Hello everyone...I am glad to have found your wonderful site. Who would have thought that others have this same problem? I guess I'm not crazy after all...well not completely anyways!
I have suffered from this for longer than I can remember and only recently heard that there is a name for it. I spoke with my doctor for the first time about this just last week.
He prescribed 1mg Mirapex. Now in reading quite a few posts this seems to be high for a starting dose. Am I correct?
Also in many of the posts it is recommended that the drug be taken about 90 minutes prior to the onset of symptoms. How do I take this drug effectively when taking it only as required. If I don't have to take it every day isn't it bet that I don't. But then I wouldn't be taking it until I am already in agony and then what is the point??
I am also concerned about some of the problems I have read here associated with this drug. I am currently taking Percocet and Tylenol 3's to manage pain from an injury. Would I just be better off using the Tylenol 3 to help with the RLS...it seems to at least allow me to fall asleep...eventually that is.
Oh boy I see a steep learning curve here.
Does anyone have any advice or comments for me?
Mirapex dosage
I think 1 mg. of Mirapex is high to start out. They usually have you work up from the lowest dosage. I'm on .125 mg and have not had to increase it. I used to be on Requip, and kept upping the dose to the 'recommended' dosage and wound up with augmentation - RLS 24 hours a day, every day.
That's why I won't increase my low dosage; and I do take it every night at 7. I know it works because one night I forgot to take it and I woke up at 12:30 because my legs were kicking violently!
I'm not an expert, I just know from reading these posts that a lot of us have trouble with Mirapex or Requip, especially at high doses.
Leora
That's why I won't increase my low dosage; and I do take it every night at 7. I know it works because one night I forgot to take it and I woke up at 12:30 because my legs were kicking violently!
I'm not an expert, I just know from reading these posts that a lot of us have trouble with Mirapex or Requip, especially at high doses.
Leora
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ViewsAskew
- Moderator
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If you need it less than 4 days a week, see if you can get carbidopa/levadopa instead. In the US, that is called Sinemet. This works very quickly - like 20 minutes - and works well if you don't take it frequently. If you need it more than 3-4 days a week, then it's not a good choice at all.
You are completely right that 1 mg of Mirapex to start is much too high. Starting dose is usually given as .125 mg - 1/8 of what your doc gave you!
It's hard to use Mirapex as needed, as you've dicovered. Many of us also find it has side effects that dissapate over time, but using it as needed (PRN) runs the risk of never getting used to it.
Of course, just my opinion, FWIW.
You are completely right that 1 mg of Mirapex to start is much too high. Starting dose is usually given as .125 mg - 1/8 of what your doc gave you!
It's hard to use Mirapex as needed, as you've dicovered. Many of us also find it has side effects that dissapate over time, but using it as needed (PRN) runs the risk of never getting used to it.
Of course, just my opinion, FWIW.
Last edited by ViewsAskew on Thu Nov 08, 2007 6:28 am, edited 1 time in total.
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.
mirapex dosage
Hi Cherry and welcome to this group. As far as whether you are taking the right dosage of mirapex, we are not in the position to say yes or no as we are not drs nor have any medical knowledge. If you feel that this mg is too high you should contact your dr and discuss this with him.
On this forum go to the sticky post "Managing RLS" as there is an excellent article from the Mayo Clinic Algorithm. Please read it and if you are able to print it out, please do so and bring it to your dr.
Another good site read is www.rlshelp.org
I myself take mirapex. I take half of the .125mg around 4 pm so to stop the onset of rls starting up and then I take .125mg about one hour before going to bed. Another thing to remember is what works for one may not work for another. This is just what my dr told me to do.
Please keep us posted on how you are doing. It is a great support group and hope that this has been of some help to you.
Also, we have a chat room going on every Monday night. I live in Az. so I get on at 7 pm az. time (we do not change time and we are mountain time) Do not know the time difference is it for you. Just go to rls.org and it will have a place there noting to chat. I do not have the exact words but go on onto this site and you will see it. Hope to see you on the chat line Monday night.
Cherry I just went on the rls.org and the first link Restless Leg Syndrome click on that and then you will see the first box on the left hand side saying Chat. Hope that this helps you
On this forum go to the sticky post "Managing RLS" as there is an excellent article from the Mayo Clinic Algorithm. Please read it and if you are able to print it out, please do so and bring it to your dr.
