Patient letters on RLS symptoms and remedies- Page 99

 

Kicking RLS/PLMD Patient



Sent: Saturday, December 17, 2011 9:31 AM
Subject: Oxycodone and gabapentin

I am a 65-year-old male and have had RLS day and night for over eight years. I am currently taking 15-mg. of oxycodone four times a day. I have been taking it for two years and with fairly good results. My problem is that it lasts only five hours instead of the six hours as marketed. In other words, I go crazy for an hour (longer in the evening) four times a day.

Iíve mentioned this to my doctor and he recommended gabapentin (Neurontin) along with the oxycodone. Iíve tried the other frontline medications such as Mirapex, Requip but stopped due to either augmentation or daytime sleepiness.

While your RLS Treatment Page says that gabapentin has minimal side effects, other reported side effects of depression or thoughts of suicide frankly scare me. This time of year I am already struggling with seasonal blahs. Is gabapentin effective at a low dose? What is the average dose when taken with oxycodone? Can it cause depression at a low dose?

Marv K.

Medical Reply

You dose of oxycodone is actually getting to the high range (I like to keep the total daily dose to a maximum of 30 mg and most need only 5-20 mg per day) and you should be cautious as tolerance and dependence may occur. Although oxycodone is touted as lasting up to 6 hours, it typically lasts for 3-4 in most patients. That is one of the reasons that I prefer prescribing methadone which usually lasts 8-10 hours.

Gabapentin/Neurontin may sometimes be effective at low doses (in which case, the side effects tend to be mild) but most patients need medium to higher doses. This drug is very poorly absorbed from the intestines so giving higher doses often only adds a little extra medication into the body. The newer drug, Horizant results in a more predictable absorption of gabapentin (pro-drug) that produces better blood levels of this drug. It is also formulated as an extended release tablet which provides more prolonged control. Depression is possible but I have seen this happen only very rarely with this class of drug. The risk of suicide is a class effect (shared by all anticonvulsant medication) but I have yet to see this side effect in my patients.

Lyrica is another choice which is similar to gabapentin and Horizant as it works on the same receptors. As it is not yet approved for RLS (and thus may not be covered) and more expensive, we typically recommend trying Horizant or possibly gabapentin first.

A Reply from Marv

Sent: Sunday, December 18, 2011 7:34 AM
Subject: Re: oxycodone and gabapentin

I guess Iíll try the gabapentin and see how it goes. Only one physician in my clinic system (Mayo) can write a prescription for methadone. I get tired of having to explain things again to yet another doctor.

You stated in your response, ďyou should be cautious as tolerance and dependence may occur.Ē This is something I struggle with every day. Am I getting the heebie-jeebies because of the shorter half-life or is it due to a problem with tolerance or dependence? The oxycodone (15-mg. four times a day) does a good job in controlling my RLSóthe problem is that it doesnít control it long enough.

The Restless Leg Syndrome Foundation stated in its ďDiagnosis and Treatment in Primary Care (2008)Ē that, ďtolerance and dependence [is] possible with higher doses of stronger agents [opioids], especially those with shorter half-life.Ē If I understand it correctly, it seems to be saying that unless the treatment is proportionate to the severity of the restless leg, tolerance and dependence is a possible result. In other words, by not prescribing strong enough opioids in the beginning of treatment the patient may end up with a tolerance or dependence problem down the road. Is this your reading?

Marv K.

Medical Reply

You are looking for a concrete guidelines for the use of opioids and they are not that exact. It is very hard to say whether tolerance is occurring currently in that with tolerance, you need higher doses to get the same effect. In your case, the opioids still works well but rather the oxycodone just does not last long enough which is most likely due to its short duration of action. It is impossible to guess at which dose you might become tolerance/dependent upon the oxycodone but at your dose you are at higher risk of this happening eventually (although it may never happen at your current dose or even at somewhat higher doses).

Also, there is no way that giving more potent opioids earlier in the course of treatment would stave off tolerance as tolerance just appears after a long period of using high doses of opioids. This is similar to saying that someone driving without a rear view mirror is at high risk of a car accident. However, that person may never have an accident and even if you increase his risk but removing his side view mirror, he may still beat the odds and not have an accident.

Too bad that it is so difficult to get methadone in your medical system as it might resolve many of your issues.


Sent: Tuesday, December 20, 2011 4:58 PM
Subject: Benzodiazepines and opioids for RLS?

I wanted to know if its OK for a patient to take benzodiazepines and opioid medications at the same time to combat RLS and PLMD. Many physicians seem to have strong views about the two medications used at the same time for RLS and PLMD. Can you tell me more about this?

James S.

Medical Reply

Opioids do help RLS (but not necessarily PLMS) and are often the only medication that relieves some patientís symptoms. Benzodiazepines do not treat RLS symptoms but rather help RLS patients fall asleep despite being bothered by their symptoms. There is always a concern about adding 2 depressant type medications together. They can worsen problems like sleep apnea and possibly even depression. As such, the non-benzodiazepine sleeping pills (Sonata, Lunesta, Ambien) are preferred as they do not cause respiratory or other depression problems.

Having stated the above concerns, there are patients (especially younger ones) who do well on a combination of benzodiazepines and opioids. This can vary so these drugs should be prescribed on a case by case basis and monitored appropriately.


Sent: Wednesday, December 21, 2011 7:51 AM
Subject: RLS and Antidepressants

I have multiple health issues along with the RLS. My RLS is fairly well controlled on a low dose of gabapentin but I really struggle with depression. I currently take 10 mg. of Paxil. My psychiatrist wants to increase the Paxil or start me on another antidepressant (also an SSRI). Because of the RLS I am reluctant to do that but am willing to try.

Could you tell me how soon I would be able to tell if a new medication is affecting my RLS. I understand that it takes weeks for an antidepressant to be effective and wonder if it takes the same length of time to know if it affects the RLS.

Sandra H.

Medical Reply

If the SSRI is going to worsen RLS, it will do so with the first few doses. It may take 4-7 days with a long acting medication (such as most of the SSRIs) as it takes that long for peak levels to be achieved. Wellbutrin is an RLS friendly alternative but is unfortunately not always helpful in many patients.


Sent: Wednesday, December 21, 2011 4:28 PM
Subject: Hormones and RLS?

I am taking Lo Lloestrin fe. Since I have been on it (I have changed birth control pills) I have had a lot less RLS. I have even not taken my pill (Mirapex) a few times to test it and I have not had it. Does the birth control affect it positively? I have only had it once in the past month, and it was very mild.

Karen

Medical Reply

Hormones often affect RLS. However, usually they have a negative rather than a positive effect such as in your case. We do not really understand why this occurs but the hormone effect is very common.


