Patient letters on RLS symptoms and remedies- Page 66

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Sent: Tuesday, March 07, 2006 9:49 PM
Subject: Requip and Sleepiness?

I have found that 1 mg of Requip taken twice daily controls my RLS. However, I become drowsy and sluggish after the daytime pill. Is it possible that 2 or more mg taken before bedtime would control the symptoms for 24 hours without drowsiness?

Finally, can you please tell me whether Lexapro (Citalopram) worsens RLS symptoms? And if so, is there a better alternative?

Boyd M.

Medical Reply

Your plan to take a higher dose of Requip at bedtime would not work. The drug lasts about 6-10 hours and a higher dose would only be effective for a little longer than your usual dose. However, the higher dose would have an increased chance of causing side effects as the peak dose would double. Currently, 12 and 24 hour time release forms of Requip are being tested which may when available (in about 2 years or so) do what you are currently looking for (as the slower release forms tend to have lower average blood levels which will cause less side effects such as sleepiness).

You may want to consider using tramadol or a painkiller in the daytime instead of Requip, as long as they do not cause any drowsiness.

Lexapro, like all the other SSRI antidepressant medications tends to worsen RLS. Wellbutrin, has some dopamine action and either does not worsen RLS or actually can help it.

Sent: Wednesday, March 08, 2006 9:24 AM
Subject: PLMS and decreased RBC's?

My husband has had RLS for the past 10 yrs. Fortunately he is a sound sleeper and hardly ever wakes up because of it, but I am a very light sleeper and have watched him kick and twitch for thousands of nights. Recently he has had decreasing RBC count and is now at only 3.81. He is otherwise very healthy and fit for his 55 yrs. My questions are 1. he has taken Ritalin and Wellbutrin for the past 5 years for ADD...can this be the cause of the increased RLS? And is low RBC ever connected to RLS?  I have been giving him iron supplements which have his iron up, but the RBC keeps slipping.

His doctor is recommending a bone marrow test which I think is premature and too invasive.  What about B12 in this situation?

Diane N.

Medical Reply

Your husband does not have RLS (from your description) but rather may have PLMS (Periodic Limb Movement in Sleep). This problem may be due to low iron levels (the serum ferritin level is the most sensitive test and should be greater than 45).

The Ritalin might cause more PLMS but Wellbutrin has been shown to improve PLMS.

I cannot comment on his need for a bone marrow test as I do not have enough information on that topic and furthermore, it is off topic from RLS which is all we answer about on this site (much too busy to handle any other stuff).

Sent: Monday, March 06, 2006 2:57 PM
Subject: RLS what dang fun!!

I have had RLS and have been taking Klonopin at night but it seems to wear off much faster after 6 years of it every night.  I am going to date myself and go back to the ways of my generation and delve into Marijuana again but this time in tincture it seems to really help with sleep at night time.

Michael M.

Medical Reply

Klonopin does tend to cause tolerance and increased doses are needed to get the same effect. If you are to go off Klonopin, do this very slowly under a physician's supervision as you can experience withdrawal problems.

Marijuana does help RLS but of course, it is illegal which presents other risks.

A Reply from Michael M.

Sent: Wednesday, March 08, 2006 10:14 AM
Subject: Re: RLS what dang fun!!

Well I have my Tincture made and I have to report some interesting things here. I put it into a bottle that is normally used to dispense drops of essential oils so I can administer sublingual. this is great for when I am out in public. I do not get the "high" from the tincture that smoking produces but rather a very obvious relaxing of the muscles with good mental clarity intact.

I still would not recommend driving while doing this but if your at Disneyland with the kids nobody looks at you funny for putting a drop of something under your tongue. Also there is no tell tale smoke aroma floating around setting a bad example and suggesting recreational use. For the legality part of it I talked to several officer friends and as their is no bud or leaf on the person they really have no clue as to what to do with it and advised that the 10cc amount of extract would not be enough to waste there time with.

Additionally as it is in tincture form they (all three of them) stated they would believe the medicinal use if it were explained to them on the street. It took 1 gram of good quality green bud to make 1 fluid ounce of tincture.  So the only real hazard seems to be the procurement of the raw product or growing your own.

Michael M.

Medical Reply

Thanks for the update and good luck with your tincture. Be careful when procuring the raw product.

Sent: Thursday, March 09, 2006 9:52 AM
Subject: Anticonvulsant medication or narcotics for RLS?

I have suffered from RLS for years, and for the past two years I have been treated by a physician in my home area, Salt Lake City, Utah. I have been treated with Mirapex, Sinemet, and Requip all of which the side effects of nausea made it so that I could not take them. I have tried tramadol which I found I was allergic to. I have recently been on Neurontin and pentazocine but the Neurontin has caused me to gain so much weight that I cannot tolerate gaining more and have quit taking it.

My doctor has just prescribed Lyrica which the pharmacist has told me has the same side effects of swelling and weight gain as Neurontin. I don't want to take it. I take Lorazepam at night to help me sleep but that is not enough to control the restless legs. Lunesta didn't work as well for me as Lorazepam. My physician is reluctant to prescribe Lortab, in fact she told me she would not because of the risk of dependency and she claims she would lose her license to prescribe drugs if she did for a long term basis for RLS. I have tried Lortab and it works but cannot find a doctor in my area who will prescribe Lortab for me.

Any suggestions would be appreciated? Where do I go from here?

Medical Reply

Lyrica may or may not cause the same side effects as Neurontin in any given individual. It (and many of the other anticonvulsant drugs) is worth a try.

However, it is most likely that a narcotic will be the safest and most effective RLS drug in your case. Taken once or twice a day the chances of developing tolerance or dependence are virtually zero. Most doctors do not understand this concept and therefore are reluctant to prescribe narcotics for painful or discomforting medical conditions.

I am not sure how you can convince your doctor that the Lortabs are likely the best solution for you (although I like methadone better as it has no acetaminophen in it, is more effective and is likely even less addictive). As long as she documents her use of the narcotic in your chart and does periodic follow-up visits, she should have no fear of losing her license.

Sent: Friday, March 10, 2006 5:21 PM
Subject: RLS and Requip?

I have had RLS for about 6 yrs now, I am also on an antidepressant for over 10 years.  Could antidepressants cause RLS?  Also, I have tried Requip .25 mg for two days with great results, then increased to .5 mg and felt nauseous, my heart was beating really fast, just awful. My doctor is sending me to a neurologist but says to stay on .25 mg for now. All of a sudden i feel symptoms in shoulders, arms and my face!! 

Could taking Requip have brought this out??   I am so discouraged and sad.

Medical Reply

The nausea often occurs with dopamine agonists. Taking the medication with food often helps. You should not increase the dose of Requip if the lower dose if working well. The spread of symptoms to other body parts may be caused by augmentation which is due to taking the Requip. Stopping (or lowering the dose) the Requip will usually reverse this problem.

Sent: Monday, March 13, 2006 7:02 AM
Subject: Restless Legs and drugs....

I am 54 years old and have had restless leg syndrome for forever. I have been prescribed Risperdal and have been on it for 20 years! Way too long for a drug. Recently, my head has been in a fog... I can't remember anything, can't concentrate and it feels like there is this intense pressure in my brain. I had a cat scan recently and everything came back normal. Is this just a side effect of being on that drug so long? And if it is, is it reversible??

I have tried all the other drugs and none seem to work like that one. The Requip actually works, but it causes me to have the worst hot flashes, so instead of being awake all night with jumpy legs, I am up all night with hot flashes.

Phyllis

Medical Reply

Hot flashes with Requip are very unusual. Perhaps changing to Mirapex or and anticonvulsant (like Neurontin) may be helpful.

Sent: Wednesday, March 15, 2006 12:51 AM
Subject: RLS and anticonvulsant medications?

Can one take Neurontin with Lyrica? Is there any problem with that? Does one drug tend to be more sedating than the other?

Irene

Medical Reply

They are similar classes of drugs and are rarely mixed together as they do the same thing. There is likely no harm to mix them, but mostly we use one or the other. Lyrica may be a little less sedating than Neurontin, but that can vary considerably from person to person.

Sent: Wednesday, March 15, 2006 2:16 PM
Subject: Does lithium make RLS worse?

I was hoping to find out if lithium causes restless leg syndrome to worsen? My sister was forced to take lithium, and she says that it is causing her restless leg syndrome to worsen. She says the pains are excruciating.

I don't know what this country is coming to, when a person is trying to tell medical professionals that they are mistaken about a drug and the side effects. Just because it hasn't been reported before, doesn't mean that it's not possible for someone to experience a side effect from a drug that other people have not experienced.

I'm just so glad that I do not have to depend on any medications at all. I myself have not even seen a doctor in about 5 years.

I have a great love for my sister, and I am worried about her, because they are threatening to put her back into a mental facility where she was severely beaten up three times by another patient.

Gloria B.

Medical Reply

Lithium has been known to worsen RLS. There are a few case reports to support this issue.

Sent: Friday, March 17, 2006 7:09 AM
Subject: RLS and quinine?

I have leg sensations throughout my life and have learned to live with them. But for the past couple of years I have been getting charlie horse in my hamstrings, calves and feet. Sometimes I have burning sensations on top of my foot. I have now heard about Requip and was wondering if that would help with the leg cramps. THank you for any assistance.

Charles

Medical Reply

Quinine helps leg cramps (it must be taken before the cramps to prevent them). Requip helps RLS but does nothing for leg cramps.

Sent: Saturday, March 18, 2006 12:52 PM
Subject: Sinemet, Mirapex, Requip & augmentation

I am a 64 y/o female and had minor problems with RLS for a couple of years before total knee replacement two years ago. This was easily controlled with a small dose of Sinemet at night. At the time of that surgery, I was prescribed Phenergan to keep my antibiotic down. My RLS became considerably worse and I began having symptoms 24/7 and increasing my Sinemet. I have since learned from the website how the Phenergan contributed to this and about augmentation. Since then my life has become a nightmare. I cannot sit through a movie, church service or even a drive across my small town. The jerking involves not only my legs but my whole body at times. My work involves some travel.