Another good site read is www.rlshelp.org
I myself take mirapex. I take half of the .125mg around 4 pm so to stop the onset of rls starting up and then I take .125mg about one hour before going to bed. Another thing to remember is what works for one may not work for another. This is just what my dr told me to do.
Please keep us posted on how you are doing. It is a great support group and hope that this has been of some help to you.
Also, we have a chat room going on every Monday night. I live in Az. so I get on at 7 pm az. time (we do not change time and we are mountain time) Do not know the time difference is it for you. Just go to rls.org and it will have a place there noting to chat. I do not have the exact words but go on onto this site and you will see it. Hope to see you on the chat line Monday night.
Cherry I just went on the rls.org and the first link Restless Leg Syndrome click on that and then you will see the first box on the left hand side saying Chat. Hope that this helps you
Charlene
Taking one day at a time
Taking one day at a time
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mackjergens
- Posts: 406
- Joined: Sat Jul 21, 2007 5:10 am
Cherry,
I would call my Dr and ask if the dose he suggest is for Parkinsons or RLS. In the world of RLS its a known fact that RLSer's usually always use alot less of these meds than those with parkinsons.
First I would read everything that I could possibly read about RLS and the meds used to treat it. educate yourself, because I think you will find that MOST Drs know very little about RLS.
I have never used the Parkinson meds, but I have read many post from those that do use them and most all say you should start out with a very low dose to prevent augumentation and rebound of your rls.
The suggestion of printing out the info from Mayo is an excellant one,as most Drs will read info from Mayo Clinic.
Please read everything you can about RLS, know the meds used to treat rls and the meds that are known to make rls worse. There are list of OTC meds such as Tylenol PM or any antihistimines that will increase your rls, there is also a list of foods known to make rls worse.. Just so MUCH to read and learn about, but by doing so, you can save yourself the misery of taking something that will increase your rls.
Be sure and check to make sure that Any med you are taking for some other problem is not affecting your rls.
www.rlshelp.org is an excellent site for list of meds/etc.
www.rls.org
www.wemove.org
and many more sites start with one and continue reading all sites.
I would call my Dr and ask if the dose he suggest is for Parkinsons or RLS. In the world of RLS its a known fact that RLSer's usually always use alot less of these meds than those with parkinsons.
First I would read everything that I could possibly read about RLS and the meds used to treat it. educate yourself, because I think you will find that MOST Drs know very little about RLS.
I have never used the Parkinson meds, but I have read many post from those that do use them and most all say you should start out with a very low dose to prevent augumentation and rebound of your rls.
The suggestion of printing out the info from Mayo is an excellant one,as most Drs will read info from Mayo Clinic.
Please read everything you can about RLS, know the meds used to treat rls and the meds that are known to make rls worse. There are list of OTC meds such as Tylenol PM or any antihistimines that will increase your rls, there is also a list of foods known to make rls worse.. Just so MUCH to read and learn about, but by doing so, you can save yourself the misery of taking something that will increase your rls.
Be sure and check to make sure that Any med you are taking for some other problem is not affecting your rls.
www.rlshelp.org is an excellent site for list of meds/etc.
www.rls.org
www.wemove.org
and many more sites start with one and continue reading all sites.
C2, hello and another welcome. I don't take Mirapex so others will have to give you their perspective on that point. Lots of trial and error in the world of rls. Seems to me that if your doc thinks you can kill 2 birds with one stone while staying on the regimen outlined for your injury (i.e. no more/no less) than that might be worth considering. However, not sure you want to get too comfortable with those meds for rls on a long term basis as those typically are not you first line of attack for rls (see Mayo Clinic Algorithm). Sooner or later, Mirapex (or perhaps something else) will be in the picture if that is what you have been prescibed. What does you doc think of the idea?
I am glad you rls appears to be intermittent and stays at that level. Thing lots of us find is that once the rls starts it is often somewhat difficult to reign in. So, generally it is a good idea to be proactive and have your meds on board to hopefully ward off or control you rls symptoms. Guess the question is how you do that if you don't need to take meds every day and, on days when you do, how do you know ahead of time..Mmmmmm! Ann's comment about Sinemet does make sense in that respect. I used it for several years when my rls was more at the intermittent level. It was great for plays, movies, plane trips, and occasional evenings. Worked quite quickly and relatively effective. So, that may be something else you could possibly discuss with your doc.
