Patient letters on RLS symptoms and remedies- Page 77

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Sent: Wednesday, September 19, 2007 2:00 PM
Subject: RLS

I am 45 year old and have had RLS since many years ago. It has been a main problem for me since 8 years ago. I have been on Mirapex 0.25 - 0.50 mg and also Citalopram 20 mg for two years. I started Requip 0.5 mg from 3 days ago but my symptoms has been aggravated after awakening from the sleep and also at evening.

Is it any possibility for developing Tardive Dyskinesia or something like that in the patients with RLS that are on dopamine agonists for years?

Maryam

Medical Reply

Citalopram usually worsens RLS so that may be part of your problem. Wellbutrin (bupropion) is the only really good antidepressant that is RLS friendly.

Requip and Mirapex are both very good drugs. Some patients do better with one, some with the other but most do well with both. It really depends upon the individual person and much less so on the characteristics of each drug.

Tardive dyskinesia occurs only when dopamine agonists are used for Parkinson's disease patients. It has not been reported yet to occur in RLS patients.

Sent: Thursday, September 20, 2007 12:34 PM
Subject: Changing Mirapex to Requip?

I have been taking Mirapex for RLS for more than four years beginning with .375 mg daily. I am currently taking .75 mg daily. Augmentation became a problem last year, and my doctor prescribed Requip (.25 mg three times daily). I was unable to sleep for three days and nights. My doctor then discontinued the Requip and increased my Mirapex from .500 mg to .625 mg daily, and there was was good improvement, but augmentation gradually returned.

My Mirapex dosage is now increased to .75 mg daily with limited relief. I would like to try Requip again at a dosage of more than .75 mg daily. Is there a recommended Requip dosage for patients changing from Mirapex to Requip?

Sara B.

Medical Reply

Requip tends to be 1/2 to 1/4 as potent as Mirapex (on a mg to mg comparison basis). Therefore, you would need1.5 to 3 mg of Requip to replace your current dose of Mirapex .75 mg.

However, there is another issue here that is even more important. Once you have augmentation at this severe level, it is much better to discontinue the offending dopamine drug and not replace it with another in the same class.

You should go on an opioid (methadone, oxycodone but hydrocodone may also do) for a few weeks. At that time you may be able to add a low dose of Requip (it is thought that the higher doses of dopamine agonists lead more readily to augmentation) and decrease your opioids. There is also a reasonable likelihood that even with smaller doses of Requip, your augmentation problems may return.

To completely discontinue the opioids, you may have to add another drug such as gabapentin or Lyrica.

Sent: Friday, September 21, 2007 8:19 PM
Subject: Buspar for RLS?

I do take Buspar for RLS and it has worked for me so far.

Laurie L.

Medical Reply

Buspar generally should not help or hinder RLS. But, every person can respond differently so anything is possible.

Sent: Sunday, September 23, 2007 6:00 PM
Subject: Definition of reuptake blocking?

What does blocking the reuptake of two different neurotransmitters in the brain, norepinephrine and serotonin mean? Does this mean it enhances the activity of these or lessens them. I'm asking this in regard to your explanation of Ultram (tramadol).

Shirley T.

Medical Reply

By blocking the reuptake of the brain chemicals (which are metabolized and thus destroyed when they are taken back up by the nerves in the brain), tramadol is making these chemicals more available to keep acting on the receptors in the brain. This in effect, increases the activity of these chemicals in the brain.

Sent: Monday, September 24, 2007 1:21 PM
Subject: RLS and medications?

I take steroids, albuterol Inhaler, albuterol from nebulae, 100 mg. Prozac, nortriptyline 50 mg, clonazepam 5 mg a day. I am 59 years old have recovered twice from Acute Respiratory Distress Syndrome. I also take amlodipine 5 mg for high blood pressure, take Actonel once a week and Requip for RLS. It seems the older I get the worse the RLS gets.

Requip really helps but I take it twice a day, I have bouts of RLS during the day. I was wondering if I could cut back on my Prozac would that help lessen RLS. problem. I also heard that the drug company was going to make Requip that would last for 12 hrs. Have you heard this and if so is it on the market yet. I have been having some problems with nausea since I started taking Requip and Actonel. They both can cause nausea.

I cannot stop taking Requip, will my body adjust to this side affect after it is on the drug awhile. I need help with adjusting my meds. I am also on oxygen 24/7. But I have to say the Requip really helps my RLS.

Kathleen

Medical Reply

The Prozac could certainly be worsening your RLS. If Wellbutrin helps your depression/anxiety problems, then it would be a better choice.

Requip CR will most likely be available sometime next year. It lasts 14 hours so might help your RLS situation. The nausea usually diminishes with time (for most users) so it may pay to hang in there. Taking Requip with food may also help decrease the nausea considerably but does delay its onset by 30-60 minutes (so take it a little earlier if you take it with food).

Sent: Tuesday, September 25, 2007 8:53 AM
Subject: My RLS story

I was diagnosed with RLS approx. 3 years ago. My dr. first gave me Norco 10mg/350 and it worked like a charm. I started out with 1 pill at night and .5 two times per day (by the time I saw the doctor, I was having symptoms during the day).

RLS works for me like a raging monster. If I don't take medicine soon enough, it gets worse and worse, the longer I go, the more medicine it takes to get rid of it. I have electric like shocks in my legs and burning in my upper arms.

I took Norco for a year (trying clonazepam as well didn't work) progressing to 7 per day, so my doctor sent me to a neurologist who had me try Requip. When I attempted to get to a dosage that worked, I would throw up. I was then sent to OHSU to see a specialist. It was determined that the clonazepam type drugs, and the Requip/Mirapex won't work for me, so i was told I could use Norco long term. Over the course of another year, my dr. sent me back to OHSU and wanted them to see me as a patient, they refused. He was getting nervous about prescribing me opioids. Soon after he refused to see me as a patient and told me to find someone else.

I then went to a sleep specialist at my local hospital. He continued to prescribe opioids, but tried garbapentin, which didn't help. We then went back to the opioids.....I have taken 8 per day for over a year. We added MS Contin a few months ago (2 per night) which was the first time I slept through the night.

I have had a great 3 months, sleeping through the night except, the week prior to my period when my RLS is most relentless. The medicine doesn't work much during that time and the symptoms stay with me all day, even with medicine. I currently take 2 at a time 4 times per day, with the 2 MS Contin at night.

Last week, everything went out of control. Recently I had my IUD removed and started taking birth control pills. I really believe this is somehow hormone related. I am not sleeping through the night, the symptoms aren't relieved and I have been miserable. What can I do now? I have a total fear that my dr. will drop me again and am afraid to tell him that it sometimes takes 3 Norco to relieve my symptoms at night and that I often run out of medicine before my refills because of this. I am miserable and afraid.

I work full time and almost lost my job when I first was dealing with this because of the lack of sleep I was getting...I'm just trying to remain productive. I am also a mother of 3 and can NOT be miserable all the time and still be a good mom. The only other thing that helps slightly is a heating pad??

Please help....
Kelly H.

Medical Reply

You clearly have a severe case of RLS that is difficult to treat due to your lack of response to drugs other than the opioids. Most RLS patients in your situation do well with low doses of opioids and usually do well indefinitely without experiencing a need to escalate their dose (as in your case).

The big concern is that you are getting close (if not already there) to an opioid dose level that causes tolerance and dependence. At this point, increasing your dose will likely only result in temporary relief then tolerance to the higher dose.

It is difficult to suggest exactly what to do as no solution is without problems. You should probably go off the opioids for a couple of weeks (they will likely be incredibly tough weeks) to reset your opioid receptors. At that point, starting an opioid like methadone (which works better for RLS for most patients and may cause less problems with tolerance/dependence) and keeping it at a relatively low dose (maximum of 30 mg per day) may be helpful.

You may also try other anticonvulsants (such as Lyrica) which may not do much on their own but when added to an opioid may produce a better response and allow you to decrease the opioid dose.

Many RLS sufferers do find that hormones influence their symptoms but interesting enough, others do not notice this problem.

Sent: Wednesday, September 26, 2007 4:19 PM
Subject: RLS questions

I'm a 33 year old man, who first experienced what I now know to be RLS around when I was 27. It would come and go, and no analysis of my food or exercize patterns clearly demonstrated any causal relations to what I was doing and what was happening with my legs at night. Starting about a month ago, I began having the worst episode ever. Not only did I have all the usual "crawlies" and continuous need to move my lower legs, I had a couple nights of what developed into downright pain -- under the skin of my soles, all the way up to just below my knees (all on the rear of my legs -- general restlessness affected all my lower legs, but pain was isolated to the rear). The mental image I had at the time was of some sort of small animals trying to break out of my legs. It became so awful that my father, an anesthesiologist, had to come over and perform some complex sedation just to get me past this episode so I could eventually reach some natural sleep.

During past episodes and the present episode, I have gone through just about all the listed dopaminergic drugs, all with the same result -- I would get to sleep easily for a couple days, then the medicine would rapidly lose effectiveness even with dosage increase, only leaving me more exhausted the next day. I'm interested in Gabapentin, but because of its present price in the USA, frankly until it's generic it's not going to be on the top of my list.

With the assistance of my MD father, I have been looking at opiates with the least addictive potential. In addition to obeying the highest discipline to avoid improper opiate use, what do you think of the effectiveness of intra-nasal Stadol, given its mildness and ceiling effect? Would I be better off with a benzodiazepine, or Tramadol for that matter?