My doctor switched me to Mirapex about 6 months ago. After an initial bout with nausea, it worked well, with sleepiness being the only serious side effect until a couple of months ago. Then I began having symptoms earlier in the day and decrease in effectiveness at night. My doctor has now advised me to quit the Mirapex entirely and begin the introductory Pack of Requip. Last night, my first night of this, was a nightmare. I walked the floor most of the night and could not have gone to work today if it had not been a Saturday.

Is this going to get worse and is it okay to quit the Mirapex so quickly? What are the chances that I will have the same problem with tolerance and augmentation with this drug?

I apologize of the lengthy question, but felt some history was needed,
Nancy M.

Medical Reply

It is likely that you did develop augmentation with Mirapex. You may or may not develop it with Requip (although the chances are likely greater that you will now that you have developed augmentation with Mirapex). When going off a dopamine agonist (such as Mirapex or Requip), stopping it suddenly will definitely cause marked worsening of your RLS (as you have already noted).

That is still the correct way to do it, however, I normally add a painkiller to cover the increased RLS symptoms. You will need the painkiller until you can increase the Requip dose (slowly and usually one need 2-4 times the dose of Requip compared to Mirapex) to an adequate level to cover your RLS problems.

If the Requip also causes augmentation, then you will need to switch to a painkiller or anti-convulsant medication (or some combination of the two drugs).

A Reply from Nancy M.

Sent: Monday, March 20, 2006 7:39 PM
Subject: Re: Sinemet, Mirapex, Requip & augmentation

Thank you so much for your reply. An expert opinion is very helpful and gives me the courage to continue to try this.

If I can impose again--I am concerned that if I have augmentation again, will the RLS be PERMANENTLY worse?

Nancy M.

Medical Reply

With most cases (there are always some exceptions) of augmentation, once the dopamine drug is stopped, the RLS will return to baseline (like it was before you started on the drug) within a few weeks. It is quite unusual to have permanent worsening once the dopamine drug is discontinued.

Sent: Sunday, March 19, 2006 9:39 AM
Subject: Calorie Restriction Diet and cessation of RLS symptoms

For as long as I can remember I have had a mild version of RLS (irritating urge to move my legs, intense jerks just before drifting off to sleep, and apparently kicking in my sleep, although it did not wake me). Two months into a new diet I (and my wife) realized that I no longer had RLS symptoms.

It was a completely unexpected result.

When I went off the diet, the RLS symptoms returned. When I went back on
the diet, the RLS went away.

BACKGROUND ON CR DIET

Two years ago I began reading about a "Calorie Restriction" (CR) diet where you limit calories significantly while ensuring you get 100% RDA of vitamins and minerals. The reason for the diet is not weight loss, although that is an obvious side effect.

The reason for the diet is that in the animal species in which it has been tested for the last 70 years (mice, rats, dogs, yeast, worms, etc) it significantly lengthened the life span (equivalent to 120 to 150 years for humans) and the CR animals were more healthy than the controls throughout their lives.

There are on-going studies with rhesus monkeys and humans. Both are showing the expected health benefits. For instance, rhesus monkeys often get diabetes and die from the complications. That is happening to the control monkeys, but not to the CR diet monkeys. In January a paper was published on a human trial showing significantly less aging of the heart muscle for those on CR vs the controls.

It is too soon to know about the life extension in monkeys and humans.

The NIH, universities and various start up companies are pouring millions into finding why CR works in order to produce drugs that mimic the effects.

Here is a quote from the March issue of Scientific American (p 51):

"Restricting an animal's calorie intake is the most famous intervention known to extend life span. Discovered more than 70 years ago, it is still the only one absolutely proven to work. The restricted regime typically involves reducing an individuals food consumption by 30 to 40 percent compared with what is normal for its species. Animals ranging from rats and mice to dogs and possibly primates that remain on this diet not only live longer but are far healthier during their lives. Most diseases, including cancer, diabetes and even neurodegenerative illnesses, are forestalled."

Given those results, it does not surprise me that RLS symptoms disappeared when I adopted the diet.

I noticed that some of your readers mentioned various supplements that worked to relieve RLS symptoms for them. Others did not get this benefit. Perhaps the CR diet works because it focuses on getting an adequate amount of all known nutrients. I track some 25 nutrients. I also try to get them from the foods I eat, not supplements. We know so little about nutrients that supplements are at best a stop gap measure and should not be the primary source (junk food and pills do not a reasonable diet make).

So perhaps the calorie restriction is not critical, it's instead getting all the nutrients your body needs.

MY EXPERIENCE

Before starting the diet I set up an excel spreadsheet and figured out exactly what nutrients I was getting. I was way low in several, particularly calcium. I was not low, however, in iron which some research says can be a cause of RLS.

I stuck closely to the diet for 14 months. Then got off it for about 6 months. After a couple of months off it, I started getting the RLS symptoms again. In January I got back on the diet. Sure enough, a couple of weeks ago the RLS symptoms had disappeared.

MY DIET

There are only 2 rules to this diet:

1. Restrict your calorie intake significantly 2. Make sure you are getting 100% of the RDA (now called RDI and DRI) of all the vitamins and minerals.

I have a personal 3rd rule, which is to get those nutrients without using supplement pills to the extent possible. I only take a calcium supplement occasionally, and Vitamin D supplement in the winter (I live in Kansas which is at a high enough latitude so sunlight does not generate sufficient Vitamin D. And it is too cold, anyway).

So you can follow any diet you like - Pritikin, Mediterranean, Weight Watchers, McDougal, Ornish, etc. You can eat junk food. As long as you meet the two rules.

I limit myself to 1500 - 1600 calories per day. I am 5' 7", 58 years old, male, now at 133 lbs.

Unlike what you might see in press articles about this diet, I found cutting the calories no more difficult than changing any other habit.

Tracking what you eat is the downside of this diet in my opinion, but it is key to making sure you are getting the necessary nutrients and not eating too many calories. I think there is software to help out, but I just use an excel spreadsheet.

Cutting calories without tracking nutrients could be dangerous. Don't do it. That can lead to serious health consequences.

I track foods I eat and the nutrients they have using an excel spreadsheet and the website www.nutritiondata.com  I highly recommend this website even if you don't follow the diet if you have a question about what nutrients any food has or would like to see what food is highest in some particular nutrient. It has a great search engine and is tied into the Agricultural data base of nutrients.

MY RESULTS FROM THIS DIET

1. RLS symptoms completely disappeared two months into the diet

2. I dropped from 158 lbs to 133lbs (I limited weight loss to about 1 to 2 lbs per week by upping calories as needed - quick weight loss is not healthy)

3. My fingernails are stronger, don't break as much.


4. I have learned a tremendous amount about nutrients and foods.

5. I eat a much wider variety of healthy food. This comes about as you try to increase the amount of some nutrient while staying within the calories.

Who knew: kiwis are very good for Vitamin E, as are sunflower seeds and wheat germ; 2 brazil nuts give you more selenium than you need; Napa cabbage is great for zinc; spinach should be labeled as a multi-vitamin pill it has so many nutrients and so few calories; kippered herring gets you a massive dose of B-12; mushrooms, particularly shiitake mushrooms, are a wonderful source of B5 - pantothenic acid.

To my chagrin, however, I discovered that raw shiitake mushrooms can cause "shiitake dermatitis", which I never knew about until I got little red bumps that itched all over my feet, ankles, hands, and wrists. My wife, an academic reference librarian, tracked down an article that mentioned shiitake dermatitis in an Australian medical journal that described my symptoms to a T. So cook your shiitakes!

The limited calories do not affect my energy levels:

I continue to exercise regularly. Every morning I do calisthenics and weight lifting. On weekends I run 3 to 5 miles, swim 3/4 miles. In warm weather I take 3 mile walks several times during the week, under 15 minutes/mile.

To any readers of this: If you were interested enough to read all of the above, and still want to know more, feel free to contact me at phillips@kcnet.com

Bob Phillips
Stilwell, Kansas

Medical Reply

Thanks for your info. We will post this on our website for other RLS patients to view.

Sent: Sunday, March 19, 2006 1:17 PM
Subject: Tolerance to Klonopin

I have been on Klonopin m1mg for restless legs for a month, it works great. my question there are conflicting reports on how long it takes to develop tolerance to Klonopin.  What is your experience?

Medical Reply

It can take anywhere from a few months to 20 years. This is clearly a very individual problem that can vary widely. Klonopin has a very long half-life (30-40 hours) so that half of the drug is still present when you take the next pill and daytime sedation is a very significant concern.

Sent: Thursday, March 23, 2006 10:35 AM
Subject: Ambien long term

I went to a sleep doctor for insomnia. He told me at 72, I could take 3 ambien a week for the rest of my life,with no problems.  Does your experience with ambien agree with this?  I take melatonin for my restless legs 3 times a week.

Medical Reply

It is likely that you could take Ambien every night for the rest of your life and have no problems.

Sent: Monday, March 20, 2006 7:02 PM
Subject: Med. Change?

More Advice please? Thanking you in advance. Given the fact that I have had some success controlling my RLS w/pain and while taking Mirapex and some Ultram. Would you advice me to stop taking the Mirapex since my failed back syndrome is now being treated with Duragesic 50 mcg. Shouldn't the Duragesic take care of both conditions?

Bill P. in MD

Medical Reply

The Duragesic patch should take care of your RLS (it is a very potent painkiller and RLS drug) without the need of Mirapex. However, if you discontinue the patch, you should restart Mirapex (but gradually increase the dose as you may get side effects by suddenly restarting your old dose).

A Reply from Bill P.

Sent: Tuesday, March 21, 2006 7:40 PM
Subject: One more question?

Just wanted to ask a follow up question to the Duragesic patch concern. If one uses Duragesic Patch for failed back and for helping with RLS, how do i stop the Mirapex. Slowly or all at once?

Bill P. in MD

Medical Reply

It is usually better to stop it slowly but it is very likely that the Duragesic patch will cover all your RLS symptoms no matter how slow or fast you stop the Mirapex.