I think if you do some reading (stickies) your learning curve will be shortened considerably. Once again, welcome and best of luck. Let us know how things go and hope to visit with you when we "chat."
M.
I am glad you rls appears to be intermittent and stays at that level. Thing lots of us find is that once the rls starts it is often somewhat difficult to reign in. So, generally it is a good idea to be proactive and have your meds on board to hopefully ward off or control you rls symptoms. Guess the question is how you do that if you don't need to take meds every day and, on days when you do, how do you know ahead of time..Mmmmmm! Ann's comment about Sinemet does make sense in that respect. I used it for several years when my rls was more at the intermittent level. It was great for plays, movies, plane trips, and occasional evenings. Worked quite quickly and relatively effective. So, that may be something else you could possibly discuss with your doc.
I think if you do some reading (stickies) your learning curve will be shortened considerably. Once again, welcome and best of luck. Let us know how things go and hope to visit with you when we "chat."
M.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
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SquirmingSusan
- Posts: 3028
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- Location: Minnesota
- Contact:
Hi Cherry, and welcome to our message board.
If it were me, I would call the doctor and ask for a lower dosage, or for a med that can be used intermittently, like Sinemet or an opioid. And since you already have an opioid, codeine in the Tylenol 3, you may just want to stick with that, if the side effects are tolerable and it doesn't keep you awake. (Many of the opioids do seem to keep some of us awake.)
I know I'm probably just repeating what everyone else has said, but it's late and I don't have time to read everyone else's response. But yes, 1mg of Mirapex is a huge starting dose.
One thing you'll find on this message board is that many of us have had such horrendously bad experiences with doctors that we no longer trust their judgment and knowledge in this area.
It really is good to find the Mayo Clinic Algorithm and memorize it! And if you need information from a competent doctor, write to Dr. Buchfuhrer. His website is http://www.rlshelp.org. He usually answers emails the same day. (Try getting that kind of response from most doctors!)
The dopamine agonists, like Mirapex and Requip, can be wonderful drugs for many people. But they really are meant to be used on a daily basis, and you really do have to watch for augmentation.
Again, welcome to the board! I hope you find the kind of support that you need here.
If it were me, I would call the doctor and ask for a lower dosage, or for a med that can be used intermittently, like Sinemet or an opioid. And since you already have an opioid, codeine in the Tylenol 3, you may just want to stick with that, if the side effects are tolerable and it doesn't keep you awake. (Many of the opioids do seem to keep some of us awake.)
I know I'm probably just repeating what everyone else has said, but it's late and I don't have time to read everyone else's response. But yes, 1mg of Mirapex is a huge starting dose.
One thing you'll find on this message board is that many of us have had such horrendously bad experiences with doctors that we no longer trust their judgment and knowledge in this area.
It really is good to find the Mayo Clinic Algorithm and memorize it! And if you need information from a competent doctor, write to Dr. Buchfuhrer. His website is http://www.rlshelp.org. He usually answers emails the same day. (Try getting that kind of response from most doctors!)
The dopamine agonists, like Mirapex and Requip, can be wonderful drugs for many people. But they really are meant to be used on a daily basis, and you really do have to watch for augmentation.
Again, welcome to the board! I hope you find the kind of support that you need here.
Susan
Before Isaid I use pexola and it was so good.I passed 10 happydays but then we made it 250 mg it was again good I passed 3 days more then suddenl those terrible nights began they were horrible and stressfull .We were all awake.Then I made my best decision I began to lower my med.Today is the last day of my medicine it made me worse than before.My doc says if I am happy like this then it may be so,on Friday she will take my EMG
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scootermom
- Posts: 13
- Joined: Fri Jul 07, 2006 12:27 am
- Location: Las Vegas
- Contact:
Mirapex
Hi everyone, I just found this forum. I have had RLS for as long as I can remember. I was looking online for some other medical issue I have when it said a symptom was RLS. I looked up RLS and said, Yeah I have that. I found a DR put me on Requip. Within 2 days my RLS was 24/7. He kept that and added oxcodin, klonopin, vicidin (not at the same time). Everything made me tired for days and the RLS was no better, and I wasn't sleeping.
