Sinemet CR for RLS

MandoJohnny · Post by **MandoJohnny** » Mon Sep 25, 2006 1:38 pm

I am now trying my third med for RLS. Both Requip and Nuerontin left me drowsy during the day. Now my internist has me trying Sinemet CR, which is a Parkinson's drug sometimes used for RLS. The first two nights and days have been OK. I have found mixed reviews on the web. Any experiences with Sinemet for RLS?

sleepyred · Post by **sleepyred** » Mon Sep 25, 2006 2:55 pm

I'm on my 2nd week of Requip. My RLS was making me tired so I can't say if it's the requip or that it is not helping my RLS yet. My legs are feeling better, but I'm not sure my tiredness is from the Requip or getting used to a new mask. It seems any mask I try right now is leaking and I'm getting pretty frustrated!

Sleepyred

Good luck - keep us posted of your progress with your new meds.

kteague · Post by **kteague** » Mon Sep 25, 2006 3:43 pm

Hi. Having taken Sinemet for 5 years (side effects and all) for RLS/PLMD, a new neuro doc switched me to Mirapex, telling me Sinemet is best saved for a last ditch effort for when the disorder does not respond to any other treatment. It's time of effectiveness is limited, and it's best not to play your Ace so early in the game if you don't have to.

Should you and your doc decide to continue with the Sinemet, feel free to contact me and I can give you some tips for optimizing it's effectiveness. It's all about what you eat and when.

But first, did you get a Ferritin level to make sure it is at least 50 or 60 before trying meds?

Best wishes.

Kathy

whatrdreamsmadeof · Post by **whatrdreamsmadeof** » Mon Sep 25, 2006 5:35 pm

I tried sinemet for 2 months. first one pill a day then 2 at nite.......the dr, said the only way to tell if it was working........i didn't know I had rls.......severe according to the dr. was if i slept better........and well i didn't ........so i quit...........would like to avoid a liver transplant as i already take enough meds.

NyNurse33 · Post by **NyNurse33** » Mon Sep 25, 2006 5:52 pm

I have only administered Sinemet CR (levodopa/carbidopa) for patients with parkinsons, so I can't give you any opinions. What is your dosage? 25/100 or 50/200? This is the sustained release version of the med that you are taken. You should take it @ the same time every night. Sometimes the benefit can take several weeks or months to take place. There are some side effects that you should be aware of, check them all out. All meds have side effects so don't be alarmed. Basically the med improves muscle control, allowing more normal body movement. Mirapex is another choice.

Has anyone else heard the correlation between OSA and parkinsons disease? I haven't investigated it, but when I went to the lab over the summer for my titration, the RT was telling us about it. Something about the statistics of people with OSA and parkinsons.

kteague · Post by **kteague** » Mon Sep 25, 2006 9:45 pm

Hi. Hadn't heard of OSA and Parkinson's connection. Makes me wonder if years of repeated oxygen deprivation contributes to the brain damage seen in Parkinson's. Hmmm.... Will have to look that up and see what's out there.

But I did see something where people with REM sleep disorders have an increased risk of developing Parkinson's, although the person in the story had been dealing with interrupted REM sleep for decades with no Parkinsonism symptoms.

It seems all these Parkinson's meds are difficult to maintain due to side effects. Just because I take Mirapex does not mean I am saying it is preferable in regards to side effects. I read that all dopamine agonists have the potential to cause compulsive behaviors. Not sure if Sinemet, which is a supplement, not an agonist, has that particular side effect.

Be mindful that on all these meds, including Sinemet, there's a fine line between helping and hurting. Cross that line and symptoms increase, so it is best to use the absolute minimum effective dosage. My old doc increased the dosage on the Sinemet rather than figure out that protein within a few hours before taking the med rendered it useless. Just be informed.

Kathy

SpookyFodder · Post by **SpookyFodder** » Tue Sep 26, 2006 1:35 am

Hi. I've been using Sinemet for RLS as well (100/25). I am allowed to take double this if needed but I have not had to thus far. I wasn't aware I had RLS either. It showed up during my sleep study and in the follow up conversation with the sleep doc. All I know is that I used to have severe pain in my legs at night (and sometimes throughout the day) and now I don't. So I guess it is working for me. Should I be concerned about augmentation? Is augmentation permanent?

kteague · Post by **kteague** » Tue Sep 26, 2006 7:03 am

SpookyFodder - please get a second opinion on taking the Sinemet, and ask them the questions I've raised. And ask a different type of doctor - maybe a neurologist who deals with movement disorders. My augmentation symptoms went away after quitting the medication.

Kathy

MandoJohnny · Post by **MandoJohnny** » Tue Sep 26, 2006 9:18 am

A follow up on this. I didn't mention that it was my primary care physician who prescribed the Sinemet. He is a really good guy and great for everything else, but he has shown before that he doesn't know sleep stuff. This is why I asked the question.

After the feedback I got on this thread, I called my sleep doc and the answer I got was that Sinemet was not the right drug and that I should stop it. Apparently it does work for RLS for a while, but then, as someone mentioned, the augmentation effect kicks in. I was advised to go back on Requip, but start with only a half the prescribed 1.0 tablet and also make sure I take it 3 hours before bedtime, not later. That should solve the daytime drowsiness problems.

SpookyFodder · Post by **SpookyFodder** » Tue Sep 26, 2006 3:31 pm

please get a second opinion on taking the Sinemet, and ask them the questions I've raised

Thanks I'll do that.

gracie97 · Post by **gracie97** » Tue Sep 26, 2006 8:23 pm

Glad to hear you went off the Sinemet.

Have you tried Mirapex for RLS?

The neurologist/sleep specialist who prescribed it for me said he found most people did better on Mirapex than Requip -- fewer side effects and works better (and that was the case for me, with the improved performance indicated by sleep tests on each drug).

HOWEVER, I've also been told by neurologists the #1 precipitator of RLS episodes is leg pain and that chronic Achilles tendonitis, in particular, has a high rate of co-occurance with RLS.

With that in mind, I set out to try everything (including physical therapy) to cure my 20 year case of Achilles tendonitis and eventually found a cure: Z-Coil spring shoes. (I have no financial interest in the product.)

It took the Z-Coils about 6 months to completely eradicate my stubborn case of Achilles tendonitis. And then the RLS faded away over the next year or so! (And I was bad off enough that I was taking meds every night for RLS for years.) It's a great relief to be through with that extremely annoying problem!

While Z-Coils (which very gently stretch the back of the leg with every step) may not help every person with RLS or even just Achilles tendon problems, it may be worth your while to aggressively treat any leg pain or discomfort you have in the hopes of reducing RLS.

Grace

Sinemet CR for RLS

Sinemet CR for RLS

Reqip

RLS Meds

sinemet

OSA, Parkinson's and Meds

Sinemet

Mask

Additional Comments: Aussie Heated hose for rain out/PapCap Headgear and chin strap