Sent: Sunday, December 25, 2011 11:27 PM
Subject: Coming off Madopar

I have been on Madopar for the past 4 months. This has given me much relief at night so that I get 4-5 hours sleep. The problem with Madopar is that my RLS became a very frustrating issue all day every day. I cannot sit still without my legs Ďstartingí then I resort to medication during the day as well. PM I take 200 mg and during the day I would have 50 mg about 3 or 4 times a day.

My dilemma is that on Christmas Night (last night) I had had a few drinks and decided not to take the medication with the alcohol. I went to bed and slept and when I woke in the morning there was no sign of restless leg. It is now 6.30 pm and I still have not needed to take any tablets. Iíve had no restless legs all day.

Can I just stay off Madopar if my legs are OK? I thought that I should wean myself off them but today has been great. Please let me know what you think of this. All strange but itís been fabulous not having these jumping legs all day.

Joanne C.

Medical Reply

Madopar contains levodopa and is similar to Sinemet here in the USA. This drug is no longer recommended for daily use to treat RLS as it causes augmentation (a worsening of RLS which typically results in the earlier onset of symptoms amongst many other problems-see our website for more details). Stopping the drug is the correct therapy but patients would get marked worsening of their RLS for many days and would need alternative therapy to control the symptoms.

Since you are off the medication and doing well, I would advise you to stay off it. If you need medication in the future, see a doctor with more expertise in RLS who can prescribe drugs that are less likely to cause worsening of your RLS.


Sent: Wednesday, December 28, 2011 12:30 PM
Subject: Sedorum for RLS?

Hi there my granddad is a heart patient with RLS for the past few years we have tried each and every medicine for his cure but all efforts went in vain he is also a patient of high blood pressure, COPD, IHD, hypertension. He has been on medication for over a decade now but all goes wrong. He can barely sleep, can hardly walk and has so much stiffness and restlessness in his legs that keeps him awake and in pain 24/7.

I was just going through the Internet and found SEDORUM a natural supplement. My query is weather he can take this supplement with all the other medication he is using or is there anything else we are missing. If you can provide any good solution we and our family would be thankful and great full to you. As you esteem solicitation would deeply be regarded.

Malik K.

Medical Reply

The product SEDORUM is touted on their website to help RLS. However, other than testimonials claiming to have benefited from this medication, there is not a single scientific study that has demonstrated any benefit from this product. I would not recommend wasting your money or time on this product but rather have your grandfather see a doctor who understands how to properly treat RLS and he should do well with therapy that won't affect his other medical problems.


Sent: Wednesday, December 28, 2011 6:54 AM
Subject: Problems with ropinirole for RLS?

I have had RLS for years. I am presently taking ropinirole 4 mg at night. It works, but after I take them I am so sleepy I cannot function. I have to take them at least by 7pm. I usually go to bed about 11pm but wake up at 4am everyday and cannot go back to sleep. My present problem is I now have RLS 24/7. Is there ANYTHING else that I can take?

We are soon going to travel south to our winter home. Riding in the car makes it worse. I'm concerned that I will be in agony the entire trip.

Susan K.

Medical Reply

Your problem is that you are experiencing augmentation which is a worsening of RLS from taking a dopamine agonist drug (Requip). This problem is becoming more and more common with the use of dopamine agonist drugs like Requip and Mirapex. Unfortunately, increasing the dose of Requip will provide relief for only a short time after which your RLS will get increasingly worse.

There is a way to treat this problem but most doctors are not at all familiar with this issue let alone treating it. Most RLS experts would suggest getting off Requip but this is very difficult to do (symptoms get markedly worse for several weeks or longer) and therapy with potent opioids (methadone, oxycodone) is often necessary.


Sent: Saturday, December 31, 2011 4:20 AM
Subject: What to do about DAWS?

I have been taking Mirapex for about 10 years. At first it worked very well, but afterwards I can only say that it was the best of all the medications I tried. Now I find that it is next to impossible to get off Mirapex. I have been reading more and more about dopamine agonist withdrawal symptoms (DAWS) and wonder why this issue is not highlighted more since it seems to affect a quite a large percentage of Mirapex users (20-25%).

My personal experience reflects what others have been saying - trying to get off Mirapex is worse than any RLS experience I ever had. Am I doomed to stay on Mirapex for life or do you have some miracle suggestions that will help us from this living hell?

Art B.

Medical Reply

It is not clear from your letter that your problem with stopping Mirapex has anything to do with DAWS. That withdrawal syndrome has only been fully described in one medical article and dealt only with Parkinsonís disease (PD) patients. It is not known (which does not mean that it cannot happen, only that it has not yet been described) if this occurs in RLS patients who typically take much lower doses than PD patients and are chemically very different (PD patients have decreased dopamine in the brain while RLS patients have normal amounts of dopamine).

Furthermore, all the cases of DAWS (which were 19% of the patients studied) occurred in patients with severe impulse control disorders that occurred from the dopamine agonist (which was the reason that the dopamine agonist was tapered). I have seen only a few possible cases of DAWS in my large RLS practice and this so far seems to be an uncommon problem in RLS sufferers (but certainly needs to be further investigated with proper medical studies).

What makes this diagnosis even more difficult in RLS patients is that most of the symptoms that occur in DAWS (anxiety, depression, agitation, irritability) are the same ones that occur when a dopamine agonist is stopped or tapered in an RLS patient (especially ones who are experiencing augmentation from the dopamine agonist). Stopping the dopamine agonist causes a marked worsening of RLS symptoms which of course causes all the above symptoms which may simulate DAWS.

Therefore, it is much more likely that you are experiencing simple dopamine agonist withdrawal resulting in worsening RLS and this needs to be treated. A good RLS specialist can take care of this problem easily. However, most doctors do not have this expertise so make sure that you see one who is familiar with this problem.


Sent: Monday, January 02, 2012 12:57 PM
Subject: RLS (PLM)

I've had PLM for about 8 years now. I used Requip for about 4 years with good result but felt fatigued during the day so my doctor switched me to Mirapex. Mirapex has been fantastic but recently I have had a lot of problems with irregular heart beats and skipping beats. I spend couple of sleepless night and got off the Mirapex and the heart problems went away. 1-hour after taking the Mirapex my heart was flop flopping drastically and did so all night and into the next day.

After realizing the cause of the heart issued the doctor switched me to Neurontin but it does absolutely nothing except make me dizzy. I started with 300 MG the first night 600 the second and 900 the third night. That was last night and it is now almost 3 PM and I am still dizzy (although it is finally getting better).

What is the next step? I've tried all the recommended vitamins and eliminated caffeine and sugar near bed time... I need help... I need sleep!

Two other things should be noted. I went back to Requip and it had the same effect on my heart although it did cure my restless legs and smoking pot also helps but the drug testing at work prevents me from using this option. It's really sad that the least offensive treatment is illegal!