Sent: Tuesday, March 21, 2006 5:34 PM
Subject: My life with RLS and gambling and RLS.

I am thirty and have had RLS all my life. I have only understood what my problem was for the past three years. As a child my parents described me as being very hyperactive and very difficult to get to sit still. When I was a child at church my dad would sit me at the end of the pew and twist my ear when I started to shake. At school the teacher would frequently tell me to sit still because my shaking legs would make the windows rattle disturbing others in class. I also have ADHD and OCD so everyone would always look at these two issues as the base problem for my shaky limbs and insomnia.

When I was younger the insomnia was not an issue since I could get by with only a couple hours of sleep a night. After graduating high school is when I discovered what my adult life had in store for me. The problems insomnia has caused me to this point are overwhelming. Due to my other problems doctors were always telling me this sleeplessness I have is all in my head and that eventually I will fall asleep. I discovered that with my insomnia all the doctors did not treat it properly.

My RLS is so bad that it never stops and it only gets worse the longer I go without sleep. There have been times when I have gone up to 12 days without a wink of sleep. When I started to experience sleepless nights to this degree and when the doctor told me it was all in my head I started abusing drugs and alcohol to rest at night. Due to my OCD this quickly turned into a very destructive path to take. From the age of 19 - 29 I self medicated myself with either sleeping pills, pain medication, alcohol or marijuana. As I have gotten older I grew tired of abusing my body for the sake of falling asleep. Unfortunately I have discovered I will not sleep without the help of something.

Now that I was older (29) and wanted to do the right thing. I thought I could take meds responsibly. I found a doctor that believed me when I moved to California. After almost two years I have finally decided I can not take pills due to my past drug abuses. I have tried both non addictive meds and ones that can be habit forming. Regardless of the drug I will start abusing it causing it to become ineffective.

My last option I had was the new drug Requip. When I started to take it I also tried to take Xanax because the Requip was not enough by itself to allow me a good night sleep. I told the doctor about my past abuses and he agreed to work very closely with me if I agreed to tell him if the meds were becoming addictive again. He also told me about a side effect relating to excessive gambling and if I noticed anything like this to let him know immediately. I agreed even though it did not make any sense to me regarding the gambling.

Where I made the mistake is that I did not tell him I was OCD. I can control my obsessions to the point that there are not any huge problems with rituals but everything I do is a ritual and sometimes I need a little help to figure out when they become problems. The first couple months I was taking the Requip I had no huge problems. I was able to keep from taking the Xanax everyday and did not want to drink but when my dosage was increased everything fell apart. Within one week of having the dosage increased I relapsed severely and started abusing the Xanax real bad.

All my daily rituals increased to the point that life was unbearable. I had absolutely no control over anything. I wanted to kill myself but the only thing stopping me was my wife. She saw the abuse and talked me into stopping all the meds I was taking and wanted me to check myself into a drug program. Within two days of being off the Requip my life came back to me and I was able to control the rituals again. My entire life is a ritual an obsession which turned out to be a very bad thing for someone taking Requip.

At first I did not make the link between gambling and my OCD. I now know how important it is to inform your doctor of everything before starting any medication regardless of the connection. I am currently not taking anything for RLS and trying to just handle things with alternative methods. My life is horrible dealing with this condition. I can go over a week or more without more than a couple hours of sleep. I can not take any kind of pill so I do not know what to do. Is there anyone out there in my situation?

Thanks,
M.H.

Medical Reply

Your situation is somewhat unique, but then just about every case is unique is some way. Your history of drug abuse and OCD certainly complicates your RLS treatment.

The best choices of drugs for your problem would be Neurontin (or other anti-seizure medication if Neurontin is not tolerate or does not work well) in combination with one of the newer non-benzodiazepine sleeping pills (Ambien, Sonata or Lunesta). These newer sleeping pills have little to no addictive potential. The combination of these pills may provide you with relief from RLS and insomnia.

You may also consider adding Wellbutrin for your OCD. Although it is not the best OCD drug, it does not worsen RLS and may in fact help it.

Ultram (tramadol) is a painkiller with much less addictive potential and if you feel that you can use this on an as needed basis only, it may be helpful for your RLS. However, with your past history of addictive behavior, this drug should be used with caution.

Sent: Saturday, March 25, 2006 9:38 PM
Subject: RLS/Requip/gambling - Opposite effect?

I am a 49 year old female who has suffered from compulsive gambling for approximately 7 years and have had RLS for as long as I can remember. I was placed on Requip last November with very good results. Interestingly, I was able to stop gambling approximately 10 weeks after being treated for my RLS. I never associated the two until the recent press of individuals claiming gambling addiction with Requip.

Here's my question: Could Requip possibly account for my recent success in stopping gambling? I no longer feel the overwhelming urge and I can't think of anything else that has changed, as previous to December I had visited nearby casinos several times a week (or even day.) I have attempted to stop on many many occasions in the past with absolutely no success. It's now been 3 months and I don't even have the urge. Could it possibly have the opposite effect on an individual who has a gambling addiction before beginning the drug?

Medical Reply

It is very likely that a drug that could affect the brain and cause a gambling problem may also be able to reverse it. There is too much of coincidence that the gambling problem improved with the onset of taking Requip. You should report this side effect (even though in your case it is not an adverse one) to the FDA (your doctor will know how to do this).

Sent: Wednesday, March 29, 2006 1:49 AM
Subject: RLS and Restex?

I am 49 years old and I first noticed my RLS when I was in my twenties. I knew what it was because my mother and grandmother both had it. My grandmother slept on the hard floor even into her nineties because she found some relief there. My RLS was just a "come and go" thing for years, but now for the past 5 years or so it's here to stay! I have it every single night and I wake up and walk around the house, go up and down stairs and jump around at least 4-6 times a night. I used to be able to finally get some rest after 4:00 am, but now it comes back again in the early hours.

I am an American living in Germany, so I went to the German doctor and was prescribed RESTEX which worked beautifully for a while. After about a year it stopped working and I became worse so I stopped taking it. Restex has levodopa in it. I've dealt with the RLS for the past 10 months without medication, but it's getting to be too much.

Dayna F.W.

Medical Reply

Restex was the first RLS drug approved in Europe. The experts there claim that they do not see the amount of augmentation that we see here with levodopa containing drugs but I suspect that it occurs fairly often.

Requip and Mirapex are better drugs and now available in both Europe and the USA. You might want to see a doctor in Germany to start this drug.

Sent: Wednesday, March 29, 2006 2:41 PM
Subject: Requip and more energy.

I have been taking Requip, 1 mg for about 3 months. It has been the best 3 months of my life. Almost immediately, I began to fall asleep easily. I woke up earlier than usual, but I felt really rested. My history is constant complaints of depression, extreme fatigue and no desire to do anything but sleep. Since I have been using Requip, I get up each day with a desire to do something. If you only knew how unusual that is for me.

I cannot adequately describe the difference. I feel so well, I fear if it is just side effects from Requip, then it may go away. However, at times, I feel like I am loaded up with "uppers" during the day. The down side is, I am a lot more impatient and less tolerant. I have never used uppers, so I am just guessing about the feelings.

Is there any danger in using this medication if it is that stimulating for me?? By the way, I have stopped using Prozac. I do not need it.

Jean W.

Medical Reply

It is most likely that you are feeling better because you are now not sleep deprived as you are able to sleep longer and get better quality sleep. I am not sure why you are more impatient and less tolerant. This is not a common side effect of Requip, but anything is possible.

Stopping the Prozac may also have been helpful as SSRI antidepressant medications worsen RLS.

Sent: Saturday, April 01, 2006 6:50 AM
Subject: Restless legs syndrome better with a bar of soap?

Hi everyone with RLS!! This isn't medical advice, but believe it or not, you don't need any pills to help take care of your RLS. I have no idea why this works, but it does!! Put a small bar of soap in your socks, at bedtime. I use this remedy a lot in my profession when I work! I learned this from an individual I've taken care of in the past and have passed this info to numerous people, and the majority can't believe how such a simple and inexpensive trick with a bar of soap helps!!!

Hope it helps you!!!
Joan

Medical Reply

The bar of soap trick keeps surfacing every few months. We do know why and how this works; the placebo effect (also known as the sugar pill effect). If you believe something will work, then it often does work, at least for a while.

Sent: Saturday, April 01, 2006 6:11 PM
Subject: RLS new medications?

I just had a consult with a doctor who recommended some things I haven't seen before - galantamine, amantadine, mefiprestone (isn't that the 'morning-after pill'?), and bromocriptine. Any experience with any of these? I also have Bipolar for which I take Clozaril and Neurontin.

Alexandra H.

Medical Reply

Galantamine is an Alzheimer's pill and mefiprestone is one of "the morning after pills". Both of these have no known role (that I know of) in RLS. Amantadine does have dopamine actions and there are a few case reports supporting its role in RLS. Bromocriptine was used extensively in the late 1980's and early 1990's for RLS (with some success) but has been replaced by the newer non-ergot dopamine agonists (Requip and Mirapex which are much safer and effective for RLS).

Neurontin is often a very effective RLS drug but Clozaril tends to worsen RLS (as do most all other bipolar drugs).

Sent: Tuesday, April 04, 2006 10:12 AM
Subject: Worsening RLS after surgery?

A few weeks ago I started on Fentanyl 50 mcg/48hr. for RLS and a related spinal fusion pain. At that time, it was felt I could for go the Mirapex as the fentanyl would cover the RLS related symptoms. After only a few days the RLS returned as never before with an additional severe burning in my legs and buttocks. Unfortunately, at the same time the new pain management dr. put me on nortriptyline 10mg. and the new Lyrica medication 150-300 mg. per day.

I was at a quandary as to what happened. Could it have been the no Mirapex ( I started back on it after only 3 days without) the crawling RLS pain was gone but now I don't know if the few days without Mirapex has things going crazy in my legs or could it be the nortriptyline or Lyrica being the cause of the more than normal RLS burning. I have only been on the nortriptyline/Lyrica for two weeks when it all went wrong.