Obviously I can't do that sort of thing every night, but so far, this present episode has not fully subsided. I started binding my lower legs using the extremely tight "gold tip" socks used for men with varicose veins (I have to buy some ace bandages tomorrow), and such compression on my legs helped a bit...still felt the need to move, but it was diminished from the previous night. To test if it was the binding or just a cyclical diminishment of the RLS, I removed the socks for an hour, and symptoms slowly increased in intensity. The socks went back on quickly after that.

So, now to questions -- how frequently is RLS a cyclical event in people? How frequently do RLS sufferers experience an increase in the unpleasant aspects of this rather unusual disorder, as time passes? Does RLS ever diminish over the years, and if so, does anyone know why, or even have a working theory?

Next, regarding my treatment -- I am a bit paranoid about getting addicted to anything. Is there any evidence that a combination of leg binding, a TENS or similar electro-stimulus unit, and lower-leg specific exercise and stretching is statistically significant as relief for RLS sufferers? Should I bother with that attempt (which would mean the investment in, or at least a month rental of, a TENS unit, which isn't that cheap)? Or should I bite the bullet and see a more specialized physician? If the latter, would it be better to see a neurologist, internist, or other specialist? Is there any listing of physicians with RLS treatment experience?

Ken K.

Medical Reply

Gabapentin is a generic medication (brand name is Neurontin) but it may still be reasonably expensive. Other anti-seizure medications (such as Lyrica) may also be helpful but do not have generic forms yet available.

It does sound as if your best bet would be an anti-seizure medication and/or pain killer. Ultram (tramadol) is often a very good choice if it works for your RLS symptoms. Otherwise, low doses of opioids (which ever one works and of course at the lowest possible dose) can be very effective and extremely safe even when used on a daily basis as long as the dose is kept reasonably low (and monitored closely to make sure that no unusual dose escalation is occurring). Stadol (butorphanol ) is not used very much for outpatient pain relief and is likely not that useful for RLS as it is a partial agonist and antagonist of the opioid receptors and it has a very short duration of action (about 4 hours compared to 6-10 hours for other opioids such as methadone which is one of my favorite ones).

RLS may vary considerably with time, waxing and waning similar to other chronic problems such as back pain. Unfortunately, with time (years to decades), most RLS sufferers tend to get worse (although a very few may have complete remissions for no good reason).

Mechanical methods (other than compression of the legs with wraps, stockings, etc. which seem to work for may RLS sufferers) do not seem to help most RLS patients. There have actually been some studies showing that TENS units, other compression techniques, biofeedback, etc. do not really help most RLS patients. Benzodiazepines help RLS patients sleep but usually to not help with RLS symptoms.

Neurologists (especially movement disorder specialists), sleep specialists and some internists may have enough expertise to help you. However, you should first check to see if they treat a lot of RLS patients and have enough experience with tough RLS patients. There is a list of doctors on the RLS Foundation's website who state that they treat RLS but there is no way to verify their actual expertise. You can also do an internet search for experts who have published on RLS which may markedly increase your chances of finding a doctor in your area who has the expertise to treat your RLS.

A Reply from Ken K.

Sent: Thursday, September 27, 2007 12:23 AM
Subject: Re: RLS questions

Thank you very much for your assistance, and I will definitely be purchasing your book shortly. Fortunately, my father can prescribe tramadol, propranolol, and gabapentin, though no scheduled medicines. I just ended my previous medical insurance and have just applied for better coverage (for the moment all I have is just enough coverage to help with accidents, spontaneous combustion, or what not, not doctor visits). I'm also about a week from leaving on vacation...how's that for luck, getting my worst RLS episode just before leaving on a vacation...but it's not all bad, where I'm going has low-moderate (20mg or so) dose codeine available OTC, so I'll probably do OK, but I'll be eager to hunt down a specialist when I return.

I hope you don't mind one last question: the information on Gabapentin leaves me with a bit of confusion -- is it used symptomatically, or as daily ongoing therapy?

Ken K.

Medical Reply

Gabapentin takes about 1-3 hours to kick in so it should be taken well before symptoms occur. Once symptoms are active, it is likely that gabapentin (unlike opioids) will do little to make you feel better. Therefore, it should be used regularly.

Sent: Friday, September 28, 2007 9:21 PM
Subject: Mirapex for RLS?

I have been on Mirapex for almost 10 years now for my RLS. Is there any major side effects from taking Mirapex for a long period of time? I do have insomnia and it seems like my back aches a lot when I try to sleep! And when I wake up in the morning I have such a backache! Can taking Mirapex for this long of a time cause these other aches and pains? Am I safe being on Mirapex for this long?

Do I need to try something else or should I stay with what works for me now until the RLS gets worse??? Can I still increase the Mirapex when my RLS gets worse! I take .5mg 3 times a day right now!! I worry about the side effects on my liver and kidneys?? Other major organs with being on this medication for so long! Any answers for me??

Thank you! I sure would appreciate some answers to help me relive some stress regarding taking the Mirapex!
Cheri

Medical Reply

The long term use of Mirapex as this point seems very favorable. There are no known long term problems documented with using dopamine drugs fro RLS (which is not true when these drugs are used for Parkinson's disease). It is very unlikely that your current aches and pains and insomnia problems are due to Mirapex. They are more probably due to other reasons or just part of getting older. When drugs cause problems they usually do so within the first few weeks or months.

If your RLS does get worse over time (as is the case with many RLS sufferers), you may need to increase your dose (hopefully just a little at a time). However, your dose is starting to get to the higher levels used for RLS so adding an anticonvulsant or painkiller in the future may be very reasonable options.

Sent: Saturday, September 29, 2007 12:02 AM
Subject: RLS worse after hip surgery?

I have written to you several times but I am still having a lot of problems. I am 80 years old and have had RLS for about 15 years or longer. I had a hip replacement about a month ago and I am now having RLS every night - some nights I am walking all night. It seems like my leg tenses up and it affects the whole leg - the one I had replaced. I am taking 2mg of Requip a day along with 3-300mg of Neurontin. Just recently added oxycodone hoping that would help.

My doctor works with me. This is not helping. I am also bothered during the daytime too. Once in awhile I have a day with no RLS. I am taking the 2mg of Requip 3 times a day along with the Neurontin 3 times a day and oxycodone once a day before bed. What am I doing wrong? I hope you have some suggestions as I am really getting desperate with so many sleepless nights.

Betty H.

Medical Reply

It is likely that you are not doing anything wrong. If you have increased your Requip dose in the past year so, you may be getting augmentation from the Requip. If that is the case, then stopping it for a few weeks then perhaps changing to a low dose of Mirapex may be helpful.

Otherwise, it may be that the hip surgery may have triggered worsening RLS. This phenomenon is not understood at all but does seem to occur fairly often. If that is the case, then you will need a higher dose of oxycodone (you do not say what dose you are currently taking) and you may need it up to three times daily (if the RLS bothers you enough to warrant additional treatment during the daytime).

Sent: Saturday, September 29, 2007 6:32 PM
Subject: Neupro for RLS?

If neither Mirapex or Requip touched my RLS and only gave me unpleasant side effects is there any reason for me to try Neupro? I have been taking Ultram/Vicodin with great success but would prefer a non-narcotic. I have tried all the other drugs you discuss and found the narcotics to be the only thing that worked. Should I ask you Doctor to try Neupro?

Devi

Medical Reply

If you did not respond to Mirapex or Requip it is very unlikely that you will respond to Neupro. Due to its slow transdermal release you may have fewer or milder side effects but I doubt the risk of these side effects is worth the very limited chance of any benefit you may receive.

Sent: Sunday, September 30, 2007 6:36 AM
Subject: RLS medications

I have been on the following medications as listed below:

Sinemet CR 25/100 mg at bedtime Great relief, however after approximately. 6 months the augmentation effect was just terrible. I was not able to sit down from about 3:00 p.m. on. Would stand at the kitchen counter in order to read.

Clonazepam .5 mg at bedtime. My doctor switched me to this after Sinemet. Tried for a short time...did not help much and I was concerned about possibility of addiction.

Neurontin 3 x 100 mg. at bedtime. Helped for a little while and now does absolutely nothing.

In desperation one night, I took 1/2 of a Sinemet... it could have been as little as 1/3. I was able to sleep for 5 hours which is a miracle. I am continuing to take 1/3 to 1/2 of a Sinemet with the hope that the augmentation problem will not reoccur. It is the only thing that seems to help. Last night I slept for 7 hours!!! I think that I read somewhere that the Sinemet tablet is not supposed to be cut in half. Can you tell me why and what the danger would be in doing this? I have being doing this for about a week now.

I will see my family doctor in early November. If the partial Sinemet tablet is a problem or if augmentation reoccurs have you any other suggestions? We live in a rural area and the idea that I could fall asleep while driving with Requip Mirapex is a real concern.

Lynne B.

Medical Reply

I am assuming (possibly incorrectly as your dose of Sinemet CR is not correct) that your dose of Sinemet is 25/100 mg (it also comes in a 50/200). If so, then the "safe" dose is considered to be less than 2 tablets per day before augmentation becomes very likely. However, many RLS patients may develop augmentation with even smaller doses, such as seems to be your case. The lower doses you are taking may be safe but only time will tell. It should be fine to use the 1/2 pill doses of Sinemet CR as the tablet is scored (but you should check with your pharmacist).

Although a very small minority of patients may develop daytime sleepiness problems with Mirapex and Requip, that is a much more common problem with the higher doses used for Parkinson's disease. My best suggestion is to try Mirapex or Requip and see how it works. It is likely that a low dose will relieve all your symptoms and not cause any problems which is why these are the drugs of choice for RLS (and the only two drugs FDA approved for RLS).