Mark

Medical Reply

Cardiac arrhythmias (heart beat irregularities) are very uncommon with dopamine agonists but clearly can occur as in your case.

The first issue is whether you have PLM alone (PLM can often occur without RLS) or in addition to RLS? PLM alone are tricky to treat and the need to treat them is very controversial. The only real way to monitor treatment is to perform a repeat sleep study (very expensive) or the more cost effective home actigraphy (a sensor on the ankle that can calculate the amount of PLM during sleep). Even so, the need for medication is very controversial and many RLS doctors would recommend not treating pure PLM.

If you also have RLS that need treatment then the treatment is more straightforward. Neurontin/gabapentin is an alternative drug but does not get well absorbed and dizziness is one of the most common side effects especially at doses that you were given (it would have been better to increase by 300 mg every week rather than every day). The new drug Horizant is much better as it gets better absorbed (then turns into gabapentin) and is a slow release pill. Lyrica (acts upon the same receptors as gabapentin) is another good choice.

If the above treatment fails (for RLS), then opioids are the next choice. They do not work as well for PLM (dopamine agonists like Requip and Mirapex are the best for PLM followed by the anticonvulsant drugs like gabapentin, Horizant and Lyrica).

Marijuana works well for RLS but is illegal and may cause lung damage (not to mention many other possible problems but has not been studied at all for RLS).


Sent: Wednesday, January 04, 2012 7:48 AM
Subject: Requip and RLS problems?

 Iíve been on Requip for over a year (it seems to be losing its effectiveness somewhat) and now am combining that with Horizant. Iíve tried tapering off of Requip to see if Horizant alone will work but I canít seem to get off Requip entirely and Horizant doesnít seem to work while Iím on any dosage of Requip.

So, Iíd like to wean myself off Requip entirely to see if Horizant alone will work. What is the best course of action to do this? Iím thinking about suggesting to my doctor taking pain killers for a while then, once Iím off Requip entirely, going back to Horizant to see if it works hopefully. I like being on a once-a-day pill.

A big concern for me is constipation and addiction from painkillers and knowing which one is right for me.

Joe M.

Medical Reply

The problem with stopping Requip is that once the body is used to a dopamine agonist, it will react violently when you try to stop it. This reaction will last several weeks or longer. You are correct in that pain pills (opioids) are then necessary to treat this dopamine withdrawal period as Horizant is not even close to helping during that time. Once the withdrawal period is over, Horizant may work better but many RLS patients may need more than the 1 tablet (like 2 or even 3) that is approved by the FDA.

Even when you are doing better, you may still need a small dose of opioids to control your RLS symptoms.

A Reply from Joe

Sent: Wednesday, January 04, 2012 7:18 PM
Subject: Requip and RLS problems?

Oh my! I'm 66 and know I'll probably have to be on medication to control my RLS the rest of my life. But what is the best medicine to use for the next 25 years or so: Requip or Horizant and opioids? What do you recommend that I do?

Joe M.

Medical Reply

There is no correct answer as to what is the best drug to be on for many years (and yes, most RLS patients with moderate to severe disease must take medication for life). This varies from person to person and must be individualized depending upon tolerance and effective of each drug, the development of augmentation and several other factors. Often, combination therapy with 2-4 drugs is necessary to keep the dose of each drug at a lower level or to make each drug more tolerable.

In my large population of RLS patients, I use many different combinations of drugs and very few patients end up on similar therapy. Part of getting to the optimal therapy is the art of this treatment combined with the science (understanding the half-life of each drug, side effects, effectiveness, etc.). It typically takes a well informed RLS specialist working together with the patient to arrive at the optimal therapy. Unfortunately, most doctors are not that knowledgeable about treating difficult RLS cases.

A Reply from Joe

Sent: Thursday, February 16, 2012 9:14 AM
Subject: methadone use for RLS

My sleep doctor thinks the next step for me to control my RLS is to go off Requip (o.5 mg twice daily) and use methadone.

Actually, Iím scared to death to use a narcotic for fear of becoming addicted to it and the dangers associated with the drug. I also have concerns about constipation as I have that now with Requip.

What is the recommended dosage for methadone? How can I keep from becoming dependent on it? Do I continue to use Requip if Iím on methadone.


Joe M.

Medical Reply

There are many different ways to accomplish getting of Requip.

My technique (which may differ from other experts) is to stop the Requip cold turkey then add methadone at 5 mg, 1-2 tablets up to three times daily as needed. Of course, the lowest dose that relieves symptoms should be used but this may only be found by trial and error. The RLS initially will flare up dramatically upon stopping Requip but with time (a few weeks to a couple of months), symptoms will decrease and less methadone should be necessary.

When monitored by a doctor knowledgeable about using methadone for RLS, tolerance/dependence and addiction should almost never occur. Constipation is one of the most common problems but can be treated with OTC fiber, Colace and MiraLax (this works great and is very safe). Sleepiness/grogginess also may occur so the patient should be careful in the first few days to not drive or do other activities that require vigilance until they see how they react to this drug.


Sent: Friday, January 06, 2012 9:41 AM
Subject: Drug Holiday

I have had RLS for about 3 years. I only have it at night when I lay down to go to sleep. I have been taking Mirapex for the same amount of time, starting at .125 mg and moving up to .5 mg which I take now. I have been on that dose for a year now and over the past 6 months it has started to work less and less. I would like to try a drug holiday from it (which I have never done) and then get back on it at the same dose and see if that helps rather than just up the dosage. Do you recommend taking opioids or Requip during the break? If opioids, which one.

Taylor W.

Medical Reply

Your problem is a little more complicated than you realize. The problem you are experiencing is augmentation which is a worsening of your RLS symptoms from taking a dopamine agonist (Requip). Your idea about a drug holiday is partially correct but the holiday must be permanent.

Stopping the Requip will cause a marked increase (like 10 fold) of RLS symptoms and very potent opioids (methadone, oxycodone) are typically needed to treat this worsening that may last several weeks or longer. Anticonvulsant medications (Horizant, Lyrica, gabapentin) may be added to decrease the amount of opioids needed after a few weeks and may even be able to totally replace them eventually. However, most doctors are not very familiar with treating augmentation and getting off the dopamine agonist can be very difficult.


Sent: Monday, January 09, 2012 6:22 AM
Subject: Requip and ED?

I wrote to you about a year ago regarding RLS. I'm a healthy 59 year old male and have had moderately severe RLS for over ten years. I currently take 1mg of Requip twice per day. Over the past several years I have begun to experience mild paresthesia in my lower extremities and mild to moderate ED. There seems to be a causal relationship to increased dosing over the past few years. A current physical exam reveals nothing unusual.

Could Requip cause ED? If so, can you recommend an alternative therapy that would not cause ED?

Rod F.

