I'm new...

[Dr. Grammy]

Excellent--I've printed it out, saved it as an internet Favorite, and also saved it as a computer file for future reference!

[Polar Bear]

Problems with levodopa treatment include augmentation
and rebound. Augmentation is defined as a worsening
of RLS symptoms earlier in the day after an evening dose
of medication, including earlier onset of symptoms, increased
intensity of symptoms, or spread of symptoms to
the arms.16 Up to 70% of patients taking levodopa daily will
develop augmentation, and the risk increases with daily
doses of 200 mg or more.17 The risk of augmentation may
be lower with intermittent use, such as fewer than 3 times a
week, but this has not been established firmly. Patients
should be warned about the phenomenon because taking
additional doses of levodopa results in worsening augmentation.
If augmentation occurs, the drug should be discontinued
and another agent substituted. Rebound, the recurrence
of RLS in the early morning, occurs in 20% to 35% of
patients taking levodopa.17,18

This is an extract from the Mayo Clinic Algorithm. It talks about the high augmentation rate of Levadopa which is another name for Sinemet.
If your doctor is made aware of this then why should you have to go through the hoops of trying it.

[ViewsAskew]

Yes, please print out a copy of the Algorithm and take it to your next appointment, or better yet, call and ask if she'll accept a copy to read, and then quiz her on it the next time you come in to discuss your treatment.


I don't mean to sound badgering, but so many of us have suffered so much because of ill-informed, or outright malicious doctoring of this nature. We take each persons suffering very personally, because we know what they have been through.

Well said, Zach.

I am saying the following as a WED sufferer, not as a moderator - and please let me say I am not a doctor...

I absolutely believe that very few people should use Sinemet. The only people who should are those with intermittent WED who need it less than 4 days a week and who take less than 200 mg per day.

I also believe that no one should ever use it if he or she had augmented on a dopaminergic. I am not sure if this is a faulty memory as I can't find it in the books I have, but I seem to recall that once you've augmented on a dopamine agonist, you may try a different dopamine agonist, but should never use carbidopa/levadopa. I wish I knew if I've made that up or if I actually did read it somewhere.

I do think that most up-to-date neuros would pretty much follow the above...but, as Zach said, too many of us have suffered at the hands of doctors that should have known better - and many who told us they were experts.

Now, I fully admit that I in no way have a neutral perspective; my situation was severely worsened by a neuro who didn't know enough (though he said he did) and caused much harm to me. Part of that harm was using Sinemet after augmentation on Mirapex, which caused me the worst 30-40 hours of WED imaginable. I was in constant motion the whole time, with uncontrollable limb movements, WED in both arms and both legs, and anxiety that was almost unbearable.

Even through that distorted lens, I still think there are some things that aren't worth trying, even to build trust with your doctor. I suppose this is all speculation, as we don't know this doctor and s/he may be in complete agreement with what we're saying. But, if it were me, I'd be armed with the algorithm and the Clinical Management of RLS (a book by Hening, Buchfuhrer and Lee). If s/he suggested Sinemet as the next course of treatment, I'd carefully navigate the waters - something that it sounds like you already know how to do and understand the importance of - but hold my ground that I'd really prefer an alternative. If s/he would not budge, I'd find another doctor, as that would signal two things:

1. S/he isn't up to date
2. S/he is not going to be someone willing to work with me

Many of us know a lot about WED and it's treatment. Most of us need a doctor who trusts us, too, and is willing to partner with us. It's not an easy relationship for many of us to find.

[SleepyCharlie]

Dr. Grammy,

i came across your messages this morning, and wish to add my vote for opiate treatment for your RLS. I have needed medication to control my RLS for over twenty years. Sinemet worked for 10, then I experienced augmentation and switched to Mirapex, which lasted another 10 years. In response to more augmentation I added hydrocodone, one 10 mg per night with a reduced amount of Mirapex (only .325mg daily) and the RLS was under control. I've been relatively symptom-free for two years under this regimen, but I am now increasing the hydrocodone to 15mg at bedtime and decreasing the Mirapex, in an attempt to control more augmentation symptoms and reduce the Mirapex. My doctor believes the hydrocodone is actually a safer drug than Mirapex, as people have used hydrocodone for a longer time and the drug's effects on the body are well-researched. Since I am not taking it 24/7, I will not become addicted to the drug. (A silly worry in a way, since I've already been addicted to Sinemet and Mirapex in an attempt to live with RLS). It is a fraction of the cost of other meds and leaves me clear-headed in the morning after a good night of sustained sleep. I know there is some fear out there about opiates, but I'm convinced they are the best way to control this disease for those of us who have exhausted other remedies. It helps with the various aches and pains of aging, and doesn't make be groggy like the Mirapex and Sinemet did. I am fortunate to have an excellent physician who has RLS herself and has treated me for the past 20+ years. She is the physician advisor for our RLS support group here and annually surveys the research for new information on RLS. Good luck! SleepyCharlie

[Dr. Grammy]

Does hydrocodone truly leave you clearheaded?

Side effects of Requip and/or neurontin--feeling vague, confused, and woozy--are making daily life a joyless chore.

I felt unbearably sleepy and confused on clonazepam, but my current regimen is almost worse. I can't think creatively. I can only do routine things.