If the dopamine agonists, Requip and Mirapex do not work for you (and you don't stay on the low doses Sinemet CR), then a low dose of a painkiller (opioid or tramadol) should be very effective and safe for your RLS.

Sent: Tuesday, October 02, 2007 10:40 AM
Subject: Are these leg jerks PLMW?

My symptoms seem to fall outside the usual RLS or PLM categories. I've been dealing with major sleep loss for 10+ years from involuntary leg jerking. Some med combos and rotation have been helpful. I posted one other time (8/23/06). I don't have uncomfortable sensations, move my legs deliberately, or have movements while asleep as I have had a normal PSG (overnight sleep study). It¹s been hard to describe to doctors, so I video¹d it. It's posted online at www.youtube.com/watch?v=bsw7LlEXwyY

Have you ever seen this before? Any diagnostic input would be helpful.
Erik S.

Medical Reply

The jerking movements do look somewhat like PLMW (however, even the video can be misleading) but it is very unusual to have these without PLMS. You should see a neurologist (a movement disorder specialist would be the best choice) who should be able to study this during the daytime (unlike PLMS that needs a PSG) and determine the nature of your problem.

Sent: Tuesday, October 02, 2007 6:42 PM
Subject: Requip and edema?

Over a year ago my 83 year-old mother’s case of RLS turned into severe RLS and PLMD which afflicts her both day and night. She finally got it under control using three mg of Requip – one mg during the day, and two mg of Requip plus one Sinemet at night. Several months ago her ankles, feet and legs began swelling. Doctors checked her heart, arteries and other kinds of potential causes of edema and have found her otherwise healthy.

As her legs continued to swell to dangerous levels, we began thinking of other causes such as medication. Requip seemed to be a possible source of her trouble and she has stopped taking it, but is struggling to control her RLS/PLMD. Mirapex and Neurontin have been largely ineffective. She is currently taking 7.5 mg of methadone (2.5 mg three times a day), but her RLS still breaks through both day and night.

Her primary care physician is working hard to help her, but is hesitant to increase the methadone because of its effect on people her age. I hate to see her suffer. Do you have any suggestions for her doctor?

Jan W.

Medical Reply

Dopamine agonists, such as Requip have been known to cause edema. What may be helpful at this point would be to restart the Requip but a lower dose. Added to her other medications, the lower dose of Requip may take care of the residual RLS but hopefully not cause the edema. If this does not work, then perhaps adding a very small dose (even starting as low as 1/2 of a .125 mg tablet) of Mirapex may be helpful.

If the dopamine agonists are not tolerated, then another choice would be low doses of the anticonvulsants (gabapentin, Lyrica, etc.).

Sent: Wednesday, October 03, 2007 3:59 AM
Subject: RLS

I am suffering from RLS for the past 1 year, initially I consulted a doctor , he suggested Sinemet . This was working well for 6 months, again I meet a doctor who suggested ropinirole (Requip) which is approved by FDA. I was talking this for the past 5 months (1mg to 0.5 mg), this is working very well.

How long I should take the Requip?
Manick

Medical Reply

As RLS tends to be a life-long condition, it is likely that you will need the medication indefinitely. Sinemet does work well initially but then usually worsens RLS (called augmentation).

A Reply from Manick

Sent: Tuesday, October 16, 2007 10:10 PM
Subject: RLS & Requip

What is the maximum safe recommended dosage of Requip?.

Manick

Medical Reply

The maximum dose approved for RLS (based on the studies done by GSK for obtaining FDA approval) is 4 mg in one dose before bedtime. However, most patients do very well with 2 mg or less per dose. For severe RLS patients, we may dose up to three times daily.

Sent: Wednesday, October 03, 2007 12:26 PM
Subject: RLS treatment and pregnancy?

I have been diagnosed with RLS since I was a toddler, it runs in my family. I am taking 2 mg of Requip daily and it usually helps, but I do have breakthrough RLS through out the day. I am trying to get pregnant so I have stopped taking the Requip and I am about to go crazy. My RLS is so bad I don't sleep at all, and I am now easily dazed and confused. I think it is because of the lack of sleep, but could it be withdrawal from the Requip? If so can you suggest anything to help.

What is safe to take while you are pregnant for RLS?
Gaile S.

Medical Reply

The worsening of your RLS is most likely due mostly to just not being on the Requip (now that you are more used to having your RLS more or less under control). Any worsening of RLS directly related to stopping Requip would last only for 1-2 weeks.

Pregnant women are very hard to treat for RLS. There are only a few effective and somewhat safe drugs during pregnancy. The best two drugs are oxycodone and methadone (my choice) in low dose. Although they have never been studied for use in pregnant RLS patients, there is lots of experience with methadone in pregnancy (women who are methadone for maintenance of heroin addiction at much, much higher doses than are used by RLS patients).

Sent: Wednesday, October 03, 2007 11:02 PM
Subject: ferritin levels and RLS

My 12 y.o. has RLS. Her neurologist said that he thought hers might be caused by low ferritin levels (long term iron levels, I think.) 2 years ago she was at 28 -- in the low, but normal range. However, after 100 days of iron and Vitamin C supplements to get her levels over 50, her symptoms pretty well went away.... until the past month.

We got her ferritin levels checked, and sure enough, they were down to 28 again! We're starting the supplements. We have Mirapex, but can't use it because she's on 4 other psych drugs for OCD.

Suzanne in CA

Medical Reply

Most people who have RLS have a family history of RLS and likely have a genetic cause of the disorder. Low iron levels (measured by low serum ferritin levels) will often trigger RLS. Drs. Allen and Early at Johns Hopkins University have found that treating with iron can markedly help most RLS sufferers especially if their ferritin levels are below 50.

What is very interesting is that unlike most people, RLS sufferers seem not able to hold on to their iron. Once iron/ferritin levels are brought back to normal for most people, iron levels do not decrease unless the person is losing blood (such as from a bleeding ulcer, heavy menstrual flow, etc.). RLS patients keep losing iron despite any demonstrable medical reason for this problem.

Mirapex and Requip, which are both approved for adult RLS have not yet been approved for children (under 18 years old). However, many experts use these drugs off label for children when necessary. Despite being on several drugs for OCD (most of these drugs worsen RLS), she could take Mirapex if necessary. Although cases of compulsive behavior have been reported with the higher doses used for Parkinson's disease, this phenomenon is very rare with the lower doses used for RLS. If clinically warranted and necessary, it may be worth a trial of Mirapex or Requip to see how she responds to this drug.

A Reply from Suzanne

Sent: Thursday, October 04, 2007 11:58 PM
Subject: Re: ferritin levels and RLS

We do have an outdated prescription for Mirapex. I gave it to her a couple of times and the combined effect with the Risperdal, Buspar, trazodone, and Prozac made her want to sleep most of the following day! I later read my notes and found that the neurologist said not to take Mirapex with anti-depressants. He's no longer available, but I'll check with the psych. doc. Interesting about the falling ferritin levels. Her levels did go right back to the 28 level they were at 2 years ago.

Suzanne in CA

Medical Reply

There is no particular reason (that I am aware of) not to mix Mirapex with antidepressants. In fact, this is commonly done in adults without any problems. If the Mirapex made her too sleepy, perhaps a smaller dose may work better or a change to Requip (which is less potent on a mg basis).

Sent: Thursday, October 04, 2007 10:22 AM
Subject: RLS

I have RLS I take carb/levo er 25/100 tab. It isn't working. I just wanted to know the long term affects. I have taken it about 1 year. I seem to have become hypoglycemic. Could the medicine have any thing to do with it?

Medical Reply

Most likely, the carb/levo (Sinemet) is not responsible for your hypoglycemia (low blood sugar) problems.

Although Sinemet is a good drug to use on an intermittent basis, it should not be used daily as it tends to worsen RLS (called augmentation).

Requip or Mirapex are the only two drugs approved for RLS and they are also the drugs of choice for this disorder. Ask your doctor to start you on one of these drugs.

Sent: Saturday, October 06, 2007 10:44 AM
Subject: Neupro transdermal system for RLS?

My neurologist has tried everything for my RLS. She is on top of the latest trial and error for RLS. I am very sensitive to medications and have had many side effect. I am now on NEUPRO (Rotigotine Transdermal System.) It is a patch that is replaced every 24 hours and in the Parkinson's disease family.
I use a 2 mg patch. This is the first time in at least thirty five years my RLS has totally disappeared!

I have only been on it for three weeks and what the future holds I don't know. At this time I feel like a different person, I can sleep and no drugged out feeling during the day. My neurologist has one other patient that is responding well to this medication.

Have you heard of anyone being on the patch?
Patty M.

Medical Reply

Neupro has been available (for Parkinson's disease) since July 2007. Those of us who treat a lot of RLS patients have already used it quite a bit for tougher RLS patients like you (ones who don't respond or tolerate the more traditional medications). There have been a couple of published studies using this drug for RLS and several ongoing trials which hopefully will lead to its FDA approval for use in RLS in the next few years.

Sent: Saturday, October 06, 2007 3:45 PM
Subject: Tingling in hands (fingers) as a side effect of Requip?

I started taking Requip a couple of months ago and it seems to help with the RLS. I’ve read a number of reports about a variety of side effects, some of which I have also noticed. However, I am also experiencing numbness and tingling in my hands, particularly my fingers, as well as a burning sensation on the pads on the palms of my hands, particularly while holding the steering wheel while driving.