Medical Reply

Although it is certainly possible that Requip could be causing your ED and paresthesia problem, those would be very unusual side effects for that drug. The only way to prove it would be to stop the Requip which would then markedly increase your RLS. You could take strong opioids (like oxycodone) for that test period but most doctors (especially Canadian ones) would not be too eager to prescribe those potent drugs for that test (or likely anything else related to RLS).


Sent: Monday, January 09, 2012 8:00 AM
Subject: PLMD, Sinemet CR, and weight gain

I have tried Mirapex and Requip for RLS and PLMD, and it worked great except it caused me to have a rash and itching. I was switched to Sinemet CR, and it works well for PLMD and RLS, except I am gaining about a pound per week since I have started. Is there anything effective that doesnít cause weight gain? I am a 46 year old woman with moderate-severe symptoms of PLMD and RLS.

Beverly W.

Medical Reply

Sinemet is no longer used on a daily basis for treating RLS as it tends to cause augmentation (worsening of RLS due to taking this drug) in most patients who use it.

Your other choices for medication include the anticonvulsants (gabapentin, Horizant, Lyrica which may also cause weight gain but mostly water weight) and opioids (which do not cause weight gain but clearly have other issues).


Sent: Monday, January 09, 2012 9:43 PM
Subject: Please help

I have had RLS for the last seven years, except it was very infrequent, maybe once or twice a year. Within the last year it has sky rocketed and I now experience it daily! It runs in my family and my mother also takes Mirapex daily. She was much older than I when she had to start daily medication. I just turned 40 and I have no idea what sparked this new daily occurrence of RLS. I am really struggling with the sleep deprivation and now I am even getting Restless Arm Syndrome as well!

Do you have any idea what could have sparked such an increase in RLS activity? Also, I am taking Mirapex 0.125 MG at bedtime and it is not working very well. I have tried taking OTC sleeping pills (diphenhydramine 50 mg) too. It just seems to be getting worse rapidly. What medication would you suggest I might try?

Pam H.

Medical Reply

Your question is much too difficult to answer based on the information in your email letter. There are many possible causes of worsening of RLS and it is not clear which one (or ones) may be responsible in your case. Augmentation is always possible while on Mirapex but this typically does not occur often on small doses like your .125 mg daily.

Also, Benadryl (diphenhydramine) tend to worsen RLS so you should stay away from it (download our RLS Medical Alert Card which contains a list of all those RLS unfriendly drugs).


Sent: Tuesday, January 10, 2012 8:22 AM
Subject: RLS MEDS

I have been taking Neurontin for my very severe case of RLS along with other meds to work in conjunction with the Neurontin. However, I noticed that I have been slowly gaining weight over the past 6 months and now am 17 pounds heavier. I believe it is from Neurontin based on all the literature. However, I have not been able to find applicable information regarding RLS and the use of Topamax. Do you think this could be a viable option for me?

Leisa L.

Medical Reply

There have been a few studies using Topamax for RLS with some success but Neurontin/gabapentin has been much more extensively studied. I have used Topamax in a few cases with mixed results but it is certainly an option.


Sent: Tuesday, January 10, 2012 9:10 AM
Subject: Long time Mirapex use

I have been on Mirapex for about 18 years. It is the only medicine I have used for RLS and have had to increase the dose over time and am now taking .50 mg morning and evening. As long as I take the pills in a timely manner I am fine and my symptoms are kept at bay. Is there any problem with this schedule? The only other meds I take are Mobic for arthritis and Actonel. I do not sleep very much but it not because of RLS.

Donlei

Medical Reply

If you have only had to increase the Mirapex slowly over the past 18 years it may still work for you for several more years. The odds are that you may be developing augmentation (a slowly progressing case) and that down the road, you may need to get off Mirapex. It is impossible to predict when this will happen (or if it even will happen) but it is likely that this may become an issue within the next decade or so.


Sent: Sunday, January 15, 2012 2:39 PM
Subject: Serum ferritin levels

My 8 year old daughter was diagnosed with RLS. She is the first in the family and we are very much at sea how to help her. Her serum ferritin level is 31. We are giving her a multivitamin with 15 milligrams iron and half an iron pill with 13.5 mg iron. Should she take more?

And the second question: we are exploring other diagnosis and the only thing we came up with as an alternative is PANDAS. She had strep just before her RLS symptoms appeared, three months ago. Is there a simple way to differentiate btw PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and RLS?

We are going to see a neurologist in Children's Hospital in Boston in moths time. Too long to wait to start trying to do something.

Petar

Medical Reply

A serum ferritin level of 31 is fairly reasonable in an 8 year old although we do like to get that level over 50-75 in adults. However, once the ferritin level gets into the 30's, it is quite hard to increase the blood levels with oral iron therapy. The decision as to whether to continue iron therapy and how much to take should only be made with the doctor who is supervising this therapy by checking blood levels of ferritin (and perhaps even iron).

Although there are some symptoms that overlap between PANDAS and RLS (such as insomnia), the two conditions are completely separate. If the meets the criteria for RLS, then that is what she has. The only concern is whether the diagnosis of her RLS is correct (does she really fulfill all the criteria definitively). In children, it can often be difficult to obtain the information necessary to confirm the diagnostic criteria with additional testing such as a sleep study (to demonstrate increased periodic limb movements) or by having a parent or sibling with RLS (which is not present in this case).

The neurologist at Children's Hospital may know RLS sufficiently well to help confirm the diagnosis of RLS and institute treatment if necessary. However, not all neurologists are that knowledgeable about RLS and that is even more of the case for pediatric RLS. You might want to check to make sure that the neurologist who you are going to see is well versed in diagnosing and treating childhood RLS and if not, you may want to see someone who is (like another neurologist or sleep specialist or even one of the few pediatric RLS specialists in the country).


Sent: Friday, January 20, 2012 11:34 AM
Subject: Medication change with RLS

My husband has severe RLS, it is worse as he has gotten older (he is 65 years old). We are patients at Kaiser in Sacramento, he has a good Neurologist who is very willing to work with him. He has tried so many meds over the years...Klonopin, Mirapex, all the Parkinson's disease drugs. All these had way to many side effects, many did not work. He recently tried Requip, which seemed to work for a short time. He took it for about 6 months before being unable to tolerate the side effects. He is very slender and lost way too much weight, had abdominal problems and many other problems.

We weaned him very slowly off the Requip but now he has had to up his dosage of Norco: (10/325...3 per day). The only thing that works well and consistently are the opioids and he is now taking 5/day. His doctor will raise the Norco limit to 6 but we are wondering about taking all the acetaminophen. Right now he is able to get a 3 month supply which helps in us having a life. We have been told if he tries anything higher (like oxycodone, morphine, methadone etc..) he will only be able to get a 30 day supply and have to go to the doctor's office, hand carry a hard copy of the prescription to get it filled? This is another consideration as we live quite a ways away from the Neurologist and often are out of town. We are willing to go through all the problems, if it helps his RLS and health significantly.