I understand what people are saying about Sinemet... it seems to be what's happened on Requip/neurontin. I've had to keep adding doses. Until last week I'd managed to "last" until 8am before my first dose of Requip (.5 mg at 8am, noon, 4pm, then 2 mg at 8pm). I wake up at 4am, but had been able to brush off the emerging symptoms while reading the paper etc. But this week I've had to start taking my first dose at 4am, since I wake up with whole-body jerks every 10 seconds or so.

[SleepyCharlie]

Yes, I feel absolutely clear-headed after taking hydrocodone. And I've taken it now for 2 1/2 years. My doctor said that it is out of my system in 4-6 hours, and I take it at 8:00 PM each night.

Sleepy Charlie

[fraujoolie]

@ViewsAskew, you are right. Once you augment on a dopamine agonist, you can not take another dopamine agonist. It's time for opioids at that point. This is what Dr. B told me on my first appointment with him. I was taking some dangerous giant dose of Mirapex daily (thanks to the old neurologist), and having new symptoms in the afternoons and in my arms. Enough was enough. Time for the opioid rigamaroll. I was alarmed ("What?! Drugs?!") and suggested I try Requip first. He set me straight.

[Dr. Grammy]

I keep wondering if my need to gradually start taking Requip around the clock reflects augmentation.

I'm wondering if I might be able to take an opioid only at night, or if needing Requip 24/7 (in ever-increasing doses) would mean I'd need an opioid 24/7 (in ever-increasing doses).

[Polar Bear]

It could reflect augmentation, or it could be a general worsening of the condition, or it could just be a patch where it is a little bit more severe and will settle again.

The difficulty for all of us is that we are never sure which it is, which isn't much help.

If it is a general worsening of the condition then it would mean medication more often even if it is an opioid.

If it is augmentation then there is the need to come off the requip which will probably need to be done with the help of your doctor as you would need stronger medication (opioid ?) to deal with the withdrawal until the symptoms settle to a base level, when the opioid may be able to be reduced accordingly.

If it is a bad patch that will settle then an occasional extra requip may help or if your doctor will give you a 'supply' of a stronger painkiller to use on such an occasion.

At present it doesn't sound like an opioid just at night would be the answer. It would last long enough.

Have you already increased your requip.
However, my understanding is that you have already increased your requip and if this is so, and your symptoms keep getting worse, it sounds like augmentation to me.

I supplement my requip 24/7, lower doses in the morning increasing during the day, with tramadol 200mg spread over lunchtime to bedtime. This has been working (more or less).

[ViewsAskew]

The generally accepted way to determine augmentation is that is happens quickly. So, let's say you've been on Requip 3 years and you need an increase. That's most likely the condition itself worsening.

But, three months later, you need another increase. And, then 2 months later, yet another.

That is most likely augmentation.

[Dr. Grammy]

I'm probably having augmentation on the Requip, then. The symptoms have been increasing steadily ever since I started it--first I needed meds just at night, when a daytime dose, then another and another. I never used to wake up at 4am with full-body jerks; now I do.

I remain concerned about opioids. They seem to come in many varieties. I tried percocet years ago (twice) after dental procedures, and felt so peculiar I swore off it forever. I must find something that addresses the RLS but lets me stay focused and be creative... not drugged-feeling and woozy.

[ViewsAskew]

For most people, as I understand it, opioids initially can make you feel odd - woozy, etc. I think most of us acclimate relatively quickly. It's possible some people never do, but a pharmacist or doctor would know better.

When taking Requip or Mirapex or Sinemet, the rule is that if the worsened symptoms occur withint 2 years of starting, then it's most likely augmentation.

And, from my experience, when the whole body jerks start, it's definitely augmentation! Thankfully those stopped within a few weeks after stopping Mirapex.

After taking time off from Mirapex, I was able to go back to it, just not every day. If I used it daily, I'd augment again (only takes about 2 weeks, unfortunately). But, I can use it 3-4 days a week without issue. I take opioids the other days. Alternating them allows me to stay as clear-headed as possible, something I am not if I take opioids daily for long periods. It might be that there is a similar solution for you.

I also do not drugs 24/7 any longer. Once the augmentation stopped, I still had mild RLS/WED during the day, but not enough to need to treat. Some stretching or walking does fine.

[Dr. Grammy]

Fascinating! This really seems to fit what I'm going through. When I can get a new appt with my neurologist, I'll ask about opioids.

A related question: I recently talked my PCP into prescribing Synthroid, since my TSH was mildly elevated. As you know, I'm taking Requip 24/7 and getting major myoclonic jerks if I'm 1) a little slow to take the next dose or 2) probably augmenting and needing the next dose earlier and earlier.

How on earth will I be able to tell if the Synthroid is reducing the RLS, while I'm taking RLS meds, when going off them increases my symptoms (because of characteristics of the meds)?

[Chipmunk]

I would think that if the Synthroid were helping then you would not see your symptoms worsen when you lessened the dose of the other.

Or, you would see symptoms get better while not reducing the RLS/WED med.

[ViewsAskew]

To add to what Tracy said, it's possible you won't be able to tease it out at this time, either. The interactions between meds and on other issues can be very difficult to figure out.