I do have arthritis, which is most pronounced in my hands, but have not had the tingling, numbness or burning sensations before. Are they side effects from Requip?

Jo An L.

Medical Reply

Numbness, tingling and burning sensations are not typical side effects of Requip. Although anything is possible, I would look for other explanations for these new symptoms.

Sent: Tuesday, October 09, 2007 10:30 AM
Subject: Neupro patch for RLS?

I recently read the article about Rotigotine on the RLS Foundation's web site. I am very anxious to find out when this patch might be released for RLS treatment in the US.

I have very severe RLS and PLMD. I can live with the PLMD, but my RLS is making me crazy and keeps me awake. In the last two weeks, I've had 3 nights where I was unable to sleep at all. On the nights where that happens - I end up going 40+ hours with no sleep at all.

On the nights when I can't sleep - it makes me think terrible thoughts that I don't want to repeat. I dread seeing night come because I'm afraid it will be another sleepless night. I was on Permax for 15 to 18 years and with the removal from the market - my life has gone to hell. I tried Mirapex and was allergic to it. I'm now on 2 mg of Requip and it obviously does not work.

I am at my wits end and don't know where to turn. I'm very anxious to try this new patch. At this point - it seems it may be my only hope for a fairly normal life.

Sharon H.

Medical Reply

The Neupro (rotigotine) patch is currently available but only approved for Parkinson's disease. However, that does not mean that it cannot be prescribed off-label for RLS (similar to Permax which was never approved for RLS). You simply have to ask your doctor to prescribe the drug for you.

There are several other options for controlling your RLS. Anticonvulsants (Neurontin, Lyrica, etc.) and painkillers are very effective and safe when used appropriately for RLS.

Sent: Wednesday, October 10, 2007 7:18 AM
Subject: Herbs for RLS?

Are there any herbs that can worsen or cause symptoms of RLS. I am on a herb supplement and looking back the symptons seem to have gotten worse in these last 3 months I have been on it. There is no info on herbs that can make it worse- only what can help.

Sharon C.

Medical Reply

There are no studies on herbs that benefit or worsen RLS. We only have anecdotal reports that some herbs seem to help RLS but as far as we know, the entire benefit may actually be due to the placebo effect. My advice to you would be to seek out medication from your doctor that should easily control your RLS.

Sent: Friday, October 12, 2007 2:31 PM
Subject: Treating intermittent RLS?

My son is 29 years old and has developed RLS. I wanted him to see my neurologist (I have severe RLS) but they will not accept him as a patient until he has first seen the family doctor. The problem is our doctor doesn't know much about RLS and says he is too young to start him on medication. My son doesn't have it every night- he maybe will get it 2 days a week or maybe have it for 4 nights and then not have any trouble for 2 weeks. When he does get it, he is up the whole night.

What kind of medicine do you recommend for someone that doesn't get RLS every night. For people that develop RLS at this early age, does that indicate that their RLS will be more severe as they get older since it started at this early age?

Mary P.

Medical Reply

It is unfortunate that every family doctor cannot yet treat RLS with ease. Only the tough cases which have stymied the family doctor should be referred to a specialist which is why the neurologist wants a referral (so as not to see trivial cases that are better handled by general doctors and of course for billing purposes as they need a referring doctor's name to bill for a consultation). Intermittent cases of RLS are most often milder cases that are very easy to treat.

There are basically 3 choices for intermittent RLS symptoms that mainly occur at bedtime. The first is to take a sleeping pill such as one of the non-benzodiazepines (Ambien or Lunesta) which should enable him to sleep (RLS, similar to back pain does not exist while asleep) and should also be easily prescribed by his family doctor (who must be used to prescribing sleeping pills for any problem that causes insomnia).

The next choice would be a painkiller such as one of the low potency opioids (Darvon, 1/2 of a Vicodin) or tramadol when bothered by RLS symptoms. They usually onset within 10-15 minutes and are extremely safe when used intermittently.

The third choice would be Sinemet 25/100 with the onset of symptoms. Although we do not recommend this drug to be used on a daily basis (due to augmentation), it is an extremely effective, quick acting (within 15-30 minutes on an empty stomach) and safe medication when used on an intermittent basis.

Developing RLS at a younger age does not necessarily mean that he will get severe RLS when older. However, symptoms usually worsen over many decades in most.

Sent: Friday, October 12, 2007 5:57 PM
Subject: Requip side effects?

I have just been prescribed Requip .05mg for my restless leg problem. I am currently taking one Citalopram Tab 20mg a day. After reading about the side effects, I am afraid to take the Requip tab.

Should I try something else?

Linda C.

Medical Reply

Requip is a very safe drug for RLS. If you read the package insert of almost any drug, you probably would take nothing (including aspirin!). A very small minority of patients do get side effects, but that is very similar to most other drugs, such as citalopram.

The citalopram (Celexa) is known to worsen RLS. It is quite possible that off this medication you may not even need any treatment for RLS. However, I would not stop the medication if you need it to treat significant depression or anxiety and cannot tolerate or benefit from the RLS friendly alternative, Wellbutrin.

Sent: Sunday, October 14, 2007 7:01 AM
Subject: RLS

I am a 46 year old female with RLS. I have had symptoms for 15 years. My primary problems were during the hotter summer months. I have heard there is a seasonal RLS. Is that true?  I started taking Requip in June of 2006 and was so pleased with the results. I actually slept through the night! My concern is, now, I continue to need to increase my medication to get the desired level. I feel very dependent. I am finding that I can't sit through a movie at the theatre anymore.

I also have to take the medication year round. I would like to try to wean myself off the medication for the winter. Any suggestions?

Also, in the past year I have gained 10 pounds even though exercise 4-5 days per week. Is there any correlation?

KB

Medical Reply

There are a significant group of RLS sufferers who do notice a seasonal variation. Although it seems that most who do experience seasonal fluctuations in their RLS get worse in the summer, some worsen in the winter. This has not been examined in any rigorous fashion (I did a mini study on this topic and found too much variation to determine a real pattern or publish the results) but clearly, some patients do have increased symptoms in the hotter months.

You may be getting tolerance (or even augmentation) from the Requip. If that is occurring, you may want to consider adding other RLS medication (anticonvulsants or painkillers) in order to lower the Requip dose. You could try to wean yourself off the Requip in the winter but then you will be back to square one quickly after restarting in the summer (although the drug holiday may help for a while).

Weight gain has been associated with Requip and may be due in part to water retention.

A Reply from KB

Sent: Sunday, October 14, 2007 5:55 PM
Subject: Re: RLS

I am lucky that I don't have any other health problems. On the contrary, I am in pretty good shape except the weight gain. Does the other RLS drug have the same side effects? I would love to try to go drug free for the winter. How do you advise trying to wean from the drug? I am willing to try. I don't take any other medication.

KB

Medical Reply

Mirapex is very similar to Requip. The other medications (anticonvulsants and painkillers) are entirely different.

When you are ready to go off the Requip this winter, you could just decrease your dose (cut the pill in half) and see if that still keeps your symptoms at bay. If so, you could then see if discontinuing the medication also works.

Sent: Sunday, October 14, 2007 9:44 AM
Subject: RLS and Melatonin

I'm female, 52 years old. I want to report that I had a experience very similar to the patient (Eric JS), one of the letters on your website. My endocrinologist suggested using Melatonin supplement in the evening and after a period of time I had strong RLS symptoms. I stopped melatonin and the symptoms diminished almost to zero.

Marta S.,
Brazil

Medical Reply

Currently, there are no articles describing any link between melatonin and RLS. Other than a few anecdotal cases such as yours, I have not heard of many RLS complaining of problems with that drug. However, with more cases such as yours, this may clearly be worth further investigation.

Sent: Sunday, October 14, 2007 3:01 PM
Subject: RLS treatment?

My doctor has put me on Cymbalta , Lyrica and Lortab at night I also take Triazolam for sleep . I am calmer now than I have been in years. I now only need 1 Lortab at night . I do have a craving for sugar which I hope will not become a problem. I had written you several times in the past and am so thankful for your website. I just wanted to let you know the medications that are working for me as of now.

Maybe this will be a help to someone else. Of course warm baths and keeping the hands busy also help. Because of your website I feel I am very informed of this terrible disorder so many of us are suffering .

TW, OK

Medical Reply

Those medications sound fine. However, Cymbalta does (like other antidepressants) have a significant tendency to worsen RLS.

Sent: Sunday, October 14, 2007 10:03 PM
Subject: Drug Change

Thanks so much for your great information and all that you do for those of us who have RLS. I have had RLS all my life and have been on all of the drugs used for RLS at one time or another. I usually take a drug holiday (go off Mirapex) for a short period of time, but my drug of choice when I am not on Mirapex is Permax. I know that Permax has been taken off the market and am wondering what I should do for this drug holiday.

I must tell you that my Mirapex regimen is 0.25 (3 or 4 tabs. per day) along with Oxycodone 5 mg. (2 to 3 tabs per day). I am at a loss as to what to do since Requip does not agree with me. I usually go off Mirapex when I feel I have to take more to get the same results (augmentation), which is where I am right now.

Please advise me with regards to this drug holiday.
Rosemarie (69)
Canada

Medical Reply

Drug holidays from dopamine agonists such as Mirapex are not well defined or understood. Aside from Requip and Permax (which you can no longer use), only bromocriptine (actually not too bad an RLS drug), cabergoline (not sure if this is available in Canada and Neupro (also not sure if this is available in Canada as it just became available in the USA).