It sure seemed like the Lyrica was causing the severe burning as it started within 2 hours. of each dosage..(2x per day).  As of yesterday I have stopped both the nortriptyline. and Lyrica all at once. So far today, the burning is much less. I might add also that temazepam was started at the same time as the other new meds. but for sleep.

I would very much appreciate your input as to my new problem. My new treatment for back and nerve related pain has my RLS out of control and an all new severe burning in my legs and body.

Bill P. in MD.

Medical Reply

It is very likely that there are two reasons for you RLS worsening. The first is the spinal fusion surgery itself. Trauma to the body and especially the spine seems to trigger RLS in many people (we are not sure why, this is just an observation). Additionally, the nortriptyline (like most other antidepressant medications) tends to worsen RLS.

Lyrica, an anticonvulsant, actually has been used to help RLS, so I am somewhat doubtful that it is bothering your RLS.

Sent: Wednesday, April 05, 2006 11:10 AM
Subject: Anxiety with Requip?

I am 26 years old and I was just diagnosed with RLS. My doctor put me on Requip which lasted about ten days. I noticed I started to have a panic feeling. So she today I went to pick up another med to try called Mirapex. The doctor told me the panic feeling was a side effect of Requip.

Do you think Mirapex will do the same? I did not have any other side effects with Requip and it did take the RLS away once I got to the .5 dose. If this medication causes the same side effect what are some other options?

Medical Reply

Anxiety with Requip can occur but is a very uncommon side effect. Mirapex does work on the same dopamine receptors and may or may not cause the same problem (it is worth a try, just start with the lowest .125 mg dose).

If the dopamine agonists do not agree with you, then Neurontin (or other anticonvulsant drugs) or painkillers may work better for your RLS.

Sent: Friday, April 07, 2006 1:02 PM
Subject: RLS in children?

I have been reading about RLS and my son, who is only 5, wakes up crying in the night complaining that his right leg is hurting. We can always hear him thrashing about in bed and when we go in to check on him he is rubbing his leg. He gets very frustrated and it takes a good hour to get him settled down again. Has RLS ever been diagnosed in someone so young? This has been going on since he was about 6 months old. I would appreciate any thoughts or advice that you can offer.

Sharon Murray-Jones

Medical Reply

RLS can be diagnosed in sufferers as young as 2 years old. The youngest patient that I have diagnosed and treated is 4 years old (with excellent results).

Take your son to a pediatric sleep specialist (or neurologist, although many of them are not that familiar with RLS) and they should be able to diagnose and see if treatment is necessary and advisable.

Sent: Wednesday, April 12, 2006 8:01 PM
Subject: Treatment of Restless Legs?

I have had a severe case of restless leg syndrome my entire life although I didn’t know what it was until my late fifties. I quit drinking and using recreational drugs in 1980 and spent the next 24 years averaging two to four hours of sleep a night. A little over a year ago I started reading about RLS on the Internet and had a talk with my doctor. I tried Requip which worked for awhile and then I suffered from rebound and quit taking it.

I now take 1.5 mg of Mirapex and one 3 mg Lunesta. I have been averaging eight hours of sleep a night for the first time for as long as I can remember. My biggest problem is the slight guilt I feel for taking the drugs.

Thanks for the Web site. It has been quite helpful.
Mike

Medical Reply

The only comment I have is that you are wasting your guilt (save it for something more appropriate like eating high fat/calorie food). The drugs that you are taking are helping your problem and have little downside (unless you are experiencing side effects). Would you feel guilty if you took a drug to prevent ulcers or to treat diabetes?

Sent: Thursday, April 13, 2006 6:35 AM
Subject: My RLS treatment

I have suffered from relatively mild, intermittent RLS for 15 years. Over those years the particular symptoms wax and wane and often change from one episode to the next one. Generally if I lie or recline on my back after 5pm, say to read a book, I will start to feel the symptoms after 20 minutes or so. Because the syndrome is intermittent, I've tried to look for activities that correlate with its occurrence or non occurrence but without success.

About a year ago I discovered something I could do (besides getting up and walking) which almost certainly makes the symptoms go away. What I do is lie on my bed on my stomach with my head , shoulders and the top part of my torso hanging over the edge to the bed. Not very comfortable but I can achieve a state where no muscular exertion is required to maintain the position. Usually after ten or 15 minutes the RLS symptoms have disappeared and I can return to my normal sleep position in bed and go to sleep. The posture has the additional dubious benefit of draining my sinuses.

My off the top of my head theory is that the effect the posture has on blood hydraulics in my brain is the reason the posture works. I intend to experiment with other positions which might be more comfortable while still having my head lower than any other part of my body. I would be very interested to learn if any one else has had similar experiences.

Josiah P.

Medical Reply

We will post your letter on our website and see if others have experienced similar success with different positions. RLS is generally not associated with any particular position but rather with any rest position. It may be that you are stretching some of your muscles in your chosen position which somehow quells your RLS symptoms. Although your theory is as possible as anyone else's, there is no evidence currently to support your hypothesis (but you never know what the future holds).

Sent: Friday, April 14, 2006 1:31 PM
Subject: HELP--need some advise

I came across your site recently and am in heaven. I have suffered from RLS for years now, not knowing what it was. I thought that I was absolutely crazy. I never mentioned it to a doctor, because the only way that I could describe it was that my legs are arms were itching inside. I have told my girlfriend that I live with about it, and she would massage my legs often. The massages would give temporary relief, so that I might be able to drift off to sleep finally.

I would also be woken up in the night, by the "itching" or "twitching" and would not be able to go back to sleep. I would have to get up and walk around. This would happen once or twice a night. It has gotten worse over the years. I rarely sleep now, unless I take Tylenol pm at night. Then I have to sleep 8-10 hours a night, so that I am not groggy. Still, I wake up during the night, just not as many times.

Recently I went to a doctor, but I no longer have insurance so it was not a cheap visit. She gave me some samples of Requip. I tried it, and felt so sick the following day. I was sweating profusely. I am normally a "cold" person, often wearing a jacket during the summer. I was nauseated, and it did not help me sleep at night or take away the symptoms during the night or the day time. I contacted the doctor and was advised by her to quit taking the medication and to take some Benadryl??  What are your thoughts on this?

Are there any certain kinds of physicians you could refer me to, or a certain type of medication that I can request?  I have constant back pain, and have taken Vicodin off and on for the pain. It helps with the symptoms, but doctors are reluctant to prescribe Vicodin. The doctor I saw, I don't think that she was very familiar with RLS.

Any recommendations or advice???
Desperate in Overland Park, KS

Medical Reply

You have the classic symptoms of RLS and should be able to get virtually complete relief of your symptoms with medications that do not cause you problems. If you started Requip at the smallest dose (.25 mg) and had side effects then I would not use it again (however, if you started a higher dose, then restarting it at the smallest dose and slowly increase it as per our RLS Treatment Page). Another choice is Mirapex (in the dopamine agonist class) although there are many other types of medications that help RLS. You should see a sleep specialist or neurologist for help (but call first to make sure that they are well versed in treating RLS).

Benadryl makes RLS worse. The active ingredient of Benadryl is diphenhydramine, which is the same active ingredient in Tylenol PM! It only works by making you fall asleep so fast that your RLS does not have a chance to kick in. This drug has a very long half-life that accounts for next day drowsiness. RLS patients should avoid this drug.

Sent: Saturday, April 15, 2006 1:44 AM
Subject: Mirapex and Requip side effects?

I have been on Mirapex for about a year or more. I developed a bitter taste in my mouth, and nothing seemed to help. Eventually I tried going off the Mirapex and the taste went away. My doctor put me on Requip. However, now the taste seems to have returned. I also have greater urinary frequency and some incontinence. Have you heard of these symptoms before? Do you have any advice?

Restless in GR

Medical Reply

There have been very infrequent reports of problems with taste noted with Mirapex but none (so far) with Requip. There have been urinary complaints (such as yours) with both drugs.

You may want to change to Neurontin or a pain killer for your RLS control.

Sent: Sunday, April 16, 2006 11:09 AM
Subject: Different treatment for a 19 year old with RLS?

I'm 19 years old, recently diagnosed with RLS that has been occurring since I was about 14. My primary care physician prescribed me w/ Requip and I used the trial pack (noticed a different with the .5mg level), but I stopped after that b/c I was averse to taking medications at my age. However, the RLS eventually got to the point where it was bothering me again (due to extreme daytime fatigue) and I went to see a neurologist.

He prescribed me with Mirapex, working up to a .5 mg level 30-60 minutes before bed, (increasing .125 mg every 5 days as needed). I felt some relief with the .25mg, but still had some sensation and worked up to .5 mg, which feels just marginally better than the .25 mg level. He is now averse to going past the .5mg at my age, even though it isn't providing complete relief. I also have the problem of waking up 3-4 hours after sleeping with RLS symptoms and then waking periodically throughout the night and he says to just take another dose when I wake up. I also take 12.5 mg Ambien CR which helps me fall asleep due to insomnia, but doesn't really help in keeping me asleep.

I continue to have RLS symptoms into the morning and early afternoon. I think part of it may be due to my teenage circadian cycle (usually sleep at 2, wake at 10 [or later if I'm too fatigued]). However, he is reluctant to put me on 2x or 3x per day schedule at my age. Would increasing my dosage or how often I take help and be ok in this case, even at my age?

I know I shouldn't expect 100% complete relief, but I feel like I could still use more help. Being a college student and feeling tired all day due to terrible sleep is really having a major effect on my life.

A.M.

Medical Reply

First of all, most RLS patients should expect virtually complete relief of their symptoms with proper treatment. There is no difference in treating you at your age compared to how we treat older patients. We always give the correct amount of medication to resolve your RLS complaints.

Requip is generally less potent (on a mg basis) compared to Mirapex. Therefore, it is interesting that only .5 mg worked very well for you (which is equal to about .125 to .25 of Mirapex) yet higher doses of Mirapex do not help you now. Either your RLS has worsened over time (in which case you do need more Mirapex) or you are getting augmentation from the dopamine drugs (worsening of your RLS due to months of drug therapy). If you are having augmentation, then you will other classes of drugs to treat your RLS.

