you'd take it earlier than you think you need it, and do NOT assume it's not working until at least 4 hours have passed. If you assume it's not working and it's simply not time yet, you may take another and then, a few hours later, have double the dose you needed, and, more dangerously, double the amount of respiratory depression. As methadone has a very long and variable half-life of 15-50 hours, you may go to bed feeling okay and then never wake up. Take great care when finding the appropriate dose, starting low and working slowly upwards.
There are many threads about methadone. About a year back, Mia (bharrod) started it and made the mistake of taking too much, so her thread's a good one to read. She's also become wary of it lately, so you might want to read that material as well, to get both sides of the story.
Personally, I take a some of both. I have mostly-evening-only RLS, but it's strong when it's active. Thus, to take enough methadone to cover it is to leave me a little groggy during the day (thanks to the long half-life). After a while, I told my doctor this was a problem and so now I take a couple of doses of the short-acting hydrocodone in the evening to cover the spike, and a very small dose of methadone around noon to cover the little bits I get in the day and early evening. It's a delicate balance and might not be appropriate to your RLS, but I figured an example is always educational in some way.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.
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toxicfemme
- Posts: 8
- Joined: Sat Nov 08, 2008 7:36 pm
Aiken -
Thanks for your reply. When I admitted to taking hydrocodone for my RLS, I did my best to explain to my doctor that I was NOT abusing it in any way. I take it only in the evenings when my RLS symptoms are really acting up. I don't take it with alcohol or anything else. I don't drive, I just stay totally at home.
I suppose methadone is something to consider. Although, I admit I'm rather leery of it. I've always thought of it as something highly dangerous, powerful & addictive. But, I suppose under the supervision of a health care professional & in controlled doses, it is something to think about.
As I think about it more & more, I'm considering perhaps printing up information on some of the alternate treatments out there (aside from Requip) to bring in with me when I see my doctor next. That way she can see that I really am doing my homework.
Thanks for your reply. When I admitted to taking hydrocodone for my RLS, I did my best to explain to my doctor that I was NOT abusing it in any way. I take it only in the evenings when my RLS symptoms are really acting up. I don't take it with alcohol or anything else. I don't drive, I just stay totally at home.
I suppose methadone is something to consider. Although, I admit I'm rather leery of it. I've always thought of it as something highly dangerous, powerful & addictive. But, I suppose under the supervision of a health care professional & in controlled doses, it is something to think about.
As I think about it more & more, I'm considering perhaps printing up information on some of the alternate treatments out there (aside from Requip) to bring in with me when I see my doctor next. That way she can see that I really am doing my homework.
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Printing stuff up is a great idea. The Mayo Clinic Algorithm is a great option. It's in one of the posts if you follow the link in my signature.
Also, getting either Clinical Management of Restless Legs Syndrome (Hening, Buchfurer and Lee) or Restless Legs Syndrome (Buchfurer, Hening and kushida) is fabulous. Since these are written by doctors, your PCP or other doc is more likely to read, listen, copy, or even order a copy of the book.
Also, getting either Clinical Management of Restless Legs Syndrome (Hening, Buchfurer and Lee) or Restless Legs Syndrome (Buchfurer, Hening and kushida) is fabulous. Since these are written by doctors, your PCP or other doc is more likely to read, listen, copy, or even order a copy of the book.
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.
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ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Yeah, another good thing about the two books recommended upthread is that they list EVERY potential drug to use with RLS and explain how and why.
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.
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Ultram (Tramadol) is also something you migh wish to research and talk to your Dr about. its a non narcotic pain med and for many rlser's it works well. I only have nightly rls, and for several yrs, used hydrcodone, but decided a couple yrs ago to see if Dr would let me try Tramadol and it has been great. IF I remember to take it before the rls starts, it will control mine. If not then I end up having to take hydrocodone.
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sniel2000@yahoo.com
- Posts: 10
- Joined: Tue May 08, 2012 10:58 pm
Re: Off Requip and on Ropinorole - Want to try Hydrocodone
Since I went off Requip for all the reasons you stated after taking it for 3-4 years....I have been taking one Hydrocodone each night. Once in a while I need to take another half, but that is it. I realize my RLS got worse over time due to the medication. The new rule is that there are three medications that should only be taken for 1 year and no more than two...Requip, Mirapex and another one. If you have had augmentation, then you should NEVER take it again. I was a guinea pig, as were many others. I have also read that it can cause brain damage. Nice. My withdrawal is still going on and I could write a book.......headaches, complete and utter fatigue, sleeplessness, and also the opposite.....I can sleep anywhere, anytime now...but pretty much during the day. I can fall asleep at night but cannot stay asleep. New findings also say there is another reason for that...Glutamate. But I will never take any of those meds again. I wish I could let everyone know what it does to your body. Good luck.