Is there any plus to taking one of the higher opiates besides not ingesting all the acetaminophen? Is there any greater relief when using OxyContin/morphine/methadone etc? Are there more problems with functioning normally throughout the day on the higher opioids? Is it possible to take a Norco during the day and a higher opioid at night? What are the procedural problems with a mix like that? Is there any opioid that you would suggest that might be better than the others?

Donna N.

Medical Reply

Although all opioids typically work well for RLS, I (and many other RLS experts) have found that methadone seems to be the most effective of the opioids for most (like 80%) of patients with severe RLS. The methadone usually has fewer side effects, is better tolerated and has the advantage of lasting 8-10 hours per dose. Norco (hydrocodone) generally is only effective for 4-6 hours so dosing must be more frequent and makes this drug much less convenient to use. Oxycodone also is effective for only 4-6 hours so is not as good a choice as methadone (but does not contain acetaminophen).

I do have patients who take Norco in the daytime (when they are more active and may need a drug that has a quick onset) as they may not need the prolonged action as much. However, most patients find that the methadone works so well that they donít want to take other drugs (of course, there are lots of exceptions to that rule).

It is definitely an issue that methadone and oxycodone need to be brought to the pharmacy with a paper prescription and cannot be called in. However, I have my patients set up a FedEx account and send it by 3 day delivery (which used to be $12 but may have just increased to $23) which makes it more convenient. A law was passed last year to make it possible to send even schedule II drugs (methadone, oxycodone) by electronic prescriptions and I am about to set that up in my office. I do not know when or if Kaiser will be on board for those more convenient electronic prescriptions that will go directly to your pharmacy and ovoid the need for traveling to your doctor for a written prescription.


Sent: Friday, January 20, 2012 5:46 PM
Subject: Treatment for my RLS

Last July 2011 you kindly gave me your advice and I am hoping you will be able to provide some further guidance. Last summer 2011 when I attended a rheumatologist with regard to my temporal arteritis (Since Dec 2011 I am no longer on the prednisone that I took for 18 months) he told me that my body pain was a classic case of fibromyalgia and that I should indeed continue to take the amitriptyline 20mg nightly for the fibro as prescribed by my GP. He confirmed that I also have osteoarthritis especially in the feet and neck/upper cervical area.

Recently I am finding times that my RLS symptoms are worse again in the evening/nighttime. Having RLS 24/7 for many years means that I take my medication around the clock and this totals 4.5mg Requip over the 24 hours and 200 tramadol over the 24 hours. Tonight at 9.30pm I took my Requip 1.5mg and 100mg tramadol. At 11pm I went to bed and I took my amitriptyline and a zopiclone 7.5mg. My symptoms arms and legs went into overdrive by 11.30pm and it is now 1.30am and I can only now feel the symptoms start to subside.

Things are pretty miserable what with continuous overall body pain, and what is fibro and what is arthritis I am at a loss to know. I have also been taking citolapram 20mg for 2 years and would be reluctant to give this up as I did not realize that my mood was low until it improved. My GP feels that because of lack of sleep and also the fibro that I need to take an AD. I have been on Requip for 4.5 years and the tramadol was added 2.5 years ago.

I do understand that the citolapram and the amitriptyline and not good drugs to take with RLS. However I've been on the citolapram for over 2 years without any obvious ill effect. I've been on the amitriptyline for 7 months and it appeared that I was going to be fortunate in that it was not causing any great problem. It could be that this past week is just a bad spell for RLS symptoms or is it possible that after 7 months there could be a negative reaction to the amitriptyline.

With fibro/arthritis I often want to rest, but with RLS it is difficult to rest, and it seems that the tramadol I already take does not help with the body pain. Or maybe it does, maybe it would be much worse without the tramadol.

Also the zopiclone as well as the amitriptyline does not appear to help much with my sleep, I am getting about 5/6 hours compared to the previous 3/4 hours.. Actually, my GP last year got me to try Circadin instead of zopiclone and it was useless. GP would like me off the zopiclone completely.

Do you have any suggestions with regard to promoting longer sleep. Also if the amitriptyline could be aggravating my RLS should I increase my RLS meds, or try something instead of the amitriptyline, though GP seems to think amitriptyline... is the way to go for fibro.

And if my sometimes increased RLS symptoms could be augmentation what would you suggest as alternative treatment and in what dosages, from my present Requip and tramadol, bearing in mind that GP is RLS uneducated and unlikely to be aware of augmentation and will have no idea of how to deal with this. Indeed I reckon that anything stronger than tramadol could be a no-no.

Betty R.

Medical Reply

It is very clear that you are suffering from augmentation (RLS 24/7, symptoms already spread to the arms, etc.) and a further increase in RLS medication while help for a short while then simply add fuel to the fire making the augmentation worse. Even here is the USA, most general doctors and even specialists (neurologist, sleep specialists) who see lots of RLS cases are not that familiar with augmentation and do not recognize it often and donít know how to treat it. However, as you have already mentioned, to treat the augmentation you must get off the Requip but that will not be possible without the aid of a potent opioid (which the doctors in the UK typically will not prescribe).

Given your limitations, I would suggest having your doctors prescribe Lyrica (pregabalin) which is a very good RLS and fibromyalgia drug. It has no generic so may be more expensive but if it works for both of your problems, it would be worth it. Gabapentin is another choice (assuming that you have not already tried it) but does not work as well or as reliably as Lyrica.

It is hard to say how much your antidepressant drugs (citolapram and amitriptyline) are bothering your RLS. The only way to figure this out would be to stop one or both for a week (donít do this without your doctorís supervision) and see what happens. Increasing the amitriptyline may help your sleep a little but could have adverse effects on your RLS. There is s new antidepressant drug here is the USA (approved only for fibromyalgia but may not bother RLS that much) called Savella (milnacipran) that may be a better choice for you (if it is available in the UK).

 A Reply from Betty

Sent: Friday, January 20, 2012 10:08 PM
Subject: Treatment for my RLS

When you say augmentation (RLS 24/7 and symptoms in arms), I should make it clear that I had RLS 24/7 and in arms for several years before I started to take medication 4.5 years ago. i.e. For as long as I can remember, say 30 years, I have always had it 24/7 and also in my arms, and despite medication it has never really been fully covered.

Would you still consider that I have augmentation and if so:
1. Do I stop the Requip cold turkey
2. What dosage of Lyrica should I take, remembering the vastly increased RLS symptoms from stopping the Requip.
3. Can I still take the tramadol with the Lyrica.
4. Are you suggesting that the citolapram is replaced with the Savella for depression purposes and that it has the bonus
of being beneficial for the fibro.
5. If I commence Lyrica do I stop the amitriptyline.
6. what sleeping aid would work better that zopiclone

So for RLS, Lyrica would replace Requip, continue with tramadol. If my GP is willing to consider something stronger than tramadol what would you suggest. - Bonus is that Lyrica would help the fibro and RLS.
Swap citolapram for Savella - bonus is that as an AD it affects RLS less, and should also help fibro.