With current medications, you should be able to get complete relief of your RLS symptoms and sleep well. There are no valid reasons for withholding therapy at your age.

Sent: Monday, April 17, 2006 7:01 PM
Subject: RLS HELP

I found your website and wanted to contact you for help. When I was pregnant with my second daughter I was never able to sleep. I would lie in bed for hours and my legs would jump around all by themselves. I would hold back the jump as long as I could and to no avail bam a jump. I spoke with my doctor and she said I had RLS and it would go away after pregnancy. She was right to a point. I had 3 more children after that and suffered equally with all 3.

I recently had back surgery (dynamic stabilization, in Germany) my back is feeling better but my jumping legs are back in full force, more than ever before. The ONLY thing that seems to work is a scalding hot bath immediately before bed, and even then it sometimes fails. My doctor seems to think I am making this up or unsure if this is what I have. He tells me to leg exercises and don't drink caffeine. Well, I'm limited with the exercises since I am still in and will be in physical therapy for my back for the next 12 weeks.

Is there anything, anything I can do to relieve this. I don't get to sleep until 5 am and back up at 8am with 4 kids and my eyes barely open. I just cant live like this anymore.

Help PLEASE!
Heather M.

Medical Reply

Ask your doctor to prescribe Requip or Mirapex for you RLS. This should eliminate your problem (if not, check our website for alternatives to these dopamine agonists). If he does not prescribe one of these medications for you, then ask him for a referral to a doctor who can or find yourself another doctor. Relief is just around the corner.

Sent: Monday, April 17, 2006 7:19 PM
Subject: augmentation with Ultram possible?

I've been on 200mg of Ultram for 9 years now for daytime RLS. I take the Parkinson's disease drugs at night only because of side effects to cover my nighttime RLS. I've only taken regular drug holidays for the past several years. The first 2 days of my drug holiday, I need 3 doses of 7.5/750 vicodin to control my symptoms. The third day of the drug holiday, I don't need to take any vicodin until almost evening.

When I start back on the Ultram, I don't feel any symptoms coming on until evening. Within a few days, I start getting symptoms in the late afternoon. Within 3 weeks, I am back to my original dosage taken at the times I have always taken them. I have stayed at the same dose for 9 years. When I come off of the vicodin, I only have symptoms from early evening on. When I go back on the Ultram, my symptoms start to come back earlier and earlier. Isn't that augmentation and if so, what can I do about it?

I have had a lot of difficulty with the Parkinson's disease drugs- Mirapex and Requip didn't work by themselves so my doctor has me on Mirapex and Topamax (I also tried Neurontin but it didn't agree with me). The combination of these 2 drugs in the dosage that helps my symptoms also puts me to sleep. I can't take them at 6:00 in the evening.

What do you think is going on with the Ultram and what should I do about it?
Mary .

Medical Reply

Augmentation has been documented so far only with the dopamine agonists. However, a few RLS specialists suspect that it might happen with the synthetic painkiller, Ultram (tramadol). It seems as if this may be your problem. If you take only one dose of Vicodin per day (likely even 2 doses), there is almost no chance of developing tolerance or dependence on this drug. Therefore, you do not really need any drug holidays (the use of drug holidays is quite speculative anyway) and can use just the Vicodin and hold the Ultram for now.

Sent: Tuesday, April 18, 2006 7:05 AM
Subject: Requip replacing Mirapex?

My wife Peggy has suffered with RLS for many years.  She has been taking Mirapex for many years but it seems to be losing its effectiveness. She decided to switch to Requip. Yesterday, April 17, 2006, she started taking Requip - 3 pills. She got no sleep last night - legs and arms won't stop moving.

Questions:
1. How long before Requip becomes effective?
2. How can she get some sleep now?

Ted P.

Medical Reply

Requip works right away, as does Mirapex. However, your wife may not be on the correct dose of Requip. Generally, on a mg basis, Requip is only 1/4 to 1/2 as potent as Mirapex. Therefore, to equal the dose of Mirapex, she will need 2-4 times the dose of Requip. Also, since the Mirapex was not working that well, she may even need a higher dose than previously.

An alternative for now would be to take a painkiller (Vicodin, Ultram, etc.) before bedtime. This should take care of her RLS symptoms. If she still can't sleep, then a non-benzodiazepine sleeping pill such as Ambien may work very well in addition to the painkiller. Both the painkillers and Ambien should provide immediate relief, if taken in adequate doses.

A Reply from Peggy P.

Sent: Sunday, April 23, 2006 2:20 PM
Subject: Re: Requip

At the time I sent you the e-mail I was in dire straights, so I went back to .125 mg of Mirapex three times a day. I wasn't aware that I should have been taking higher doses of Requip. The situation has improved since I went back to Mirapex. Now I need to decide whether to try to switch to Requip at higher doses or just increase my dosage of Mirapex. I am familiar with the painkiller Ultram and the sleeping pill Ambien. I use them frequently.

A former pharmacist mentioned a low dose of Naltrexone would help with RLS. Have you ever heard this?

Peggy P.

Medical Reply

There is no right answer about what to do with your Mirapex or changing to Requip. Generally, I do not recommend changing drugs unless side effects become bothersome or if reasonable doses to not help. You do have room to increase the Mirapex (which would be my choice) before considering a change. Furthermore, as Requip is not as potent as Mirapex so you would need a much larger dose.

There is no data on naltrexone and RLS but as this drug is an opioid antagonist (it blocks the narcotic receptors rather than stimulating them as do the narcotics), it has the potential to worsen RLS.

Sent: Tuesday, April 18, 2006 10:05 PM
Subject: Mirapex not helping any longer?

I am a 48 year old female with RLS, and have had it most of my adults life. Three years ago, my doctor prescribed Mirapex, which was a God-send. Now, a little over 3 years later, my RLS is getting worse, and I seem to be working up a resistance to the Mirapex. My doctor moved me to Requip with little or no improvement. In fact, it seems to make the insomnia worse, so I spend the nights walking the floor.

I have tried combining the Requip with Ambien, Xanax, Trazodone, Elavil, (with no luck sleeping) and finally (by chance - dental surgery) Vicodin. The vicodin has worked wonderfully, but my doctor says it is "inappropriate" and will not proscribe it. I have also taken Klonopin by itself, but the RLS is too bad to actually sleep. Please help. I am living on 1 to 2 hours of sleep a night, and will soon be fired from work. I can barely function any more. My goal is to get back on the Mirapex as soon as possible.

So, I guess my questions are:
1) How long a drug holiday do I have to take before getting back on Mirapex?
2) If Vicodin is inappropriate, what should I take to sleep. I can not find anything else that works on both RLS and insomnia?
3) Can I take Requip and Klonopin together, at least for a short time?

Kathy R.

Medical Reply

A month or so off dopamine agonists (Requip or Mirapex) may help reset your dopamine receptors. However, starting the dopamine agonist again may (or may not) worsen your RLS with time. What may be helpful is to restart the dopamine agonist but keep it at a significantly smaller dose than previously.

Vicodin is not inappropriate for RLS. The problem is that most doctors do not realize that painkillers help RLS and work very well and safely if taken in low doses, even on a daily basis. Without this knowledge, most general doctors are afraid to prescribe narcotics on a daily basis. In people who do not have a personal history of addiction, there is almost no chance of developing dependence/tolerance to one or two Vicodin tablets per day. Ultram (tramadol) is another choice that some general doctors may be more willing to prescribe as it is not really a narcotic (it acts extremely weakly on one of the opioid receptors which likely does not account for its effectiveness for relieving pain or RLS) and is much less addictive.

Combining Vicodin with low dose Mirapex or Requip may work very well and keep your RLS symptoms under control. Alternatives include Neurontin and other anticonvulsant medications, but sleepiness and next day hangovers tend to occur in many patients.

If you resolve your RLS symptoms with the above therapy, you should not even need a sleeping pill (but if you do, Ambien or other non-benzodiazepines are better choices than Xanax or Klonopin, as the benzodiazepines can be habit forming and cause next day sleepiness).

Sent: Wednesday, April 19, 2006 2:17 PM
Subject: What to do next?

I will provide a brief history before my question:

1) I am a 49 year old female that has suffered with RLS for many years.
2) About 4 years ago I found out about this site, saw a neurologist and got started on Mirapex 0.125mg which provided me immediate relief.
3) Before too long I had to increase the dose to 0.25mg to get the same relief.
4) After awhile I found that I had to take the Mirapex earlier and earlier in the evening to prevent the nightly horror of restless legs.
5) Just recently the Mirapex hasn't been keeping the symptoms at bay and actually the feeling in my legs became worse than it ever was. I was trying to avoid taking additional Mirapex because I'm hoping to make it last my entire life and at this rate( i.e. having to increase the dosage every couple of years ) I'm afraid that eventually I'll have no where to go.
6) Having said that, I couldn't take it any longer and the last few nights I have either been taking 2 Mirapex at bedtime or one in the early evening and another at bedtime. It has done the trick. However I do feel tired but I'm not sure if the cause is the additional Mirapex.
7) So my question is : Am I doing the best thing by taking 2 ( 0.25mg ) and if so is there an ideal time span to take them?? And also do you think the fatigue could be due to the increase in dosage??

Thank you very much, you are doing a wonderful service by helping those of us who suffer with this and are dealing with a medical system that knows very little about it.

Sincerely,
Pam ( Nova Scotia)

Medical Reply

It does sound as if you are developing some problems with augmentation from Mirapex. If the augmentation is mild (only increased RLS symptoms that occur earlier in the day) then additional (of split doses) of Mirapex usually work well (as it sounds like they have for you, so far). As long as you do not have to increase the Mirapex dose too high (like over 1 mg or so), then it should not be too much of a problem.

Sedation can occur with Mirapex, but usually occurs after taking the medication. If you have increased sleepiness in the evening, then Mirapex may be the cause. However, if the sleepiness is occurring during the day prior to taking the Mirapex, then it is being caused more likely by something else.

Sent: Sunday, April 23, 2006 3:21 AM
Subject: Mirapex and compulsive behavior?

