Restless Legs Syndrome (RLS) Discussion Board

I recently went to a Neurologist who said he had experience with the treatment of RLS. Not so much. The only good thing that came out of this visit was the suggestion of Sinemet. It is used to treat patients with Parkinsons.

Has anyone tried this treatment before and what has been your experience?

Thanks again,
Drumin4Him

Hi drumin and welcome to this board. I have never used sinemet but know that other members have and will respond to your post. Sorry that you have rls, but am glad that you have found this group. It is a wonderful and supportive group.

This forum that you are on there is a sticky post called "Managing RLS" and 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 give a copy to your a dr.

Another good site to read is www.rlshelp.org

How long have you had rls? Also have you had your ferritin level (iron deficiency) checked? If not you have to request that as it is not included in your normal b/w.

I see that you are from Michigan. Where in Michigan as I used to live in Detroit, Michigan; however moved from there in 1964. I do go back now and then as I have two (2) sisters that live there. One is in Westland and the other is in Dearborn Hts.

Again welcome and please keep us posted on how you are doing.

I haven't used Sinemet but my understanding is that it is only for intermittent rls. That it, once or twice a week.

Others will be able to speakwith better kowledge than me.

This is copied/pasted from www.rlshelp.org. Under the listing of Parkinson meds. You will find lots of great info about all the Parkinson meds that are used to treat RLS and there are MANY..
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Sinemet (Carbidopa/LevoDopa)
This medication has 2 components; LevoDopa (L-Dopa), the active Parkinson's medication (this is a precursor drug and turns into dopamine in the brain), and Carbidopa, an inhibitor of the enzyme (decarboxylase) which inactivates L-Dopa. The short acting form of this medication comes in 3 strengths: 25-100, 10-100, and 25-250. The first number indicates the amount of Carbidopa and the second number is the amount of L-Dopa in the pill. The Sinemet pill most often used for RLS is the 25-100.

Sinemet can be started at half a pill (25-100) 30-60 minutes before bedtime. It can be increased to about 3 tablets before bedtime, and will last about 3-4 hours. For early morning awakenings, another half to one pill can be added to help finish the night's sleep. Keep the nighttime total dose to a maximum of 3 pills. The medication generally works better for nighttime RLS than on daytime RLS symptoms.

Sinemet also comes in a sustained release long acting formulation called Sinemet CR, in both 25-100 and 50-200 strengths. This slow release tablet comes to peak action in two hours, so it is often combined with a short acting Sinemet to get relief within 30 minutes. Sinemet CR can be used in the morning also (in patients who get daytime benefit from this medication) for sustained daytime relief.

The main side effects of Sinemet include nausea, mental effects (confusion, hallucinations, dizziness), and dyskinesia (abnormal involuntary movements which occur with long term usage). The nausea can be avoided often if the medication is taken with food (this can however delay absorption of the drug). Dyskinesias are the most common serious side effect to occur in Parkinson's disease patients taking this drug, but occurs rarely in RLS patients. Periodic monitoring of CBC, hepatic and renal function is suggested.

Two main problems for patients with RLS using Sinemet are rebound and augmentation. Rebound occurs as the drug's action is wearing off with the symptoms coming back even worse than they were before treatment. Augmentation is an increase in RLS problems in general, not just as the drug's effects are wearing off and is the most common reason for discontinuing Sinemet. With augmentation, the intensity of the RLS symptoms can increase, can onset earlier and even spread to the upper limbs. Raising the dose of Sinemet may temporarily help the augmentation symptoms, but in a short while the increased dose just leads to further augmentation. Keeping the Sinemet 25-100 dose at no more than 2-3 tablets per day reduce the chances of getting augmentation (it is rarely seen with 1-2 tablets). Augmentation occurs more readily when RLS symptoms are present before 6:00 p.m. (off therapy).

Sinemet CR generally prevents the rebound problem but does not avoid augmentation. The augmentation effect of worsening RLS symptoms lasts for several days after discontinuing the medication. Mirapex or Requip (see below) can be used to treat Sinemet augmentation by giving one of the lowest strength tablets at bedtime, then adding another tablet every 2 days to that dose if needed. The Sinemet can be discontinued abruptly (especially at the lower doses), but may cause an increase in RLS symptoms for a few days as noted above. Mirapex or Requip (as above) will prevent some of this, or the Sinemet can be tapered off over several days.

NOTE: Due to the problems of augmentation which may occur in 50-80% of patients, Sinemet is likely better for mild intermittent cases of RLS, in which the dose of medication can be kept low enough or on an intermittent basis to avoid these side effects. Another use might be in cases where the other medications do not last through the night, a dose of Sinemet CR added to the other Parkinson's disease drugs at bedtime (and only at that time) may provide all night relief from RLS. Now that there are other better Parkinson's disease drugs available, Sinemet should not be used for RLS (except by RLS specialists who are very well versed with the problems with this drug).