Betty R.

Medical Reply

If you have had RLS around the clock for 30 years, you must have a fairly severe case. However, if your symptoms have gotten more intense since being on Requip, and the Requip is working less well (does not relieve the RLS as well and you continue to need more of the drug) and spread to other body parts (than the legs), then it is likely that you have problems with augmentation.

Requip can be stopped cold turkey or slowly. However, once a patient has been on a dopamine agonist for a while, stopping the drug (even slowly) causes a marked worsening of RLS symptoms and only potent opioids are equal to the task of treating this problem. It takes a few months until the RLS calms down to much lower levels. I personally like the approach of stopping the Requip cold turkey as the process goes much faster but I prescribe methadone or an equally potent opioid to help my patients get through it.

Lyrica is typically started at the lowest dose (50-75 mg once or twice daily) then increased on a weekly basis by the same amount as needed. However, Lyrica is not potent enough to treat the withdrawal from Requip period although down the road it may help to reduce or eliminate the dose/need for opioids.

Savella may be able to replace citolapram for depression and may (little evidence for that so far but it theoretically has an advantage) worsen RLS less. You might still need the amitriptyline for sleeping but a better choice that is RLS friendly would be trazodone (which may help your sleep even better and does not worsen RLS).

Zopiclone is one of the better sleeping pills. Ambien is similar and may work better or worse (like everything else, this is very individual). You have already tried circadian which is the only other approach to insomnia.

A Reply from Betty

Sent: Sunday, January 22, 2012 1:00 PM
Subject: Treatment for my RLS

I have had RLS for so long including arms that I cannot with certainty say that the intensity is worse since Requip, but I can say that often at night time the Requip/tramadol does not relieve the symptoms as it should. To get off Requip would dispel any confusion over what it augmentation and what is not.

How long does a dose of Lyrica last, i.e. for symptoms 24/7 would a dosage twice daily be normal? Would I literally stop Requip one day and commence Lyrica the next day? At present I take 200 mg tramadol over the 24 hour period together with the Requip. If I switch to Lyrica would my present tramadol dosage help with the trauma of transition or is it just not potent enough?

When you suggest RLS friendly trazodone to replace amitriptyline for sleeping, would this be in addition to the Savella? I am interested in the Lyrica because it covers the RLS and the fibro. Also, the same for the Savella, as it is an anti depressant and also works for fibro.

Betty R.

Medical Reply

Anticonvulsants like Lyrica are typically not potent enough to take care of the marked worsening of RLS symptoms when you stop Requip. The tramadol will help but only about 25-50% (if you are lucky). You can start the Lyrica before stopping Requip but it will be difficult to know how much you will need until you stop Requip. Lyrica can last about 8-12 hours so it is often dosed twice daily (but it can be used 3 times daily with lower doses).

Trazodone can be used with other antidepressants (it is a very weak antidepressant itself) so you could take it with the Savella to help you sleep.


Sent: Sunday, January 22, 2012 8:19 PM
Subject: Vicodin risk for RLS?

I take a half and sometimes a whole Vicodin- I think it is the smallest dose it says 5/500 (?) for RLS. at night. I have been doing that for 5 yrs along with a half of Mirapex at .125. I was wondering should I be really worried about the effects on my liver? I am in my 60's.

The first time I tried Mirapex (Requip made me so depressed) I took the whole dose of the next higher dose because they didn't have the small size. I took it with the Vicodin and threw up all night. I was reading someone else had the same reaction. It is too strong to take a whole dose.

I would love to get off all these drugs but I end up literally beating my legs all night and have to stand to get relief. I am so worried about the long term consequences.- and hate the next day grogginess.

Linda B.

Medical Reply

The smallest dose of hydrocodone (Vicodin) available is 2.5 mg but then it is combined with 500 mg of acetaminophen (Tylenol). It is the Tylenol portion that could cause liver or kidney damage with time. You could get pure hydrocodone compounded at a compounding pharmacy but that tends to be very expensive. That is why we typically suggest that you try a more potent opioid (but take a smaller dose, like 1/2 of the smallest tablet) that does not have Tylenol in it (like oxycodone, methadone).

Another option would be to consider changing to the new RLS drug Horizant which is totally different and may work well on its own (instead of the combination of Mirapex and Vicodin.


Sent: Tuesday, January 24, 2012 8:56 PM
Subject: RLS in a 14 year old?

My 14-year-old daughter was recently diagnosed with RLS. She is taking 2 tablets of Pramipexole .125 mg. at night but is still not sleeping well. Would it be safe for her to combine this medication with Doxepin for sleep?

Judy F.

Medical Reply

First of all, check my website again for both the medical alert card (download this card and keep a copy with you for when you visit the doctor with your daughter and also bring a copy to leave on your daughterís chart or with any other doctor she sees such as an ER visit) and the RLS Treatment Page which lists more extensively all the medications that may worsen RLS.

Doxepin is one of the most likely medications to worsen RLS so your daughter should not use that medication. Better choices for sleep would include Ambien or possibly Lunesta.

Although pramipexole (Mirapex) has been extensively studied and used for RLS over the past 16 years, there are some concerns with long term use (especially in children who have many more years of therapy ahead of them). Your daughterís dose of .25 mg per day is at what many RLS experts consider the current (this has recently changed) upper limit for adults. You may want to discuss adding gabapentin (the new drug Horizant is actually a better form of gabapentin but it may be difficult to get it covered and it has not been studied in children although neither has pramipexole). The advantage is that there should not be any long term concerns and the drug may also help her sleep problem. It may also help reduce or eliminate the pramipexole dose.


Sent: Thursday, January 26, 2012 6:08 PM
Subject: Sudden Severe RLS

I have probably suffered from RLS most of my life. I remember it first being commented on when I was about ten years old. It was never very bad, just a slight urge to wiggle my feet whenever I was seated or laying down. Four year ago however, I had the first of a series of back surgeries to correct problems caused by a major auto accident. At first I didnít notice much of a change in my RLS, but I started to develop sciatica at the same time so any new leg symptoms were simply blamed on that. Two years ago I underwent a lumbar fusion, with little to no results. Since then I have been primarily on bed rest.

The last 6 months however, I have been undergoing a series of attempts to try and ease my pain by means of opiates and/or narcotics. I have tried everything from Vicodin to Demerol and Dilaudid. Gabapentin was tried, as was morphine and Oxycodone. Nothing helped. Extended release medications such as Ultram and Exalgo were similarly useless. Three weeks ago, I decided to be weaned off all medications in preparation for a new treatment.