I have been treated for RLS for at least 6-7 years. I have had the symptoms all of my life, my brother and mother also have RLS but not to the degree of severity that I experience. My RLS is accompanied by PLMD. I have taken Neurontin, Sinemet, Klonopin, and Mirapex. The Neurontin was not helpful, the Sinemet helped for a couple of years, but developed side effects, and the Mirapex greatly decreased my symptoms.

However, the Mirapex caused another problem. I don't know if you are familiar with the study conducted at the Mayo clinic, with Mirapex causing compulsive behaviors. This may not happen to everyone but it certainly did for me. I developed compulsive spending and gambling problems, resulting in a lot of problems for me. My problem is now I need something to help my RLS.

What else is available for me?

Medical Reply

At first it was thought that the compulsive behavior occurred only with the higher doses used for Parkinson's disease, but we are now receiving a few reports of RLS patients developing compulsive behavior with the lower doses used for RLS. You should have your doctor report this problem to the FDA.

The next choice for treating your RLS would be low doses of painkillers. That include the narcotics (such as Vicodin, Darvon, etc.) or Ultram (tramadol). They usually work really well and are very safe when used in low dose.

Sent: Sunday, April 23, 2006 9:49 AM
Subject: Klonopin and tolerance?

I have tried Ambien, Lunesta, Sonata.  Nothing works. I take anti-depressant Lexapro.  My internist gave me Klonopin 1 mg for sleep and RLS.  I have been on it 3 weeks and its the best.

When I asked my internist about Klonopin stopping working, he said he has patients on Klonopin for years with no problem. The Klonopin has helped my restless legs at least 60%.  What is your experience about Klonopin tolerance?

Joan R.

Medical Reply

Klonopin has significant problems with causing tolerance/dependence. However, it may take anywhere from months to many years (even over 20 years) before these problems occur. Clearly this problem is very individual and many people can use this drug without any problems. However, you should be wary of tolerance/dependence occurring.

Additionally, Klonopin has a half-life of 30-40 hours which means more than half of the drug is still in your system when you take your next dose. Daytime sleepiness/decreased psychomotor function is very common and is usually not appreciated by the user.

Sent: Monday, April 24, 2006 10:21 AM
Subject: Mirapex side effects?

I have been taking Mirapex for about 3 yrs now for PLMS diagnosed in a sleep study. (I very rarely experience RLS symptoms - maybe 4-6 times per year - usually in a movie theater or long car ride. ) I had great difficulty ramping up the Mirapex to an effective dose. It caused a lot of pain in my legs, similar to muscle soreness, and occasional sharp stabbing pains in my hips. After several months, I got up to 0.5mg and have been there for almost 3 years.

About 6 months ago, I was experiencing a lot of daytime fatigue, so I increased the Mirapex to 0.625mg. I began to have numerous other symptoms as well - loss of balance, chest pain, severe fatigue, and eye pain. I went to the ophthalmologist with the eye pain and was diagnosed with optic neuritis and whisked off for a brain MRI to check for multiple sclerosis. The MRI was normal.

I went to an MS-specialist neurologist and told him of my symptoms. He said to increase the Mirapex to 0.75mg, which I did. Then things got worse. I had extreme dizziness and fatigue, my legs ached as if I had run a marathon. I had a hyperventilation episode with severe carpopedal spasms that put me in an ambulance to the ER. I spoke to my neurologist and he suggested increasing Mirapex to 1.0mg. When I did this, the fatigue and dizziness became unbearable and I could barely get out of bed for several days.

Then one day it hit me....all these crazy symptoms started happening with the increased Mirapex dosage. I reduced back to 0.625mg and two days later things got back to how they were originally - still having loss of balance and fatigue, but no severe dizziness, hyperventilation, etc. I am now reducing to 0.5mg and noticing an improvement in fatigue and possibly balance.

So - the question is - do these symptoms sound like they are being caused by the Mirapex? I can find info on Mirapex and hypotension-type symptoms, but nothing explains loss of balance (without dizziness) or optic neuritis.  I had a spinal MRI today to further investigate MS, but I am really starting to wonder if the Mirapex is causing it all.

Kathy

Medical Reply

You are correct in noting that balance problems and optic neuritis are not associated with Mirapex. However, anything is possible, so we cannot rule out Mirapex as the cause of these problems.

It is somewhat controversial whether or not to treat PLMS. Some RLS/PLM experts feel that PLMS are merely a curiosity and do not cause any real problems. You might want to discuss discontinuing your Mirapex (unless you are very sure that you have been doing better on the Mirapex, such as improved daytime energy, etc.) with your doctors. You can then see whether the balance problem resolves.

Sent: Tuesday, April 25, 2006 6:13 PM
Subject: RLS, PLM and tongue biting?

I've had restless leg syndrome for years, as has most of my family. About a year and a half ago my Doctor sent me for a sleep study. The study showed I also had severe sleep apnea (47 episodes per hour) and Periodic Limb Movement, (16 episodes during the same hour). So needless to say, I was given a CPAP and Mirapex.

Question: Since being on the CPAP at night I've started biting my tongue while sleeping, sometimes the tongue just feels numb at night. It may only happen once every two weeks or so.

This wakes me up immediately and causes a sore tongue for a few days.  Do you think this is a progression of the PLM which causes me to chop down on my tongue?
Or is this something else?

Steve

Medical Reply

It is fairly unlikely that the PLMS causes you to bite your tongue. Furthermore, most specialists would not treat PLMS at 16 per hour (even if they all cause arousals). Some sleep specialists do not treat even more severe PLMS. You may want to discuss with your doctor doing a trial of going off Mirapex and seeing if it makes any difference.

Sent: Tuesday, April 25, 2006 7:47 PM
Subject: Aciphex and RLS

Does Aciphex worsen RLS symptoms? I take Mirapex, but since stating Aciphex, the RLS seems worse.

Dodie C.

Medical Reply

There are no reports that I am aware of linking Aciphex (or any other PPI acid treatment medication) and RLS.

Sent: Thursday, April 27, 2006 8:44 AM
Subject: RLS treatment?

I take .25 Mirapex in the afternoon and .50 -.75 Requip at night. taking more Requip alone seems to make it worse.

1. Does this make sense?  Mirapex keeps me awake and Requip alone doesn't work. this combination is working pretty well.
2. is it ok to take this combination?
3. if I were to add Neurontin to Requip to see if that combo worked how much Neurontin would I add to 1.0 Requip?

Nancy

Medical Reply

Although Mirapex and Requip are fairly similar in many ways, individuals may respond quite differently to these two drugs. In your case, there is no reason not to combine the two drugs and take them at different times of the day.

If you are doing well, I am not sure why you would want to add Neurontin (it often causes sleepiness). But if you feel that you need something extra, then Neurontin starting at 300 mg and increasing every several days by 300 mg (to a total of 9-1200 mg) is what most RLS experts would recommend.

Sent: Friday, April 28, 2006 3:22 AM
Subject: Dialysis patient confused and needs help with severe RLS!

I recently (December 2005) had kidney failure. It came as a result of a hysterectomy gone bad which left me with 3 damaged organs and lots of abscesses. It took a 2 month hospital stay, a colonoscopy, and lots of antibiotics (IV) to get me back on my feet even a little. Drs. told me the antibiotics ruined my kidneys, but there is a slight chance of them recovering enough to get off dialysis or cut it down. I go twice a week now for 3 hrs. If this all wasn't "enough" I also developed a VERY strong case of RLS.

I asked my nephrologist for help but he said he "never heard of it." (He is from Egypt - don't they have RLS there?) Next, found a neurologist who is also a sleep specialist at our HMO hospital. He's better and knows what I'm talking about but he's very young and very new here in his profession. I told him on the first visit that I knew there were many drugs he could try but that I am a recovered alcoholic (30 years sober, but still have that addictive chemistry). So I cannot take any addictive drugs; I am simply very afraid of them. After I got sober years ago, I had severe migraines and got addicted to several of the prescription drugs they tried on me.

I started to see my sleep specialist about 6 weeks ago (and he is the only one I can see here; the others have closed practices). He started me out on Sinemet, (25/100) - 1 at 5pm, 1 at 10 pm. This is because my RLS was beginning about 5 so I couldn't make it thru dialysis in the evening or watch TV or rest at all. I was skeptical because of all I read and heard of this drug. Sure enough, within 10 days, I was having augmentation and 24/7 RLS. And it was awful. No sleep possible at all. The Sinemet would wear off about 3 or 4 am and then work no more.

My doctor then introduced me to Mirapex. Started me out at .125 mg. - 1 at 5 pm, 1 at 10pm. Week 2: 1 at 5 pm, 2 at 10 pm. Week 3: 1 at 5pm, 3 at 10 pm. All the while I was to stay on the Sinemet too. I finally had the RLS under control! But alas, my doctor now wants me off the Sinemet. He told me to withdraw slowly 1/2 pill at a time. I began this a few days ago. The result is RLS around the clock again. He says he is doing this to give me a drug holiday from the Sinemet, in case I ever need it again. But I would not WANT to ever take it again. I asked him to give me something in it's place as I withdraw but he didn't seem to be able to come up with anything. He then said yesterday, he is probably going to put me on Requip as he heard that Mirapex is filtered by the kidneys but Requip by the liver.

This is his big concern...ruining my kidneys further and not being able to find anyone with more knowledge than him about what is safe to use with me.  I sent him a link to your website and some copy and paste articles on the Parkinson Disease drugs. He seems to be learning more from this.

What would you suggest for someone like me? - Kidney disease (creatinine is about 3.6) and not able to take any addictive drugs. I have tried .5 mg of Ativan to help me sleep and 50mgs. of Ultram. But neither helped much with the RLS.

I know you're very busy but if you could possible take time to answer me, it would give me some perspective on my situation. And is you DO suggest Requip, what doses would you recommend? My RLS is very bad and I get so exhausted from it, I just cry and feel I'm going to "lose" my mind at times. Even tho I have survived so much else, this RLS is what's breaking the camel's back with me.

Thank you for listening. Sorry this is long. Felt it was necessary to explain what I did to you.