An alternative to using a dopamine agonist for your drug holiday would be to increase your dose of oxycodone or to add an anticonvulsant such as gabapentin or Lyrica.

Sent: Monday, October 15, 2007 6:13 AM
Subject: RLS

I suffer terribly from RLS and have been taking the maximum dosage of Requip for about a year. I've noticed a tremendous amount of edema in my ankles and calves on a regular basis and most mornings in my hands and face. I also take 20 mg. Prozac daily. My doctor has me on 20 mg Torsemide and 2.5 mg Indapamide which helps a little, temporarily.

Could the combination of Prozac and Requip be causing the edema? There are days when I can lose as much as 5 or 6 lbs of water weight, but gain it right back. It's driving me absolutely crazy.

Although the Requip has not totally eliminated my RLS, it does help a little -- if I take it in time. I could not imagine living without it; however. Should I ask my doctor to switch me to Wellbutrin instead of the Prozac? Would this be a better alternative and eliminate the edema?

Bobbe S.

Medical Reply

The change from Prozac to Wellbutrin will likely not help your edema problem but it should help your RLS. You may then be able to decrease your Requip dose, which is a more likely cause of your edema. Of course, it is also very possible that the Requip is not causing your edema problem but it may be due other common causes such as varicose veins.

Sent: Wednesday, October 17, 2007 1:38 AM
Subject: RLS AND EATING IN THE MIDDLE OF THE NIGHT

I have had RLS for approximately 6 years. Tried Requip, gave me dystonia; Sinemet gave me insomnia; Mirapex nausea and SEVERE insomnia. All worked for movement. But then the pain started; so, we took Ultram, which helped, but of course, also caused insomnia. So, on come the benzodiazepines, which all give me night sleep eating!!! Klonopin makes me ravenous. I'm ready to kill myself at this point, I'm so sick of it. Even Ambien, etc, make me sleep eat. HELP.

Restless in Seattle

Medical Reply

Try a small dose of a low potency opioid (such as Darvon) and/or gabapentin.

Sent: Wednesday, October 17, 2007 12:44 PM
Subject: RLS and my medications

I have had RLS for more than 4 years and I have your very informative book but there's always more questions. Why do my legs start jumping after I sit down, especially after 6 pm ? It used to be later, but recently, I can't sit to read or watch TV so, I have to stand or walk around until time to take Requip 1 mg. + .05 mg My doctor just increased my dose and sometimes a little nauseated, but sleepy,

What can I take from 6 to 10 pm?  Also, if my legs wake me up, I can take a 6.25 mg. Ambien  or at 3 am I will sit in a tub of hot water just to me knees. Why does this help? Does this have to do with the brain and nerves?

Julie W.

Medical Reply

It is quite possible that you are experiencing augmentation from the Requip. This means that the Requip itself may be causing some worsening of your RLS, especially the earlier onset of symptoms and the inability to sit as long as usual. However, as long as the symptoms are not too intense, the augmentation can be handled by simply taking additional earlier doses of Requip.

Although Requip is FDA approved for dosing only once daily before bedtime (since that is how the makers of Requip, GSK designed their drug trials to get the drug approved), we commonly dose Requip up to 2-3 times per day. Therefore, you can simply take an additional dose at about 5 pm (which should get you through the entire evening and bedtime) then a second dose at bedtime to carry you through the night. With this regimen, you should not have to use any other drugs to get complete control of your RLS symptoms.

If your RLS continues to get worse (occurs earlier and earlier in the day and become much more intense), then a change to other types of RLS medications (anticonvulsants or painkillers) should be considered.

Sitting in a tub of hot water is a common counter-stimulation method (like shaking your hand after hitting a finger with a hammer) that tends to help RLS symptoms.

Sent: Wednesday, October 17, 2007 8:01 PM
Subject: RLS advice?

I'm caring for my 75 year old father who suffers from RLS in addition to type 2 diabetes, congestive heart failure (defibrillator implant) and glaucoma. I've been concerned about the side effects of RLS meds on his other health conditions. He's been a long-term RLS sufferer (over 30 + years) and he's tried many, many different prescriptions (Sinemet, Tegretol, amantadine just to name a few).

He's been a fairly long-term user of the following meds with the exception of tramadol which was only added in the last 6 months or so. Currently, he's taking Neurontin 2,400 mg daily (600 mg tabs, 4x/day), .25 of clonazepam (decreased in the last four months from two pills of .5 each because he's fallen a few times and I blame the clonazepam), also .5 of Mirapex (also decreased from 1 mg in the same time period) and finally, 50 mg of tramadol. One night this past week he forgot to take his night-time dose of Mirapex, Neurontin, Topral (for his heart) and clonazepam and he didn't sleep for 24 hours! He'd only had the tramadol because we try to take it, as-needed, as a separate dose, but it seems to have become a regular addition to the regimen. Anyway, the next night he barely slept 2 hours and he continues to be extremely restless with very little rest or sleep and no naps during the day.

His health is fragile and we can't see a neurologist until December. He's lost two primary care doctors (due to HMO buyout) and there's no continuity of care. Unfortunately his doctors have pushed all kinds of meds on him. I'm not sure if we're seeing diminishing returns with this many RLS drugs to treat his condition hence the effort to decrease his dosages. His health is declining overall; he has an iron deficiency (almost anemic) and I fear his circulation problems are aggravating his RLS. In the meantime he desperately needs to rest at night (he can't even nap during the day). Not sure if weaning off the clonazepam and Mirapex are making matters worse or, if anxiety about his declining health is simply kicking his symptoms into high gear. He is also taking vitamin D (400 iu) and one iron supplement tablet a day. I would like to try more aggressive iron therapy but we won't see his primary care doc until the end of the month. In the meantime, no one is getting much sleep since his condition affects us all at night. But most of all, I'd like for my Dad to have a peaceful night's rest to replenish his diminishing energy and to regain some joy.

Any advice as to the safest and most effective course of action in this case? (I understand Requip is similar to Mirapex--which he's already taking--but Requip may also have some cardiac events as side effects, is this right?)

Julie C.

Medical Reply

Both Requip and Mirapex should not bother his heart. However, they are very similar and at this point I do not see any good reason to change the Mirapex. He may be dependent (and tolerant) to the clonazepam and thus lowering the dose or stopping it may readily result in insomnia. Weaning off clonazepam should be done very slowly and drugs like Ambien or Lunesta may be needed to help him sleep.

If the RLS is still a problem then either a higher dose of tramadol or substituting and opioid may be considered. However, these do have possible side effects. It is hard to give further advice as your father's case is clearly quite complicated.

Sent: Wednesday, October 17, 2007 9:31 PM
Subject: RLS In Australia

The sensations to me are burning accompanied with an extremely uncomfortable feeling in the legs, arms, ankles. Knuckles of both toes and Fingers even in my back. Yet when I am touched in the areas that I say I am burning up I am told I feel cold and the hot areas of my back and limbs are not affected by RLS. This RLS starts up on its own and as well has a trigger such as a small pain in my leg with trigger it, if I have a sore that’s itchy and I scratch it that will trigger it.
Even just an itchy arm, leg, or back after scratching it will trigger it.

I have also found that leaving my arm in one position (for example cuddling my Girlfriend and falling asleep with my arm over her) when I wake during the night my arm is sore and I can almost guarantee it will start RLS. 

Even after my arm falling to sleep and the pins and needles are gone it will start. This feeling is so bad that I end up punching my limbs to get relief to no avail, But what I have noticed is that if you have a Very hot shower and just let it run over the effected areas ( or your whole body ) then go strait to bed and close your eyes and fall into sleep I find that you will sleep comfortably. This is only if you are not distracted in some way from getting to sleep

This for me is a relief but unfortunately when I have my shower just before bed this technique dose not work unless only during the night when I wake with RLS I shower and then this will work. And if you can give me suggestions medication herbal and medical and or no medicated please I would love to hear them.

Ben H.,
RLS sufferer in Sydney Australia

Medical Reply

Other than some physical measures (such as you have already noted such as taking a very hot shower) which are really just counter-stimulus type of behaviors (such as shaking your hand when you hit your finger with a hammer), there are not really any known proven non-medicine treatments of RLS that really work.

If your symptoms become troublesome enough, you may want to consider talking to your doctor about prescription medication.

Sent: Thursday, October 18, 2007 12:02 PM
Subject: PLMD Questions

Reviewing your website drug list, I noted that Prosom generates metabolites which can result in next day sleepiness. I am currently taking temazepam at 30 mg with Neurontin on alternate days. Does temazepam generate metabolites ?

For me, temazepam works well but I often wake too early. I am considering Prosom as a longing acting alternative. Does Xanax generate metabolites ?

What is the clinical experience with valerian root?

Steve M.

Medical Reply

Temazepam does not generate active metabolites and has a half-life of about 10 hours (this is an average so it can vary quite a bit in different individuals) which should be more than adequate to sustain sleep for 8 or more hours. However, you are clearly are not getting enough sleep with this drug. Xanax is fairly similar to temazepam. Ativan has somewhat of a longer half-life. Both of these drugs do not generate active metabolites.

Prosom has a half-life of 10-24 hours and has many active metabolites as you have noted. Therefore, I do not recommend that drug. The next day sedation/drowsiness can be very unpredictable. It is also very difficult for those affected by this next day sedation to appreciate the problem.

Valerian has not been well studied so I cannot comment on this drug.

A Reply from Steve M.

