I'm having the same augmentation problems most have with Sinemet (carbidopa-levodopa), but I was wondering if anyone had ever switched drugs long enough that they were able to go back to using just 1 Sinemet pill / night ... like resetting your threshold and starting over from scratch, without the augmentation.
Just curious. I'm currently on 1200 mg gabapentin and 400 mg levadopa, which I'm not happy about.
Once I max these out, I wonder where I can go.
Thanks in advance for any advice or insight I can get.
Is it possible to "reset" your level of Sinemet?
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Re: Is it possible to "reset" your level of Sinemet?
Welcome to the discussion board.
You are wondering if you could have a drug holiday from Sinemet and then go back to using it at a lesser dose.
Sinemet is not a medication that you should be taking daily. it inevitably leads to augmentation in a very short time, much shorter than the other DAs such as Mirapex or Ropinerole.
If you can get off the Sinemet I'd suggest that you discuss the alternative medications available.
It is likely that you will need help from your doctor while you get yourself off the Sinamet, does he know about augmentation.
You wonder where you can go once your current medications max out..... There are alternatives, there are combinations of medications. Many of us use different medications because we respond differently to the various drugs. It does often become a case of trial and error but there are many options and we are here to try and help.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
You are wondering if you could have a drug holiday from Sinemet and then go back to using it at a lesser dose.
Sinemet is not a medication that you should be taking daily. it inevitably leads to augmentation in a very short time, much shorter than the other DAs such as Mirapex or Ropinerole.
If you can get off the Sinemet I'd suggest that you discuss the alternative medications available.
It is likely that you will need help from your doctor while you get yourself off the Sinamet, does he know about augmentation.
You wonder where you can go once your current medications max out..... There are alternatives, there are combinations of medications. Many of us use different medications because we respond differently to the various drugs. It does often become a case of trial and error but there are many options and we are here to try and help.
This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
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Re: Is it possible to "reset" your level of Sinemet?
OK, that's great information. A drug holiday isn't possible at this point, unless my Dr gives me an Rx for something else like the drugs you mentioned. Trial and error pretty well describes the situation I'm in, but I'll check out that book and see if there's some good information in there.
I liked the Sinemet since it worked immediately without any apparent side effects, but my Dr is probably not as well versed in these things as he should be.
Thanks again.
I liked the Sinemet since it worked immediately without any apparent side effects, but my Dr is probably not as well versed in these things as he should be.
Thanks again.
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Re: Is it possible to "reset" your level of Sinemet?
briandines, if the only dopamine agonist (DA) medication that you have taken so far is the short acting Sinemet and your augmentation is not too severe, then the next step is often to move to a different DA that is longer acting. The Neupro patch would be a good next option if it isn't too expensive. Sinemet works very quickly and then is out of your system, which can create some significant swings in your dopamine levels. Neupro (and the ER versions of Mirapex and Requip) provides a constant influx of medicine throughout the day. Some doctors feel that augmentation is made worse by the constant up and down of the dopamine levels in the blood and brain due to taking pills(s).
Another option would be a low level opiate, such as Tramadol or one of the alpha-2-delta meds such as gabapentin, Horizant or Lyrica. You could take this for a time to recover from the Sinemet induced augmentation. Then, your doctor might decide to put you back on one of the DAs that are more typically used to treat RLS, i.e. Mirapex (pramipexole) and ropinirole (Requip) after you had been away from the Sinemet for a month or so.
Another option would be a low level opiate, such as Tramadol or one of the alpha-2-delta meds such as gabapentin, Horizant or Lyrica. You could take this for a time to recover from the Sinemet induced augmentation. Then, your doctor might decide to put you back on one of the DAs that are more typically used to treat RLS, i.e. Mirapex (pramipexole) and ropinirole (Requip) after you had been away from the Sinemet for a month or so.
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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Re: Is it possible to "reset" your level of Sinemet?
If you stopped it completely for awhile, you might be able to. But, you will always augment and need to increase your dose. Same thing with any dopaminergic drug, such as pramipexole or rotigotine.
I have been safely using pramipexole without augmenting by doing the following. First, I was off of it for awhile. In my case it was about three years, but I'd think a month or so would be adequate. Second, I never take it more then 4-5 days a week. I take something else 2-3 days a week. Third, I follow the new guidelines (not FDA, but from the more advanced researchers) that say never more than .25 mg per dose.
A Polar Bear noted, Sinemet shouldn't be used more then 4 days a week MAX! Also, there is a mg limit, but I can't remember it off the top of my head.
I have been safely using pramipexole without augmenting by doing the following. First, I was off of it for awhile. In my case it was about three years, but I'd think a month or so would be adequate. Second, I never take it more then 4-5 days a week. I take something else 2-3 days a week. Third, I follow the new guidelines (not FDA, but from the more advanced researchers) that say never more than .25 mg per dose.
A Polar Bear noted, Sinemet shouldn't be used more then 4 days a week MAX! Also, there is a mg limit, but I can't remember it off the top of my head.
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.
Re: Is it possible to "reset" your level of Sinemet?
I don't know why doctors even prescribe Sinemet. I took it for a short while and felt like I was tripping on lsd, no exaggeration, and still had rls. Two days after quitting I surfed some big beautiful waves and it was the most surreal out of body experience I have had in a long time. I kept going back out because the waves were so good which was just crazy. I guess some people must do better on it but I think it is a sign of the doctors lack of experience with rls.
Re: Is it possible to "reset" your level of Sinemet?
Sinemet was my first anti RLS drug. I augmented fairly quickly when used every night (my GP didn't say not to use it daily) but then used it on car trips and movies until my script ran out.
I think if your RLS is bad enough to require daily medication it is too bad to use Sinemet.
I think if your RLS is bad enough to require daily medication it is too bad to use Sinemet.
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Re: Is it possible to "reset" your level of Sinemet?
Badnights still uses Sinemet for times when she needs a bit more and doesn't want to take more opioids. For many of us it works excellently when used 2-3 days a week and at low doses. It is the only drug we have that works in about 20 minutes - that is really fast. of course, as with all drugs we use, it doesn't work for everyone. And, when used regularly, it's about 100% that you will augment...it's just a matter of when.
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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Re: Is it possible to "reset" your level of Sinemet?
Again, thanks to everyone who posted. I don't think my Dr. is an expert at this RLS treatment. After a sleep study, he put me on Sinemet and it worked great for a couple months, after years of sleep problems that drove me to despair, so I've trusted him all along. But I'll take this information to him and see if we can come up with a plan that gets me away from Sinemet and into a medication without all the augmentation.