Sincerely,
Kathy S.
Age 59/Illinois

Medical Reply

It is unfortunate that not all sleep specialists/neurologists are aware of the pitfalls of using daily doses of Sinemet for RLS. This drug should be avoided for RLS patients except for intermittent RLS symptoms.  It is best that you taper off of the Sinemet while increasing a dopamine agonist (Mirapex or Requip).

Mirapex is filtered/metabolized by the kidneys so is often not used for dialysis patients. However, there is one research paper that showed that when given after dialysis, one dose would last almost 24 hours. This medication can be given to dialysis patients, however it may be easier to use Requip that gets metabolized (broken down and excreted) through the liver. With adequate doses of Requip, your RLS should be easily controlled. I would suggest that you start at .25 mg of Requip twice daily and increase the dose by .25 mg every 5-7 days until you reach the lowest effective dose.

Another choice would be Neurontin, however it tends to be somewhat less effective for RLS and has more side effects than Mirapex or Requip.

Sent: Friday, April 28, 2006 10:33 PM
Subject: Manic Depression & RLS?

I have been taking 300mg of Wellbutrin 2x/day & 300mg of Lithium 2x/ day for manic-depression for several years. I've recently learned that I have RLS. My neurologist prescribed .5mg/night of Requip for the RLS, and all seemed to be well.

However, I learned that Requip and Lithium tend to counteract each other. When I take Requip to help my RLS, it doesn't really work, since it's "canceled out" by the Lithium in my body. If I boost the Requip dose to 1mg/night (per my doctor's suggestion), my RLS symptoms are more at bay but my depression gets slightly worse. But both medications are important for my health!

Is there anything I can do?

I've tried a rogue's gallery of anti-depressants: Prozac, Buspar, Seroquel, a half-dozen others but the Wellbutrin and Lithium combination seems to work best for my manic depression. I'd prefer not to revisit my anti-depressants again. Now I'm faced with a challenge: either continue with my low-level depression and help my RLS or improve my mood, and forget about the RLS. Taking my meds now is kind of fruitless since they both cancel each other.

Ack!
Brian B.

Medical Reply

Lithium has been documented to worsen RLS and that may be the problem in your case. Requip is not known to block the effects of Lithium or vice versa. I am not sure why Requip worsens your depression (dopamine agonists are actually thought to improve depression, so go figure). As your lithium is very important, you must continue that and use other medication.

It may be worth a trial of Mirapex. As that drug is also a dopamine agonist, it may cause similar problems with your depression, but you never know until you try it. As it may be helpful, it is worth a try.

If that does not work, then treatment with Neurontin (or other anticonvulsants) may be a good choice. However, the narcotics or tramadol may even be a better choice as they are very effective and in low doses (which are used in RLS) quite safe.

Sent: Friday, April 28, 2006 10:33 PM
Subject: Antidepressant medication for RLS?

I take Zoloft, Synthroid, and Prilosec. I have been taking Klonopin for RLS and the doctor just changed me to Elavil. Is this a safe choice? I have glaucoma also. Will Elavil cause weight gain???

Gilda D.

Medical Reply

Elavil (as with most all other antidepressant medications) tends to worsen RLS and thus has no role for treating RLS. Requip or Mirapex are the drugs of choice for RLS. If these drugs do not help your RLS, then there are many other drugs that can be effective.

Sent: Sunday, April 30, 2006 6:34 AM
Subject: RLS Question?

I have been diagnosed with RLS and would like to describe my symptoms as well as ask you if you think I have RLS? For several years now I have been having leg pain and tightness. It feels as if my legs are swollen but to actually look at them and see swelling if a different story, so all I can say is that they LOOK swollen. During these severe episodes with my legs, I also have some weight gain and urinate less. It seems to begin in my right leg and behind my knees.

This begins early on in the day (mid-morning). I then started getting this creeping-crawling feeling in my legs at night when I would lie down. I am wondering if you think that I do indeed have RLS and if there is such leg pain and discomfort that goes along with RLS as well as the crawling feeling? My doctor recently put me on Requip and the lowest dosage upon beginning the starter pack caused my ankles and legs to feel terrible almost the next day.

When I started the next higher dosage of the started pack the discomfort went away and I had some really great days with my legs. I am now on the green colored pill which is the 1 mg and my legs haven't been as good now. My doctor has written me a prescription for the 2 mg once I finish taking the 1 mg I also have poor veins and I have noticed that my toes sometimes turn red/purple. My feet get either hot at times or cold, When they get cold, it is mainly to the touch. Quite often at night while I am sleeping, I would move my legs as in to make a tent ( feet flat on the bed and knees bent up).

So, my questions are: do you think I have RLS? And, is there leg pain, tightness associated with RLS? Please HELP!!

C.B.

Medical Reply

It sounds as if you do have RLS but you may have some additional non-RLS problems (like the weight gain and decreased urination). The pain may or may not be associated with RLS but the tightness is a common RLS complaint.

I am not sure why you are continuing to increase your Requip dosage. You should stop at the lowest dose that resolves your creepy-crawly feelings and urge to move your legs. Going to higher doses can only cause problems (side effects with the medication) while adding no additional benefit.

Sent: Sunday, April 30, 2006 8:13 AM
Subject: RLS and pregnancy help needed!!

Hello, I am hoping to find some help, I have severe RLS. It affects me every night, not once in awhile, I was put on Requip thru my doc at counseling sort of meds management only, no tests etc.  I found out now that I am pregnant at 43.  Everything I have read says NO Requip. I am high risk as It is and would like to know If you can recommend any dr. who may understand this condition enough to try and help?

Neither my doc at counseling nor GYN seems to get It.  I CANNOT even fall Into any kind of sleep whatsoever.  I am clueless as to what to do without Requip, and very frightened of the stress this is already causing as I just miscarried a few months ago.  I tried going to sleep a couple times without the Requip but the leg spasms and urge to move had me In tears! as well as being exhausted.

The biggest drawback is that I have Medicaid Insurance.  Not very popular with any doctor.  I am considering not going through with the pregnancy because I cannot get help and I cannot continue using Requip knowing the risks.  I feel like I am going to lose It, I want to do what's best for myself and my unborn but have run Into a wall of people saying "tough It out" not happening...3 days of no sleep not even an hour or 2 had me off the wall,  as well as not being healthy for my pregnancy.

S.T.
Buffalo, NY

Medical Reply

The two drugs of choice for pregnant RLS patients are the narcotics methadone and oxycodone (low dose). Both are available generically so should be covered and not too expensive. My preference is methadone as it has been used a lot (in much higher doses) for pregnant heroin addicts and seems to be reasonably safe.

If one of these narcotics does not completely resolve your RLS symptoms (which is very unlikely as they really work great to relieve RLS symptoms) then you can add Ambien (which is not yet generic so may not be covered as well) to help you sleep.

All the above drugs are pregnancy category B drugs which are considered reasonably safe for pregnancy.

Sent: Sunday, April 30, 2006 4:22 PM
Subject: Restless Leg and Periodic Limb Movement and Insomnia

I take Requip for RLS and PLMD and also have terrible insomnia. It is so bad that I hate to go to bed because I know that I could have a really bad night-only 3 to 4 hours of sleep total. Could RLS and PLMD be related to the insomnia is this something totally different. My doctor is sending me for a sleep study. Will that give my doctor enough information to know what to do?

Carol

Medical Reply

If the Requip is at the correct dose and you do not have any more RLS symptoms, then it cannot be accounting for any current insomnia problem directly. However, after years of not sleeping well, you may have been conditioned to sleep poorly.

Usually Requip (at sufficient doses) takes care of PLMS that may be interrupting your sleep. The sleep study should be able to determine if they are still a problem (or if any other sleep problems exist that may be affecting your sleep).

If the sleep study does not find any other sleep problems, then treatment with one of the newer sleep drugs (Ambien or Lunesta) would help your insomnia.

Sent: Monday, May 01, 2006 11:31 PM
Subject: Have you ever heard of this?

Hello, I am an 18 year old male that was placed on Requip today. I was placed on Requip to treat a very strange sleeping problem. Since birth, I have rocked myself to sleep with a smooth, repetitive, back and forth "swaying" motion. I will typically do this for about an hour before ceasing movement and hopefully falling asleep.

My psychiatrist seemed to think that this was somehow linked to RLS although I am not so sure. I was wondering if this is a known problem among others and if it is, in fact, related to RLS.

Jeremy D.

Medical Reply

Rocking back and forth is only part of RLS when it is done on a voluntary basis to relieve RLS symptoms (in place of walking or other movements).

Sent: Thursday, May 04, 2006 8:35 AM
Subject: Tramadol

I have been on a combination of Tramadol/Ultram 50 and hydrocodone 5 mg since last November for daily RLS. Initially the doctor prescribed Tramadol during the day and I would take Tramadol 100 mg 3x a day and 1 hydrocodone 5 mg at bedtime.  I also have fibromyalgia... and increased RLS during the spring through fall months. The doctor suggested taking more of the hydrocodone during the day in addition to the Ultram when experiencing fibro flares instead of adding another medication.

Have had a sleep study and now wear a CPAP mask for sleep apnea.  However, sleep was still a problem so the doctor prescribed Ambien CR last month and it seems to help.  I was reminded that it might be helpful to alternate between the Ultram/hydrocodone... so I just completed a week of hydrocodone and began the week of Ultram.

I have been experiencing more RLS sensations recently .... two weeks ago while on the Ultram/Lortab regimen - one evening full body RLS which was resolved by taking an additional Lortab. Honestly I think this was directly related to the farmers spraying fields with liquid fertilizer containing anhydrous ammonia throughout our area...

Last week on the Lortab only, I woke one morning with RLS in my arms and one night after being asleep for two and a half hours woke with RLS in the legs, both times taking the Lortab calmed the RLS...

My question is regarding the warnings of taking Ultram with other opioids, like I am, guessing hydrocodone is an opioid, during the increased fibro days is this something I should be concerned with in the warnings that this may be related to possible seizures?   Also, If I take the Ultram only it would be 400 mg a day on a good day which is about the limit...