Sent: Tuesday, October 23, 2007 11:26 AM
Subject: Re: PLMD Questions

There are several articles in the 10/23/07 New York Times that may be of interest.

In an overview of sleep medicines, an anti-depressant was mentioned: trazodone. Its inexpensive and commonly prescribed for insomnia. The article also mentioned that trazodone can cause next day sleepiness. What is the clinical back round?

Steve M.

Medical Reply

Trazodone is one of the commonest prescribed medications for sleep by non-sleep specialists. It is prescribed for its (generally unwanted) side effect of sleepiness but since it has no addictive potential, it is used very often. Unfortunately, it has a long half-life and often causes next day sedation. I rarely prescribe this drug as there are so many better ones that help sleep and improve next day performance.

Sent: Wednesday, October 17, 2007 10:05 PM
Subject: Neupro? Methadone? Lyrica?

I had mild RLS for years, just occasional episodes every few months. When I got pregnant at 41, it went crazy. I nursed my boy for 2 1/2 years and almost that whole time, (even after I stopped nursing him at night) I would wake up with that dreaded sensation in my legs every hour and a half or two hours, and it would take me 20 minutes to 2 hours to et back to sleep. My short-term "remedies" were very hot baths, intense isometric exercises of my legs, and orgasm. Those things usually made the sensations go away for a couple of hours. Looking back now, I don't know how I made it through those 3 years.

I also tried every natural approach in the world -- acupuncture, herbs, homeopathy, megadoses of various vitamins -- but nothing helped except I noticed that two Thanksgivings in a row, I slept much better that night. I tried a few repeat experiments with turkey and sometimes they worked, sometimes they didn't. I tried taking tryptophan pills but they didn't work. I've had various blood tests (ferritin etc.) and they turn up normal.

Once my boy was ready to quit nursing, I decided it was time to start trying some drugs. A doctor started me on Mirapex. It was like a miracle -- all of a sudden I could sleep through the night and even take a nap the next day, taking .5 mg at night, with apparently no side effects. I did have difficulty concentrating on my work, and I did seem to be doing some extra Internet shopping, occasional small "binges" (5 candle holders, 10 pairs of slippers in different sizes that were for guests who might come to my house and have cold feet in the winter, 5 pairs of dance pants with stripes down the sides, etc.) but it wasn't too extreme.

Even so, I wondered if my feelings of ADD and the extra shopping were related to the drug. My doctor said "probably not" but said I could try Requip, so I did. It was a nightmare -- it made me nauseous and I started having RLS symptoms during the day, like when driving, which I never had before. So I went back to Mirapex.

Then I discovered eBay, which is like a cross between shopping and gambling, and over a few months I had a major manic binge and spent $5-10,000. By that time it became clear that it was the drug, and now I'm way in debt.

I changed doctors, got one who knew about the OCD side-effects of Mirapex, and he put me on Sinemet. After about a month, I could concentrate on work again and was no longer obsessed with eBay. Unfortunately it doesn't work very well for me -- I wake up after 2-3-4 hours and need to take more. I've tried the CR version but it just didn't seem to work at all, or took so long to kick in that I'd be in bed for a few hours, kicking around and miserable until it finally worked.

Does augmentation with Sinemet happen with everyone? I've been on it for months and my symptoms don't seem any worse. Also how much is okay to take? I have been taking it 2-3 times each night to get 8 hours of sleep. I'm taking the 25/250 dose.

Also I know you've said that Neupro probably won't work if other dopamine agonists didn't work, but my experiences with Mirapex and Requip were so different from each other, so I wonder if it's worth a try. And what about Lyrica or an opiate? I only need to take medicine at night, to sleep. Sometimes the RLS sensations are painful, especially in my feet, but not usually. I'd love to be sleeping through the night, not waking up two or three times with that dreaded sensation and then needing to take more medication.

I've also tried Klonopin. It doesn't seem to work alone but when I take it with Sinemet, I get longer stretches of sleep. It seems to relax and slow down my system, which I think helps with the RLS symptoms. Unfortunately after a week or two I start getting these headaches, and I've heard about the intense withdrawal, so I stop taking it until I'm desperate again.

Any thoughts about Tryptophan? Any other suggestions? My current neurologist is very nice and supportive but I feel like I'm the one always going to him with ideas or suggestions he hasn't heard about yet.

A tired dancer in Berkeley

Medical Reply

Augmentation with Sinemet (especially with 2 or more of the 25/100 tablets per day which is much less than you are currently taking) is almost universal. This drug is really not meant for daily RLS. You may be quite correct about using other dopamine agonists as they may also cause problems such as compulsive gambling. However, you cannot be sure until your try a new one such as Neupro. Due to its long duration of effect (24 hours), Neupro would be very unlikely to cause augmentation.

Klonopin does not really help RLS but does help sleep. However it has a very long half-life (40 hours) so is not really a great choice for promoting sleep and once dependence and tolerance occurs, it can be very hard to get off this drug. There is no data concerning tryptophan and RLS.

Lyrica (or other anticonvulsants) is a good choice for your RLS. Painkillers (opioids or tramadol) are other good choices that can be used alone or with the anticonvulsants. You can also take a shorter acting sleeping pill (such as the non-benzodiazepines Ambien or Lunesta) with these drugs.

Sent: Friday, October 19, 2007 10:19 PM
Subject: Do I have any rights to decide what I put into my body?

I am male, 30 years old, with moderate Tourette's syndrome. I have rather severe RLS, at least to my personal judgment.(4 days a week on average, with effects typically starting around 3-4 pm, being severe by 7 or 8, and often prolonging time to get to sleep by 2-4 hours). No fun. At all. I have been diagnosed with RLS by my doctor (a general M.D., not a specialist). I am not currently on any medication for my Tourette's, as in the past, every one I have tried, has had side effects that for me, that outweighed the benefits. Overall, I have a history of severe reactions to a substantial percent of the medications I have used ( severe pain hot flashes (not normal ones) from Benadryl injection, severe reactions to ketoconazole--put me in the ER, allergy to Bactrim (tightened throat, rash on chest and arms, nasty taste in mouth), bad reaction to Tetanus shot (entire body hot and in pain for entire day afterwards), Haldol, Luvox, etc.). In fact, there are very few medications that don't have a substantial negative reaction, based on my sampling so far. Perhaps it's genetic. My mother is exactly the same way. I think it's important to outline this so that it is clear why I have no desire to put questionable things into my body nor do I have any desire to experiment.

I don't drink (have never been drunk), have never used tobacco and have never used an illegal drug/substance. I try to be very careful in regards to what I consume, and if I have to use any sort of medication, I use as careful as possible (researching all of the known interactions, dose levels, consequences, etc.).

Now let's get to the issue: my rights (if I have any) to decide which medication I should try for RLS. I am fully aware of the most commonly used medications (Mirapex and Requip). I don't like several things about these medications, personally, as compared to alternatives, based on what I have read. One is the tendency for either one to eventually lose effectiveness. A 2nd reason is that I do not know of any proven improvement in the condition(s) after prolonged use (in fact, I believe I have seen some things that implied the opposite might occur: augmentation - please correct me if I am wrong). A 3rd reason is the tendency for either of these to cause narcoleptic symptoms in the user, without warning (yes, I am aware that this more typically occurs at Parkinson's Disease level dosages). That is simply not a side effect I am willing to risk, especially considering that my job involves constant driving. A 4th reason is that these are not long time tested drugs, it seems. In fact, they seem to be relatively new. Long term issues? Who knows.

Now, there are myriad of other medications, and most are covered quite nicely in 'The treatment of restless legs syndrome', P. Montagna (Department of Neurological Sciences, University of Bologna Medical School, Bologna Italy), along with many of the negative issues involved with each. A darn good basic summary, it seems.

The one treatment that really stood out to me as being one that I would like to try was opiates. Using a very old known opiate (oxycodone for example) that is specifically shown to have high efficacy, and it's long term use consequences are well known (this med seems to be the better part of a century old) and seems to actually improve symptoms over time (seemingly opposite of the two most popular drugs.). I have used oxycodone (2005 post-surgery prescription) and hydrocodone (2007 kidney stone prescription). I had no negative side effects that I could notice from the doses given aside from minor itch in my feet after taking the oxycodone -- might have been my imagination). These did not make sleepy, tired or sick feeling in any way. I did not experience constipation. I did not feel 'physically addicted' when the prescriptions ran out. Referring to an article published in November 2001, 'Long Term follow up on restless legs syndrome patients treated with opioids', Wiley InterScience (article no. 88511274), opiates appear to be a superb treatment. Addiction is no issue when used properly in treatment, it seems. Long term (average 7 years) treatments on the whole, appear to be with near complete success. Some patients were subjected to polysomnography after long term use, and only a tendency towards improvement in all parameters was found. In 2005 after my surgery, the RLS was still very mild. But this year is has finally become what I consider severe. During the kidney stone (it took a month to pass!), I had the hydrocodone, which I took not every day, but perhaps 4 days a week, at 15 mg dose, once a day. I noticed that my RLS was a non issue, it was simply gone. Because of that, in a way, the month with the kidney stone was actually great (despite the pain in my back), because I got to be relieved of the RLS. I also had some of the oxycodone left from the 2005 surgery. I tried these a few times(10mg dose), and it also worked for the RLS, though it seemed to last longer with a single dose as compared to the hydrocodone.