Now I'm on Mirapex, .25 in the morning and .50 at night. I don't think it is helping anymore. Is that what augmenting is? I also didn't want anymore of the hard stuff, so now I take Tylonol PM at night, (2), and that gets me to sleep. I don't always sleep through the night, but I can get to sleep.
My poor husband, I literally kicked him off the bed! haha
(was funny to me) I didn't wake up from the kick, I woke up from his scream!
Anyway, sorry to blab! Sure glad I found people who understand!
Now I'm on Mirapex, .25 in the morning and .50 at night. I don't think it is helping anymore. Is that what augmenting is? I also didn't want anymore of the hard stuff, so now I take Tylonol PM at night, (2), and that gets me to sleep. I don't always sleep through the night, but I can get to sleep.
My poor husband, I literally kicked him off the bed! haha
(was funny to me) I didn't wake up from the kick, I woke up from his scream!
Anyway, sorry to blab! Sure glad I found people who understand!
Re: Mirapex
scootermom wrote:Hi everyone, I just found this forum. I have had RLS for as long as I can remember. I was looking online for some other medical issue I have when it said a symptom was RLS. I looked up RLS and said, Yeah I have that. I found a DR put me on Requip. Within 2 days my RLS was 24/7. He kept that and added oxcodin, klonopin, vicidin (not at the same time). Everything made me tired for days and the RLS was no better, and I wasn't sleeping.
Now I'm on Mirapex, .25 in the morning and .50 at night. I don't think it is helping anymore. Is that what augmenting is? I also didn't want anymore of the hard stuff, so now I take Tylonol PM at night, (2), and that gets me to sleep. I don't always sleep through the night, but I can get to sleep.
My poor husband, I literally kicked him off the bed! haha
Anyway, sorry to blab! Sure glad I found people who understand!
HI Scootermom. What mgs of requip did your dr put you on? Did hed/she put you on the starter pak first. With having 24/7 rls within two days it sounds like you are augmenting (having rls anytime of the day or night)
OMG I hope that you are still not on all the above meds at the same time
Have you looked at the sticky post "Managing RLS" as there is an excellent post from Mayo Clinic Algorithm. Please, please read it and make a copy to give to your dr. Another good site to read is www.rlshelp.org
Please keep us posted on how you are doing. I am really concerned that you are on all of these meds (hope not at the same time) Does your dr have knowledge of rls and does he take time to talk and listen to you?
That is so important.
Please never apologize for going on what is happening to you as we learn fronm each other and I am glad that you have found us, but not glad that you have rls.
Charlene
Taking one day at a time
Taking one day at a time
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scootermom
- Posts: 13
- Joined: Fri Jul 07, 2006 12:27 am
- Location: Las Vegas
- Contact:
Mirapex - Meds
I am not on all of those meds at the same time. I was on Requip and one of those at a time. I kept changing the hard stuff because I didn't like taking it or it made me feel worse.
Now I'm only on Mirapex and some kind of non-script sleeping aid. I cannot fall asleep at night because of my legs without some kind of sleeping aid, sleeping pills give me a hangover, so I take the non script. I get up fine. About noon, I need a nap. My naps are 3-4 hours. I have a full time job, so I cannot nap during the week, but sometimes it is hard to get through the day. On the weekends, I do the naps because I can.
My other problem now is being tired all the time. I was diagnosed with narcolepsy at one time, but have been out of my provigil (my wake up pill) for a while now. I moved and haven't found a new doctor yet. Now my Mirapex script has no refills and I have an appt on the 16th with a neurologist. I hope I can get the wake up pills again. Supposedly he knows about RLS. I also have POTS and was told that the meds I was on for that made my legs worse. I have been off those meds for almost a year and my legs haven't changed, so I think I need to go back on those.
I hate all these pills, especially if they aren't going to work! I don't want to go back on the hard stuff, but after being on vicodin, oxy, and kolnopin, when all they do is make me tired, I don't know what to do. I don't want to be tired all the time. If I'm not sleeping, my legs are hurting. I want to be awake for my kids and not drugged.
Thank you all for being here and understanding. It's hard to explain to people something that they cannot see or feel.