PLEASE start to read and educate yourself about all the info about RLS, there is so much to learn and it seems that most Drs know very very little about RLS, so read all the Sticky post on this site and then study all the RLS web sites such as
www.rls.org
www.rlshelp.org
www.wemove.org
Plus many more sites, just type in Restless legs into google and you will find LOTS and lots of very helpful info.

Hi

I'm on 25 mgs of sinemet. I can't go any higher or the side effects are brutal

Hi,

Back home now from Florida and wanting to be back there. The very first med I was put on was sinemet and all I remember is the rebound and augmentation. I couldn't take it at all and was later put on parlodel and that worked until I had back surgery. Now I take neurontin and mirapex. Good luck, Jeannie/stitch

Hi

0ver here in UK they are using meds for Parkinsons Disease,
im going back to doc but she is off next week so it will be
probably next week im going to try one not sure which one
she will give me, but, I have had enough. Im limited to
what esle I can have.

Will keep you guys informed.

gill

Hello everyone! Sorry I have not responded to all of your comments. I have been very busy with work and graduations....life in general I guess. I'm going to get my blood work done on Tuesday AM (to check my iron level) for a physical on Thursday. It is my family Doctor this time. He seems to be a bit more informed about RLS than the Neurologist. I have several questions that I plan on asking to help me decide to try Sinemt or not. Anyway, fyi I had an earlier posting titled "Life in General and Driving with RLS" please take a moment to read it as it explains my history and how RLS affects me.

Thanks again for all of your responses.

Drumin4Him

Just make sure when they test your iron, they test specifically for ferritin levels. There are several different iron tests--three, I think--but it's ferritin, which is an indicator of stored iron, that matters to us.

Good luck.

d4, Chiming in a bit late but still chiming in. Anyway, Sinemet was one of the first daily meds prescribed for my rls. Had a nice run of about 2 years with it. My symptoms were well controlled with virtually no side effects. Still use it on occasion for the theatre, long car trip, etc. Best of luck.

M.

d4,
It just goes to show that everyone is different. Some people do very well on Sinemet, yet I couldn't take it even for a week or so. So I guess the best way is to try it and see how it works for you.

But remember what we all say, what works for you doesn't have to work for me and what works for me doesn't work for you. Good luck d4. Jeannie

i take sinement....but i only take it about 3 times a week....sinement has a high augment rate.....so far no augmenting...but the jumpy muscles are getting worse in my legs.....

dee

Well I had my Dr. visit today along with a complete physical. Praise the Lord all of my numbers were in the "good" range. This is good news but also a bit frustrating. I guess I was hoping to have a low feritin level...my number is 114.5, well withing the acceptable range.

RLS is fairly new to my family doctor but he is willing to learn. I left him the algorithim from the Mayo Clinic along with some other literature from this site.

He listened and suggested that I try Mirapex next before going to Sinemet. I took my first dose this evening. I'll document my episodes and see if there is a change in frequency and severity. I suffer badly from augmentation and rebound with Requip.

Thanks to all for your support. I will keep you updated as time permits.

CTRAVEL======= I live near Spring Lake Mi. I have suffered with RLS since my teenage years.

Drumin thanks for the update. I know that my ferritin level is 50 and my neurologist wants it to be between 100-150 so yours does not look out of range but of course I am not a dr.

I am also on Mirapex and so far it is doing good. I now and then have symptoms but am sure that is normal. I also took Requip and like you augmented really bad two years.

Please keep us posted and thanks for your comment on where you live in Michigan.

Drumin, this may or may not apply, so take it as intended: food for thought.

Severe augmentation is tough. I am not sure, but I think I read that sinemet is not considered an option - ever - for someone who severely augmented.

I was given it after severely augmenting from Mirapex. On one dose, I had constant, non-stop RLS for 36 hours - no sleep at all. Of course, that's just me and that may not happen at all to someone else. Just keep it in mind that it is a possibility. If it happens, at least you won't freak out (like I did).

To anyone in your situation, I would highly recommend that the patient (in this case, you) and/or the doctor purchase the new book by Hening, Buchfurer, and Lee, called "Clinical Management of Restless Legs Syndrome" available at a discount at www.rlshelp.org or through Amazon, Borders, Barnes and Noble, etc.

I just got it out and it says, "When RLS continues to worsen despite an escalation in the dopamine agonist dose, it is time to stop the medication and change therapy. Typically, medium to high potency opioids can be used to treat the marked exacerbation of RLS symptoms that occurs upon withdrawal of the drug. After several weeks, another dopamine agonist can be substituted and kept at a low dose...If augmentation recurs with the new dopamine agonist, other treatment as outlined above and in figure 10.3 is indicated."

Figure 10/3 shows a specific algorithm for the treatment in difficult cases.

This should guide you and the doctor through your treatment, I would think. And help both of you feel that your choices are good choices, based on the knowledge of many qualified experts in the RLS community.