Now, I am no child. I am a 30 year old man. Do I have a right to choose oxycodone (for example) over Requip (for example)? I have not been to another doctor about my RLS, but my current one will absolutely not prescribe an opiate for RLS, despite the evidence that it is a proven safe treatment and with extremely low rate of addiction in the treatment of therein. His sole reason was that it is addictive. I showed him the highly credible article demonstrating that it was not likely to be addictive in the proper treatment of RLS, but he did not seem to care. In fact, at this point, I suspect he believes me to be a drug abuser, based on his attitude towards my desire to use an opiate as opposed to his desire to treat me with Requip.

So, do I have a right to be able to choose? If so, how would I go about this? Can you recommend a RLS specialist that will give me a fair chance to present my case? I live in Hurt, VA, close to Lynchburg and Danville, VA. I'll even travel to University of Virginia Medical Center in Charlottesville, if you think I can find such a fair chance there.

Don't spare my feelings. Let me know what you think of my perspective(s).

Christopher W.

Medical Reply

Your thoughts and observations on the treatment of your RLS are actually quite reasonable. Although the dopamine agonists Mirapex and Requip are the drugs of choice for RLS, they are not necessarily the best for everyone. However, most doctors will not readily prescribe the second line drugs until it has been demonstrated that the first line ones are either not effective or tolerated. In addition, the concern of patients wanting opioids for reasons other than treatment of RLS tends to be a very big concern for most general doctors.

Dopamine agonists only worsen RLS in a small percentage of cases. Most do very well with these drugs despite the known side effects. Opioids do not change the course or symptoms of RLS for the better. They simply treat the symptoms of RLS.

Although you have a right to request that a trial of a dopamine agonist be side stepped in order to go directly to oxycodone, your doctor also has a right to refuse to prescribe any drug that he or she does not feel comfortable with writing for you. However, since you are correct that a low dose of even a potent opioid like oxycodone is very safe and usually well tolerated, a specialist who is more comfortable with prescribing the drug may be more willing to let you try it without prior failure on a dopamine agonist. This of course may vary from doctor to doctor. You may have to try several before finding one who is compatible with your needs.

I do not know any RLS specialists in your area who would prescribe oxycodone that I can recommend to you.

A Reply from Christopher

Sent: Thursday, October 25, 2007 1:39 AM
Subject: Re: Do I have any rights to decide what I put into my body?

Do you think it would be easier for a doctor to prescribe hydrocodone for RLS as compared to oxycodone? Because it appears that hydrocodone is a lower DEA Schedule rating from what I have found, and perhaps doctors are less afraid? Do you recommend hydrocodone for RLS condition? As I stated before, hydrocodone (left over from a kidney stone prescription) did work, but did not last as long as the oxycodone (comparing a 15 mg hydrocodone to 10 mg oxycodone dose).

The oxycodone would provide relief for a good part of the evening while awake (taking around 7 or 8 PM and going to bed at about 11PM) and still be effective for me to get into deep sleep and make it pretty much the entire night. Hydrocodone would have to be taken just before bedtime in order to last the night. However, hydrocodone was not specifically mentioned among the opiates suggested in the WileyInterscience document as having been evaluated in the long term testing, so I did not inquire about this as a possible prescription with my doctor.

I notice that there exist many online pain clinics that can refer you to or send a pain doctor to you locally and then sell you prescriptions online.

Christopher W.

Medical Reply

Oxycodone is more potent than hydrocodone, especially for RLS (there is no published data on this issue, this is mostly from my own clinical observations). It also tends to last longer than a comparable dose of hydrocodone. Additionally, oxycodone has the advantage of having no acetaminophen (which does not help RLS so can only cause side effects) which is not the case for hydrocodone.

Since hydrocodone is schedule 3 compared to schedule 2 for oxycodone, it is easier for doctors to write. However, you will likely run into similar concerns for prescribing the hydrocodone for long term use as with oxycodone.

You may not find as much data for the long term use of hydrocodone as it is indicated for short term pain relief compared with the longer term indication for pain relief (such as for cancer patients) given to the more potent oxycodone. Therefore, we don't know if hydrocodone is any better or worse for long term use, just that it has not been studied for this purpose.

I am not sure about the legitimacy of referrals to clinics that will sell you prescriptions online for pain. There certainly is something that sounds unprofessional about that process.

Sent: Saturday, October 20, 2007 2:07 PM
Subject: RLS and other medications

I'd like to ask another question. I have been taking simvistatin 20mg nightly for about one year for high cholesterol levels. I note that a possible but less common side effect' is "abnormal sensations in the arms and legs".

I have had RLS for 30 years and for the last 10 years also during the day, in fact at present it is pretty much 24/7, though not always noticeable if I am mobile. I started Requip about one year ago. The RLS is quite well (though not always 100%) controlled by daily 2 mg Requip which I spread throughout the day in 4 doses. In fact I take one of the doses during the night when I awake for the bathroom (a common enough feature I would reckon at nearly 60 years young!!) This reduces symptoms at around 6 am which is a particular blessing at weekends when I don't have to get up for work. For several months my doctor (reluctantly - dependence/addiction etc.) has also prescribed me 2 mg Valium as a sleep aid but now I don't always take this, and find most times I can cope without it, though at the time of prescribing I definitely needed the help it gave.

Would the Simvistatin have an adverse effect on RLS. i.e. could the 'possible but less common side effect of abnormal sensations in the arms and legs' mean it could aggravate RLS... I wonder what they mean by 'abnormal sensations' ? Would you have any views on Simvistatin? When I checked on the internet with regard to drug interactions it did not come up as adverse to Requip.

Betty R.,
Northern Ireland

Medical Reply

There are no interactions between simvistatin (Zocor) and Requip or RLS. Typically, the adverse reaction caused by statin drugs (simvistatin) is pain in the muscles of the legs or arms. The abnormal sensations otherwise are very uncommon and would not get better with activity or worse with rest (like RLS). A simple way to determine if simvistatin is causing any of these problems would be to stop it for 1-2 months (which is no bid deal in terms of preventing hardening of your arteries) and see what happens.

With your 24/7 RLS symptoms, you might do better with the new dopamine patch, Neupro (although it is only approved for Parkinson's disease).

Sent: Monday, October 22, 2007 6:37 AM
Subject: Possible new treatment for RLS

I was treated successfully for periodic leg movement disorder for 15 years using Klonopin and its generic form, Clonazepam.

In January 2007, a refill of Clonazepam arrived from the mail order pharmacy which my insurance requires me to use. The pill was a different color and I noticed immediately upon starting this new bottle that the so-called Clonazepam was not producing the usual slight sedation at bedtime to which I had become accustomed. I contacted the pharmacy which informed me that they had changed to a different manufacturer (Purepac) and that my prescription had been filled with the correct generic. The pharmacy suggested I contact the manufacturer which I did only to have them say that there was nothing wrong with their pill and that it was manufactured so as to perform in a manner similar to that of the original trade name drug, Klonopin. It is possible that my reaction to the refill was purely subjective. I wonder if any others have experienced similar reactions after a change in manufacturers of generic Klonopin

In September 2007, I began awakening at night with horrendous symptoms in my legs which were new to me and which went far beyond the leg twitching and jerking for which I had been treated for so long. The new symptoms were: numbness of both legs and a sensation of crawling in the muscles which was intolerable. No movement or standing or walking relieved the symptoms. It felt as if the nerves in my leg muscles were all firing off in thousands of random and uncoordinated jolts. Within two weeks, these symptoms progressed to the daytime and my arms were also feeling jittery and twitchy. The anxiety from this was very high.

Coincidentally, at that time that I had a follow-up visit with a pain management specialist whom I had been seeing for referred pain in various places arising out of lumbar spine problems. He had previously given me epidural injections and radiofrequency lesioning into the lumbar spine with excellent results. I told him about my new and severe RLS condition. He said that he could try to address the restless leg syndrome through radiofrequency lesioning treatments if I wanted them, but first he would do a lumbar medial bundle branch block on both sides as a test run. The purpose of the test run was to see if they would give me any relief. If they were successful, he would follow up with radiofrequency lesioning in the same areas on both sides to give longer lasting results by deadening the nerves sending bad impulses to my legs.

These test treatments were successful in completely removing the symptoms of RLS, but only for three hours. I was concerned that the relief might have been more from the intravenous anesthesia than from the treatment itself but the doctor seems to think that the pattern of my symptoms during a week of observation after each injection is indicative of a reason to proceed with radiofrequency lesioning. I am now waiting to get an appointment for that and when I do get that treatment I have no idea how effective or long-lasting it will be. So far, this doctor has done a good job for me so I have faith in him Meanwhile, I have found that 50mg of Ultram daily takes the sharp edge off my symptoms.

I have not seen anything about radiofrequency lesioning for RLS mentioned on any of the RLS websites as a treatment. I wonder if fellow sufferers or your medical advisor(s) can shed any light on this.

David E.
Bradenton, Florida

Medical Reply

There is a very good reason that have not seen anything about radiofrequency lesioning for RLS as nothing has every been published on this treatment. My opinion (which obviously could be wrong) is that any relief that you received from this treatment is completely due to the anesthesia which should wear off over a few hours (and seems to correspond nicely to your symptoms relief time sequence). I strongly doubt that the radiofrequency lesioning itself will yield any benefit.

Klonopin does not help RLS symptoms but merely helps you sleep. With its 40 hour half-life (which tends to cause next day sedation often not appreciated by the user) and addictive potential, there are much better drugs to help you sleep (such as the shorter acting and safer sleeping pills, Ambien and Lunesta). You may want to consider changing your Klonopin (or generic clonazepam) to one of the newer safer drugs.