That was when my troubles really began. I was placed on Clonidine .1 mg to handle the withdrawal symptoms and Morphine 15 mg for night time pain. I have not slept more than four hours a night since then. As soon as I stop moving or concentrating on something, my legs start moving. Both legs from toes to mid thigh creep, tingle, hurt, and cramp constantly all night long. It is only when I am too exhausted to stay awake do I drift off, only to wake up a few hours later and start all over again.

I thought this might be related to the new medications, so I stopped taking the Morphine, that only made things worse. So I switched and stopped taking the Clonidine once I was not longer having day time withdrawal symptoms. No help there. For the last four days I have been off of everything and my RLS is worse than ever, I canít sit for even five minutes without having to shift position. Sleeping is out of the question as I do more harm with my tossing and turning than by forgoing sleep all together.

Does anyone have any idea what might be increasing my RLS? I have no desire to start a new medication such as Mirapex as I will soon be undergoing a new form of treatment for my back. I am only twenty-three and do not look forward to this being a lasting part of my life.

Brittany H.

Medical Reply

t is difficult to figure out exactly why your RLS has worsened but it is not unusual for RLS to worsen with trauma (and that includes surgery, especially back surgery). Typically, the opioids used to treat pain after surgery take care of the RLS symptoms very well but for some reason that does not seem to be happening in your case. That is even more difficult to explain.

Although you do not want to add more medication, drugs such as Horizant or Lyrica help treat RLS and nerve pain and thus may kill 2 birds with one stone.


Sent: Friday, January 27, 2012 8:45 AM
Subject: Ibuprofen and RLS

I notice that your medical replies state that an anti-inflammatory like ibuprofen does not help RLS. I beg to differ. I've suffered from RLS for over 40 years, and have used Requip for the past few years. Sometimes it doesn't do the job. I noticed by accident that ibuprofen DOES help RLS, and I would much rather use that than Requip because of the side effects. More research needs to be completed regarding RLS and ibuprofen before you can state out-of-hand that it does nothing to help.

Viki H.

Medical Reply

When we say that a drug does not help RLS, we mean that there is no medical or research evidence demonstrating its effectiveness and that we have not seen a significant amount of patients who have found that their RLS improved while taking the drug. Ibuprofen (Advil, Motrin, etc.) is one of the most commonly taken drug as it is available over the counter and by prescription. I have had hundreds of RLS patients who have taken ibuprofen and several research studies have examined drugs that RLS patients have used and helped their RLS and anti-inflammatory drugs have never been found to improve RLS symptoms (unless they help arthritis pain which may then indirectly help RLS or any other problems).

There may be some issue that is unique to you which makes the ibuprofen help your RLS but it does not seem to generalize to others. We will post this email to see if there are others out there who may share your experience.

A Reply from Viki

Sent: Saturday, January 28, 2012 8:15 AM
Subject: Re: Ibuprofen and RLS

Hmmm . . . I don't suffer from arthritis or any pain in my legs, just an inability to keep my legs still. From some of the other posts it sounds like others are helped with anti-inflammatories as well. Whatever my condition is, it sounds as though there is a small group of us. Curious.

Viki H.

Medical Reply

There are always small groups of patients who respond to treatments that very few other ones find helpful. We get lots of emails from patients who state that the best treatment that they have ever tried is sleeping with a bar of soap in their bed. However, that is not a treatment that I would recommend.


Sent: Saturday, January 28, 2012 9:10 AM
Subject: Quit smoking & RLS

Is there still ongoing discussions about RLS here?

I quit smoking "cold turkey" on 10/30/11 and seem to have developed what might be RLS. Is or could RLS be a withdrawal symptom of quitting smoking?

Pat

Medical Reply

The stress of stopping smoking cold turkey might worsen RLS but it would be very unusual for it to be the cause of new RLS symptoms.


Sent: Saturday, January 28, 2012 5:37 AM
Subject: RLS help

I am attempting to wean myself off Mirapex (.375 mg), which I have taken for about 7 years, due to the side effects of nausea, dizziness, and compulsive overspending. I have not struggled with what might be called an addiction to internet shopping until being on Mirapex. Needless to say, I'm not getting much sleep and after 2 weeks of this am feeling desperate. The RLS affects my arms and legs and keeps me walking, hopping, and climbing stairs until 2 or 3 AM each morning. I awaken at 7 or 7:30 wide awake, but exhausted, as if my body is fatigued, but my mind is wide awake.

What's concerning to me, besides the overspending, is the need to continue increasing my dose and the worsening of symptoms. On .375 mg., I often had symptoms during the day and evening, not just when in bed, which was my baseline before starting Mirapex. I've read that this need to increase dose typically continues as you age.

Any ideas? Should I attempt the Mirapex again after having weaned myself down? Is there any way to prevent the obsessions and compulsions?

Barb B.

Medical Reply

The problem that you are experiencing is augmentation (a worsening of your RLS due to taking Mirapex). Stopping Mirapex is the correct action but as you have already found out, that drives the RLS into hyperdrive. Unfortunately, this marked worsening induced by stopping the Mirapex (which is especially worse in a patient who has augmentation) could last another month or two (or even longer) before the RLS calms down. At that point, the RLS should be back to where it was before you started Mirapex.

What we typically do in this situation is add a potent opioid (methadone, oxycodone) for a few weeks then we add an anticonvulsant (Horizant, gabapentin, Lyrica) and try to decrease or eliminate the opioid.

Starting the Mirapex again would likely create worsening augmentation and revive your ICD (impulse control disorder) which could result in significant financial loses.

A Reply from Barb

Sent: Tuesday, January 31, 2012 11:22 PM
Subject: Re: RLS help

Thank you so much for your earlier reply. After reading more of your answers on the website, I'm wondering if using one .125 mg. tablet of Mirapex 2 or 3 times a week would still revive the ICD issue and worsen the augmentation? And what about adding Ambien on alternate nights, using it in the same way - only 2 or 3 times a week?

Barb B.

Medical Reply

Using Mirapex .125 mg 2-3 times per week would likely not cause augmentation or cause recurrence of your ICD (no guarantees on that issue as ICD problems have occurred occasionally with very small doses) but you would have great difficulty getting down to that little Mirapex. As stated previously, trying to decrease your Mirapex will result in a marked worsening of your RLS and you have to be ready to deal with it correctly. Ambien does very little when severe RLS symptoms are impeding sleep.


Sent: Wednesday, February 01, 2012 3:18 AM
Subject: Percocet and RLS?

Yesterday the doctor at the Pain Clinic gave me a prescription for Percocet.5-325. I am not in that kind of pain yet. When I take it, though, it makes the RLS go away. If I take this medicine for a prolonged period of time, will I need higher and higher doses in order to make it work for my RLS?