Do you have alternative suggestions to this treatment protocol?   My experience with dopamine agonists, anti-seizure and other medications I have been prescribed to treat RLS is that I cannot tolerate the side affects and continue working.  My early experience was the Ultram did not work as affective at night, this week will be my real first test of this...

Sincerely,
Hazel S.

Medical Reply

You will have good and bad days with your RLS and require different amounts of medications. Taking one hydrocodone per day should not lead to tolerance or dependence problems. Ultram (tramadol) should also not cause tolerance or dependence at 2-3 per day.  Ultram works extremely weakly on the opioid receptors (it is believed that its effect on pain is not through its action on these opioid receptors, but some other action) so we are not really sure whether when added to opioids (Lortab, in your case) that it will increase the chances of opioid addiction. The seizure warning is usually only relevant for patient's with underlying seizure disorders or who take other drugs that may lower the seizure threshold.

As you have trouble with alternative medications, it is likely that your current regimen is fairly reasonable.

Sent: Thursday, May 04, 2006 4:36 PM
Subject: Requip and RLS getting worse

I recently had to start with a new doctor for my severe RLS and it hasn't been smooth sailing. I have been successfully taking 150mg Ultram each night to completely eliminate my RLS. I then take 37.5 mg Seroquel and manage a very good, full night sleep. My new doctor did not like the Ultram and felt I needed to try Requip again even though I told her I had tried it and Mirapex in the past with no luck.

Since I mentioned I had only gotten up to 1.5 mg of Requip she insisted I hadn't taken enough and that I might need 4-5 mg at night. I am now in the process of titrating up and I am to the 2 mg a night level. She asked that I occasionally reduce my Ultram intake to try to ease off of it. If I don't take 100 mg of Ultram first, the Requip (in any amount) seems to induce the RLS 30 minutes later! At my second visit with this doctor I mentioned that I felt the Requip was bringing on my RLS because it happens 30 minutes after the dose whether it is 7 PM or 9:30 PM. All she said, repeatedly, "That's impossible".

I agreed to continue to try the Requip to a higher amount because until it is logged into some medical records somewhere, no MD. will give me "the evil opioids". After that visit, I wanted to go elsewhere but I knew the next doctor would want to do Requip too.

The more Requip I take the more severe the RLS seems. Does it really make sense to continue to up the dose?  Is it likely that more will stop the symptoms? I also need to add that even with the continued Seroquel, my good nights sleep has gone out the window too. I wake up anywhere from 1 AM to 3 AM and cannot fall back asleep until it's time to get up. Very frustrating to say the least.

I feel my only recourse is to go along with her until she accepts that Requip isn't for me but I would just like to hear from you if you feel my experience is possible. I just want to know I am not crazy.

Mahalo nui loa,
Devi from Honolulu

Medical Reply

Although your experience is unusual, it does happen. For those of us who have large patient populations with RLS, this phenomenon of worsening with a dopamine agonist happens from time to time. Some may find that changing to another dopamine agonist (Mirapex in your case) might still be successful and worth trying.

Generally, if it ain't broke, don't fix it! I would have left you on the tramadol and leave well enough alone. Unfortunately, many doctors are not comfortable with using low dose painkillers and may want to fix treatment that does not need fixing.

Sent: Friday, May 05, 2006 7:04 AM
Subject: RLS in face?

I am having a very difficult time and thought you might be able to shed some light on the situation. I heard about you from a friend on the WeMove.org discussion board.

On January 2nd of this year I started to have a tingling feeling on my forehead. It started suddenly that day, but was pretty mild; a minor annoyance that I described to my husband as "weird." I assumed it would go away but over the next few days it got worse and worse. I still have the sensation every single day, and it has grown stronger and more intense. It varies from a tingling (not pins and needles, but more of a tickle), to pressure/tightening, to skin-crawling, to pulling, to itching. It is worse some days than others but I rarely have a mild day. Also, it has spread to my eyebrows and rarely effects my nose as well. I have had an MRI, a CT Scan, been to an ENT, two neurologists, and of course my regular doctor, and none of them could diagnose anything.

I began to suffer so much depression from this sensation that I started to take Prozac. Within 4 days of taking the Prozac, I started to have a burning/aching in my left leg. I immediately stopped the Prozac, but over the next 10 or so days the sensations spread to both legs, affecting the thighs as well as the calves. It turned from aching to severe creepy crawly, tingling, "gotta move", like there were worms crawling deep inside the muscles. I knew it was RLS and my PCP confirmed. I have been taking Klonopin .5 mg twice daily and my legs have improved a ton since stopping the Prozac…now I just have minor symptoms. However, my face is terrible.

My questions (finally) is this: Can the sensations in my face be related to this RLS? Can a person get RLS in the face? I've read that it's possible.

Thank you SO much for any help you're able to give. I am at my wits end!

Medical Reply

RLS can occur anywhere in the body but it is much more unusual to occur in the face (I have seen a couple of cases). If the feeling is similar to that in your legs, comes on with rest, then it is likely RLS.
You may want to consider changing to Wellbutrin from Prozac as it is likely that the Prozac (as with most antidepressants) worsen/cause RLS symptoms.

Although Klonopin may help RLS, it causes significant sedation (which may not always be obvious) and the dopamine agonists (Requip or Mirapex) are more appropriate.

Sent: Friday, May 05, 2006 7:45 AM
Subject: Requip

I just started taking Requip for RLS. As a recovering alcoholic and drug user I'm always concerned with taking meds. It is my understanding that Requip is non addictive. Then I read about a doctor suing the drug company for 14 million, claiming Requip gave him a gambling addiction. The incidence here is very small I realize, but still scary. Is Requip as safe as it appears in the ads or should I be a bit leary of taking it?

Sincerely,
John L. F.

Medical Reply

Requip is very safe and definitely non-addictive. All the reported cases of compulsive behavior occurred with the higher doses used for Parkinson's disease (and then there were very few cases). I have heard from a few RLS patients who have gotten compulsive behavior from the lower doses of dopamine agonists used for RLS, but that is even rarer than with PD.

All medications can cause rare side effects but that should not stop you from taking them.

Sent: Friday, May 05, 2006 10:57 AM
Subject: Acceptable % saturation of iron for RLS patients?

My mom is a dialysis patient who has very bad RLS. They said that her serum ferritin level is 145-150 which is acceptable. After looking at your site and some other web resources, my question is, "What is an acceptable % saturation of iron for an RLS patient?" I am not sure if the number they gave me was her saturation level or not. I know that when they do her blood tests, it is never a fasting test which may be a way to get more accurate results, is that true?

My mom has had two IV iron sessions for low hemoglobin which helped tremendously. She went from monthly transfusions for her anemia to two transfusions in two years. Her RLS has gotten increasing worse as time goes on. She does receive some Epogen at the Dialysis Center but I don't think this is the same as IV iron, is it? My mom has very bad health but she is pretty stabilized right now and actually able to enjoy life a little. The doctors say she probably has a couple of years left. I just wish her and my dad could get more sleep so we could all enjoy this rare time when she is feeling a little better.

Andrea

Medical Reply

RLS is very common in dialysis patients (up to 50%). The ferritin level is the most sensitive test for iron deficiency so you should make sure that it is above 45 (the % saturation is less sensitive).

Epogen stimulates the bone marrow to produce more red blood cells and does not affect iron levels.

Requip (metabolized in the liver, so not that much of a concern in RLS patients) is a good choice to treat her RLS symptoms otherwise.

A Reply from Andrea

Sent: Monday, May 08, 2006 6:52 AM
Subject: Re: Acceptable % saturation of iron for RLS patients

Thank you so much for getting back with me so quickly!!  I do have a couple of more questions, however, if you don't mind. Could you give me the acceptable numbers for RLS patients on theses tests: Serum Iron, Serum Ferritin, TIBC (Total Iron Binding Capacity).

I know that the Serum Iron test should be done in a fasting state. Any tests my mom has done in dialysis are never fasting. Would it be a good idea to get a lab to do the above tests for her when she is fasting? I just want to make sure her results are accurate.

Thank you again. You have been a god-send!!
Andrea

Medical Reply

Serum iron levels do not have to be fasting. We do not use normal values for the serum iron levels or TIBC (for RLS purposes) but rather use the % iron saturation (which depends upon both of the serum iron and TIBC levels). The % saturation should be over 20% or else iron supplementation should be considered.

However, the serum ferritin level is a much better indicator of iron stores and RLS treatment. Our goal is to reach a level of over 45-50, however serum ferritin levels of less than 18-30 respond much better than higher levels.

Sent: Friday, May 05, 2006 9:53 PM
Subject: Help for daytime RLS symptoms?

I went to a new doctor and he tried me on alprazolam (Xanax). I have to say that it really helps at night. It makes me drowsy, but not too drowsy in the mornings. He also tried me on something called gabapentin 100 mg. He said it was the lowest dose. These medications are helping me at night, but I get no relief during the day. I work at an office job, so I sit most of the day. I get up and stretch my legs as often as I can, but still no help.

Is there something that you could suggest for me that I might be able to try to help with the daytime symptoms?  I had to go back to the doctor last week, and he told me to stretch my legs. Hmm.... I really don't know why I didn't think of that, ok that's me being sarcastic. I have tried that and it helps for a few minutes, but then no relief.

Does anyone know what causes RLS yet? I know that there are medications that can trigger the symptoms, but is weight a factor also? Are there certain foods that make symptoms worse.

Thank you so much for your help,
Paula

Medical Reply

Requip or Mirapex are the drugs of choice for daytime RLS symptoms. As Requip was a problem, Mirapex would be the next choice. Daytime RLS symptoms can be relieved by movement (stretching, walking, etc.) but if the symptoms keep coming back and prevent you from working, relaxing or performing sedentary activities, then it must be treated with medications.

We are getting closer to understanding the causes of RLS but still do not know exactly what is going on. Weight is not a factor. Some RLS patients find that certain foods (ice cream, carbohydrates) seem to worsen their RLS. However, that represents a very small minority of RLS sufferers.

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