NEED TO CHANGE MEDS
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KATHYY
NEED TO CHANGE MEDS
Hello to all and thanks in advance for any helpful advice I am recieve. I have had rls for almost 20 years...and for the last few years I have had great success with the drug Permax. But now the dose I need is too large and my doctor wants me to try Requip. It has been a week now...and while the Requip does help with the feelings of rls I am not sleeping for very long...3 to 4 hours. I am now waiting on a call back from my Doctor because as of last night he didn't know what to suggest to me as far as another drug to try. I sure wish the Permax still worked. I think the Requip is keeping me from sleeping even in the day time so I can not "catch up" on my missed sleep. If I was still working...I would be a mess right now. As it is with the holiday coming...I am too tired to do anything that I need to do...and I am starting to stress about that. People who have never had rls just don't understand what this is like. Thank you so much for being here and I wish you all a restful nights sleep.
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Kathy, sorry to hear about your troubles and that the meds have stopped working. There could be many things going on. I think the best information that we have to offer is contained in the sticky posts in the New to RLS section. It it a lot of reading, but when you are done, you'll have lots of information, including information that can help your doctor.
Many of us have had to change meds, especially the DAs. Often changing from one to another is successfulm but as you've found, it can be tough, and you might have to try more than one. It's really important to know as much as you can, in my opinion, though. Sometimes our doctors don't know as much as we'd like, and all of our knowledge is a good defense.
If you think you have augmentation, there may be something else you can do, but it won't be fun. At the RLSF conference, one of the researchers told us that he believes that when you have significant augmentation, the best treatment is to stop ALL drugs for a while (week at least). I know how hard that is (I'm not sure he does), but it does make sense. Other drugs often don't work well at this time anyway, and you can't know what you need to treat until the augmentation stops.
At any rate, that's at least something else to think about. In fact, maybe I should add that to the information in the sticky post.
Glad you found us - I hope someone else has some other advice.
Ann
Many of us have had to change meds, especially the DAs. Often changing from one to another is successfulm but as you've found, it can be tough, and you might have to try more than one. It's really important to know as much as you can, in my opinion, though. Sometimes our doctors don't know as much as we'd like, and all of our knowledge is a good defense.
If you think you have augmentation, there may be something else you can do, but it won't be fun. At the RLSF conference, one of the researchers told us that he believes that when you have significant augmentation, the best treatment is to stop ALL drugs for a while (week at least). I know how hard that is (I'm not sure he does), but it does make sense. Other drugs often don't work well at this time anyway, and you can't know what you need to treat until the augmentation stops.
At any rate, that's at least something else to think about. In fact, maybe I should add that to the information in the sticky post.
Glad you found us - I hope someone else has some other advice.
Ann
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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kathyy
changing meds
Thank you so much for your reply. I have gotten good information here many years ago. That is how I found out about Permax. I do think I have augmentation going on. Maybe stopping meds for awhile will help the requip work better??? As it is now I have found the the Requip only works for about 4 hours. I have the restless leg sensation now and it is the middle of the afternoon...something that I usually don't have a problem with.
My doctor will be away for the holiday so I will have to manage without him. When he gets back I will have to show him some of the material I have found here....to maybe suggest something different then the requip.
Thank you again and I hope you and everyone will have a restfull holiday.
My doctor will be away for the holiday so I will have to manage without him. When he gets back I will have to show him some of the material I have found here....to maybe suggest something different then the requip.
Thank you again and I hope you and everyone will have a restfull holiday.
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ViewsAskew
- Moderator
- Posts: 16589
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Kathy, depending on how long you've had augmentation and how severe it is, it could be that stopping all drugs would allow the Permax to work again. There is a woman on the Yahoo RLS board that routinely does this between Mirapex and Requip (for several years). She takes a small dose of Mirapex. When she feels it is losing its effectiveness, she immediately switched to Requip for 2-3 weeks. Then she goes back to her low dose of Requip.
For several years, she has never has to increase her dose! She still takes only .125 or .25 mg of Mirapex.
Of course, this is just her story, but it makes sense to me that this would work. It stops the mechanism that causes augmentation somehow. Eventually, RLS does get worse for some people, though, so it's possible the dose would have to increase slightly over time.
Requip does have a shorter half-life than Mirapex or Permax. That could be why it doesn't seem to want to work for you for a long time period. Since the DAs do seem to work, though, it might make sense to stop them to see what happens with augmentation, maybe take one of the drugs from another category (a benzo, an opioid, or a anti-seizure, all as listed in the algorithm) for a couple of weeks, and then try Mirapex. It does last longer than Requip. Then, every few months, you could take a couple week break from it by using one of the other drugs. Maybe you could get a few years out of this. Of course, I'm not a doctor, and this is just me blabbering!
Oh, while you were reading, did you see the information about life-style management? It's really important to get your ferritin tested - iron therapy helps many. It's also important to see what life-style changes you can make that can lessen the need for drugs. As mine has gotten worse, the life-style changes have less effect, but I can still reduce the amount of the drug I take through these methods.
http://bb.rls.org/viewtopic.php?p=7605#7605 second post in this thread addresses lifestyle, sleep, meds, and the algorithm with links to posts that discuss the meds themselves
Ann
For several years, she has never has to increase her dose! She still takes only .125 or .25 mg of Mirapex.
Of course, this is just her story, but it makes sense to me that this would work. It stops the mechanism that causes augmentation somehow. Eventually, RLS does get worse for some people, though, so it's possible the dose would have to increase slightly over time.
Requip does have a shorter half-life than Mirapex or Permax. That could be why it doesn't seem to want to work for you for a long time period. Since the DAs do seem to work, though, it might make sense to stop them to see what happens with augmentation, maybe take one of the drugs from another category (a benzo, an opioid, or a anti-seizure, all as listed in the algorithm) for a couple of weeks, and then try Mirapex. It does last longer than Requip. Then, every few months, you could take a couple week break from it by using one of the other drugs. Maybe you could get a few years out of this. Of course, I'm not a doctor, and this is just me blabbering!
Oh, while you were reading, did you see the information about life-style management? It's really important to get your ferritin tested - iron therapy helps many. It's also important to see what life-style changes you can make that can lessen the need for drugs. As mine has gotten worse, the life-style changes have less effect, but I can still reduce the amount of the drug I take through these methods.
http://bb.rls.org/viewtopic.php?p=7605#7605 second post in this thread addresses lifestyle, sleep, meds, and the algorithm with links to posts that discuss the meds themselves
Ann
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.