Now I'm only on Mirapex and some kind of non-script sleeping aid. I cannot fall asleep at night because of my legs without some kind of sleeping aid, sleeping pills give me a hangover, so I take the non script. I get up fine. About noon, I need a nap. My naps are 3-4 hours. I have a full time job, so I cannot nap during the week, but sometimes it is hard to get through the day. On the weekends, I do the naps because I can.
My other problem now is being tired all the time. I was diagnosed with narcolepsy at one time, but have been out of my provigil (my wake up pill) for a while now. I moved and haven't found a new doctor yet. Now my Mirapex script has no refills and I have an appt on the 16th with a neurologist. I hope I can get the wake up pills again. Supposedly he knows about RLS. I also have POTS and was told that the meds I was on for that made my legs worse. I have been off those meds for almost a year and my legs haven't changed, so I think I need to go back on those.
I hate all these pills, especially if they aren't going to work! I don't want to go back on the hard stuff, but after being on vicodin, oxy, and kolnopin, when all they do is make me tired, I don't know what to do. I don't want to be tired all the time. If I'm not sleeping, my legs are hurting. I want to be awake for my kids and not drugged.
Thank you all for being here and understanding. It's hard to explain to people something that they cannot see or feel.
Lauren
www.youravon.com/lmajor
www.youravon.com/lmajor
Hi Scootermom I am sorry for what you are going through; however I am glad that you are not taking these meds all at once. I hope that I have not offended you as I was just concerned.
Have you ever been to a support group for rls? I have info for a support group in Las Vegas. I have been in contact with the group leader from time to time and she seems very nice. I am going to give you the info
Contact person: Annie Flader telephone # 702-396-2812 e-mail address
LasVegas@rlsgroups.org
I have no idea how far this group is from you; however you may want to call her or e-mail as I am sure she can give you some good info.
I hope this is of some help to you.
Have you ever been to a support group for rls? I have info for a support group in Las Vegas. I have been in contact with the group leader from time to time and she seems very nice. I am going to give you the info
Contact person: Annie Flader telephone # 702-396-2812 e-mail address
LasVegas@rlsgroups.org
I have no idea how far this group is from you; however you may want to call her or e-mail as I am sure she can give you some good info.
I hope this is of some help to you.
Charlene
Taking one day at a time
Taking one day at a time
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scootermom5
- Posts: 7
- Joined: Sat Apr 05, 2008 10:44 pm
Vegas RLS
No offense taken at all. I like everyone's opinions...I hope that is why we are here.
I know Annie and she is great. I've been to the group meetings and it is nice to meet people who understand.
I can't wait for the new DR, I hope that he knows about RLS.
Thanks!
I know Annie and she is great. I've been to the group meetings and it is nice to meet people who understand.
I can't wait for the new DR, I hope that he knows about RLS.
Thanks!
Lauren
www.youravon.com/lmajor
www.youravon.com/lmajor
Thanks for your nice response and it is true that different opinions is great to hear. I am glad that you are going to a support group. When you go to your next support group meeting please tell Annie that Charlene from the Lake Havasu Support group says hi.
Please keep us informed about your dr and yes it is so important that your dr knows about rls. It is also important that he is willing to work with you and above all listens to you. I am very fortunate as my neurologist has knowledge of rls as he has it and has alot of empathy for people.
I do not know if you have checked this forum that you are on now as there is a good sticky post called "Managing RLS" as Mayo Clinic Algorithm has an an excellent article. If you can please read it and also give your dr a copy of it too. I made one for my my dr as I will be seeing him this coming Friday. Even though he does rls, it is still good to give him a copy of it.
Good luck to you and please keep us posted. This is an excellent support group and we will be here for you whenever you need us.
Please keep us informed about your dr and yes it is so important that your dr knows about rls. It is also important that he is willing to work with you and above all listens to you. I am very fortunate as my neurologist has knowledge of rls as he has it and has alot of empathy for people.
I do not know if you have checked this forum that you are on now as there is a good sticky post called "Managing RLS" as Mayo Clinic Algorithm has an an excellent article. If you can please read it and also give your dr a copy of it too. I made one for my my dr as I will be seeing him this coming Friday. Even though he does rls, it is still good to give him a copy of it.
Good luck to you and please keep us posted. This is an excellent support group and we will be here for you whenever you need us.
Charlene
Taking one day at a time
Taking one day at a time