Ultram is fine for RLS but you may want to consider a dopamine agonist such as Requip or Mirapex which are the drugs of choice for RLS.

Sent: Tuesday, October 23, 2007 10:08 AM
Subject: need help in Canada

I was diagnosed with PLMD 2 years ago and was also diagnosed with low serum ferritin levels. Numerous tests have been conducted to find a source of the low iron and so far nothing seems to be wrong (no celiac, no internal bleeding, no heavy periods, etc).

I have been getting iron injections in the hip for the past 10 months and this has finally resulted in the ferritin level going from 5 to 15 ug/L. From my understanding, the ferritin level needs to be above 50 ug/L to have any effect on RLS/PLMD symptoms. Several people on the discussion boards have got for a single dose IV infusion.

I am trying to get this done in Canada and have had no luck so far. Is there somewhere that I can go to have this treatment done? Why isn't it being done in Canada?

Donna S.
Calgary, Alberta, Canada

Medical Reply

Iron infusion is the most efficient way to increase the body's iron stores (measured most sensitively by the serum ferritin level). It often takes 3-6 infusions to get the serum ferritin levels well above 50 (often the level is brought up close to 200). For reasons that we do not understand, RLS patients tend to lose iron despite the lack of any evidence of blood loss (which is really hard to understand but this may be a genetic problem unique to RLS and perhaps PLMD patients).

Here is the USA, iron infusion is only approved for patients with significant anemia (generally, hemoglobin less than 10) who do not improve on other therapies. Therefore, the majority of the patients that are receiving iron infusions for their RLS also have significant anemia. Exceptions would be those on experimental research protocols (such as done by the Johns Hopkins group) or those doctors who do so off label (this represents a very small minority).

Therefore, the situation is not much different here in the USA compared to Canada. If you are not significantly anemic, then finding a doctor who will infuse iron will be quite difficult.

Sent: Friday, October 26, 2007 8:24 PM
Subject: Lyme disease causes RLS?

My Restless LEG.....is not just in my leg anymore....it's in every part of my body now. It occurs in my fingers, hands, wrist, arms, shoulders, center of my back, hips, and every inch of my legs. It never starts the same place. There are many times I can put pressure on certain areas that is jerking me around and the symptoms almost stop, but when I stop the pressure, it comes right back.

Although I have never had it in my stomach area or around my head. Several area's are around the outside of my bone on the outside of my ankles. The bad thing is I am the fourth generation of RLS......as far as I know. My father had it severe as I do. I take Mirapex every night. I tried Requip, but for the first three night's was a nightmare, to the point my husband wanted to video me to prove how severe my RLS is.

Have you ever thought about RLS being the results of Lime's Disease? My husband got a tick on him, got the bulls eye and was treated with antibiotics. But I was told that there is not a test to test for Lime's Disease after the initial 10 days or so. But limes disease effects the nervous system right? But what does it do? This is just to get someone to think about it? I can look up Lime's Disease, but I don't think they know that much about it.
My father died from Multi-Symptom Atrophy about 10 years ago and he had tick bites all his life, never treated of course, he had sleep apnea, also he had something that caused him to choke and his throat to close up in the middle of the night. That was scary to see him go through this. And he also had several RLS. Low blood pressure too. Never drank any alcohol, but he was a work-a-holic....

My RLS is so bad sometimes I would love to just cut off my leg, except now it's not just in my leg....so cutting off a body part is not a good option anymore. My husband now has the video camera ready to record my dancing with RLS and all the noise, I make tossing and turning. Actually it is more like flopping around like a fish on land. My husband can just about time my actions and then he knows about how long my fish flopping will last. The bad part is that I take Mirapex - 1 mg, but on bad night's I take 1.5 mg. But the house could burn down and I wouldn't know it.

Then I have this bad habit of falling to sleep so fast when I get still, less than a minute at times. Now to top off my seemed to be ONLY HEALTH issue for being 47 years old. My landscape trailer was hit from the side by a dump truck driver that pulled into the road without looking up......I had pain from the time the accident stopped until now. I finally got someone to listen to my pain in my sacrum or lower back area and they did a MRI, now a bone scan. The bone scan shows a hot spot on my S.I. Joints. My RLS has increased in intensity since the accident 12-16-05.

I think I had several other issues in my spinal cord also. Could my RLS be getting worse from the accident and problems that occurred then? I can get severe RLS and get so mad about it and twist and turn and I accidentally pulled my legs up under me against my chest and the RLS stopped instantly and I fell asleep for a few seconds and when I woke up, I laid back down and the RLS was gone......can anyone explain that?

Medical Reply

Although Lyme disease can cause neurological symptoms it is fairly unlikely that it is a cause of RLS. There are many areas of United States and in the world that do not have any Lyme disease but still have the same amount of RLS. We also know that RLS has a genetic component (as you know already, it runs in families and they have recently found genes associated with RLS).

We do know that RLS may worsen after trauma, especially trauma to the spine. How or why this occurs is completely unknown. Your improvement with pulling your legs up against your chest is not an unusual treatment for RLS symptoms (although others may stretch in different fashions) and is often used by RLS sufferers to relieve their symptoms.

Since Mirapex is not completely resolving your symptoms, you should speak to your doctor (or a specialist if your family doctor cannot help you) about adding medication such as gabapentin (or other anticonvulsants) or painkillers. With proper treatment there is an excellent chance that you can achieve complete relief of your horrible RLS symptoms.

Sent: Tuesday, October 30, 2007 7:39 AM
Subject: Pins and needles with Mirapex?

I am 47 year old female, and I have had RLS for at least 15 years and have been on clonazepam, Requip and now Mirapex. Mirapex worked fine at first, but at 0.25mg I would often get a pins and needle sensation in the soles of my feet that really bothered me, and then a few months later, about 30 min. after taking the Mirapex in the evening, it seemed my legs would start jerking and the RLS symptoms were actually brought on by the medicine, yet later while sleeping they would subside. I eventually reduced my dose to 0.125mg and had relief for a while.

Now the pins and needles in the soles of my feet is back, and I still get the RLS symptoms at night. I am afraid to increase the medicine again and not sure what to do. Any suggestions? I haven’t read about anyone getting paresthesia from Mirapex.

I just read about certain foods and other meds making the RLS worse. Which foods? The only other med I take is an occasional Nexium, and Fioricet for migraines.

Debbie

Medical Reply

Although paresthesia sensations occur quite uncommonly with Mirapex, they have been noted by others. You may (or may not) get better results from the other dopamine agonist, Requip. It is certainly worth a try.

If the dopamine agonists both cause this trouble, then you should switch to gabapentin (or other anticonvulsants) or painkillers for your RLS.

Some RLS patients do notice that foods worsen their RLS. Typically, carbohydrates (especially refined ones) and ice cream aggravate RLS but you must see for yourself if they bother you.

Sent: Thursday, November 01, 2007 1:15 PM
Subject: Klonopin for RLS?

I read somewhere in here that you don't like to use Klonopin fro RLS. My neurologist switched me from Lorazepam to Clonazepam when he diagnosed me with RLS. I currently take 1 & 1/2 tablets of the .5 Mirapex at night and one 10 mg. of Doxepin. He prescribed me to take 1/2 tablet (.5 mg) up to 3 times daily as needed for RLS or anxiety.

I do not want to get hooked on this stuff as I have read horror stories, so the most I have ever taken of it is 1/2 tablet, but then cut down to 1/4 tablet a day. I did finally quit taking it altogether, but found by the third night, I could not sleep at all. Is it possible, even after 3 days off, that I am hooked to this pill and that's why I couldn't sleep? Also, should I go back to taking 1/2 pill (of .05) mg. of the Lorazepam a day to help with anxiety and RLS or can I get hooked to this as well?

Neither one of my doctors seemed concerned about me getting hooked, but I still don't want to take it if I can help it.

Karen

Medical Reply

Klonopin does not generally treat RLS symptoms but rather helps RLS patients fall asleep. As it has a 40 hour half-life (the time it takes your body to remove half of its level in your body), it is still quite active even the next day (or even the second day after which is why you had trouble falling asleep on the third day). This medication can cause considerable daytime sedation that often is not appreciated by the patient. It also has a significant dependence/tolerance potential. Lorazepam has a much shorter half-life (10-20 hours) than Klonopin but still much longer than more appropriate sleeping pills. Lorazepam also has a similar dependence/tolerance potential.

The non-benzodiazepines (Ambien with a 2.5 hour half-life and Lunesta with a 6 hour half-life) are more appropriate and safer for long term use as sleeping pills.

Doxepin is a non-addicting pill that is often used for sleep. However, it has a fairly long half-life which often results in next day sedation and most often tends to worsen RLS (unless it puts you to sleep immediately).

A Reply from Karen

Sent: Thursday, November 01, 2007 8:19 PM
Subject: Klonopin for RLS?

The Klonopin was helping my RLS symptoms that I was having during the day, that is why it was prescribed to me. But do you believe that even just taking 1/4 of a .5 mg Klonopin would lead me to not be able to sleep on the third day? How do I get off of them then? I can't go any less than that, so what do I do? My doctor said not to worry, but I am concerned. If I do what I did before, and can't sleep on the third night, will it subside after that, and will I be off of it and able to sleep by the next night?

Karen

Medical Reply

It is much less likely that taking Klonopin at that low a dose will lead to dependence, but that is a very individual issue. You could use Ambien or Lunesta to help you sleep for a few days after stopping Klonopin. That should help you get off Klonopin easily.

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