I took Abilify about five years ago for depression. I found I had to keep taking more and more for it to work. When I stopped taking it altogether, my RLS was worse than before I started taking the medicine. I was told by movement disorder doctors that the Abilify made the RLS worse. I guess this is what they call "augmentation." Ever since, I have tried to be careful not to be in the same position again.

Dale K.

Medical Reply

Abilify does not cause ďaugmentationĒ although it may worsen RLS. Augmentation generally only occurs with dopamine drugs that first make RLS better than make it worse with time.

Most patients find that if they take a dose of an opioid like Percocet that it will work for years or decades without much of a need to increase the dose. The only concern is that Percocet contains acetaminophen (Tylenol) which does not help RLS so can only cause side effects (without any benefit). Purer drugs like oxycodone or methadone are preferred.


Sent: Friday, February 03, 2012 6:47 PM
Subject: Mirapex Withdrawal

My primary care physician diagnosed my RLS 9 years ago, and I have been taking 0.25 mg of Mirapex daily since then with pretty good success until a few years ago, when symptoms began starting earlier in the evening, as well as appearing during the daytime and occurring in my arms and legs. I suspected augmentation so I went to a neurologist who specializes in RLS and he confirmed that I had augmentation.

He took me off the Mirapex, cold turkey, and put me on 600 mg Horizant. He didnít think withdrawal from the Mirapex would be too bad because I was on a low dose. Well, the first two nights were horrible and I didnít sleep at all. I called the doctor and he put me on Tramadol 50 mg to take as needed to combat the withdrawal symptoms, and said to continue taking the Horizant.

So far itís been 10 days off the Mirapex and my symptoms have subsided during the day and early evening; however, Iím still having symptoms later in the evening, usually starting around 9 pm. I then take one 50 mg Tramadol and itís been effective in treating these symptoms; however, Iím wondering how long I will have to keep taking the Tramadol.

In other words, how long will the Mirapex withdrawal last before I stop having these RLS symptoms later in the evening (Iím assuming these are the withdrawal symptoms) and the Horizant works on it own? I understand the Tramadol can be addictive, and I do not want that to happen.

Mike

Medical Reply

Your ďneurologist who specializes in RLSĒ is clearly not as specialized in RLS as you thought. Stopping even a low dose of Mirapex once augmentation has set in will predictably cause a marked worsening of RLS symptoms that can rarely if ever be handled by anticonvulsant drugs such as Horizant. The ďwithdrawalĒ period can last a few months although it appears that you have already experienced some benefits with the decrease of symptoms during the day and early evening.

Taking one or two tramadol per day will not lead to any tolerance/dependence or addiction problems but you may continue to need this drug to take care of your RLS symptoms. I typically suggest stronger opioids to take care of the worsened RLS symptoms from stopping a dopamine agonist but if the tramadol works then that is very good as it is a much lower level of pain killer.

A Reply from Mike

Sent: Sunday, February 05, 2012 6:09 AM
Subject: Re: Mirapex Withdrawal

You mentioned that it is possible I may have to continue taking the Tramadol to treat my RLS after the Mirapex withdrawal period is over. Even though my neurologist gave me a prescription for 90 tablets of Tramadol with no refills, Iím sure if necessary he will write a maintenance prescription; however, if possible, I obviously would like to stop taking the Tramadol at some point. Since Mirapex withdrawal symptoms are the same as RLS symptoms, and should my RLS symptoms continue to appear after 8 or 9 pm, then how or when do I know if Iím still experiencing Mirapex withdrawal symptoms or if the Horizant simply isnít effective in treating my RLS symptoms on its own? And that beckons the question, if the Horizant isnít effective on its own, is it possible that just taking the Tramadol on itís own would be effective?

I understand Horizant is a new RLS medication, and therefore, real life data on its use is probably limited regarding its long-term effectiveness or the likelihood of patients staying on the medication; however, I would be interested if there is a known success rate when Horizant is the only medication used in treating mild to severe RLS symptoms.

For the last year or so I had been taking 20mg of Lexapro, and even though I was experiencing augmentation symptoms for some time before I started taking the Lexapro, I discontinued it last November when I read that it could worsen RLS symptoms. I really need to get back on an anti-depressant, and although the Lexapro was effective in treating my mild depression, Iím now reluctant to go back on it. Would you recommend going back on it, or trying another anti-depressant, and what about anti-depressant interactions with Horizant and Tramadol?

And finally, prior to my going off the Mirapex I also had been taking Ambien to help me sleep. Can I continue to take Ambien or Lunesta while on Horizant, Tramadol and an anti-depressant; and again, what about drug interactions? If yes, do you have any preference between Ambien and Lunesta.

Mike

Medical Reply

The Horizant question is a little tricky. The only way to know would be to stop the Horizant (down the road) and see if it actually changes anything. It is possible that with time (another month or two), that your need for tramadol may decrease dramatically (or even be eliminated). Even though the FDA has only approved Horizant at one pill per day, studies have demonstrated that 2 or even 3 tablets (taken together) are more helpful for at least half the patients (although the risk of side effects obviously increases). I have treated many patients with the higher doses of Horizant with very good results. However, if you feel that the Horizant does not really add much to your therapy, it would be reasonable to just take tramadol without the Horizant.

There is no long term data on Horizant but patients who do well on gabapentin (Horizant turns into gabapentin once in the blood stream) or on Lyrica (works on the same receptors) have done well in the long term (definitely no augmentation or other issues).

Wellbutrin is one of the only antidepressant medications that does not worsen RLS. It is certainly worth a try but if it does not help your depression, you may have to bite the bullet and take Lexapro. In that case, you may need to take more RLS medication.

Ambien or Lunesta are both fine. Ambien has a shorter half-life of 2.5 hours while Lunesta has a longer half-life of 6 hours. I generally recommend trying Ambien first (especially as it is available in generic form which is cheaper) and if that does not allow you to sleep long enough you can change to Ambien CR (also generic) or Lunesta (brand name only). There are no known drug interactions between Ambien or Lunesta and Horizant and tramadol although the sleepiness effects of Horizant may be additive to the sleeping pills (typically this is a plus in RLS patients with insomnia rather than a negative concern).
 


Sent: Saturday, February 04, 2012 3:28 PM
Subject: RLS and Requip

I am 64 years old and have had RLS for years. I would never go to the movies I would stand to watch one at home, and riding in the car after noon was a nightmare! My son was sent to a neurologist at u mass medical for movement disorders after a traumatic brain injury. she diagnosed me and put me on Requip. A small dose first then added an xl with the regular. If I take my meds on time I do well but if I forget I pay the price.

Sometimes are worse than others and once in awhile I take an extra .5 mg. if flying or a road trip. I never want to get on opiates so I try being real conscious about my regimen of Requip. I take a .5 mg between 1:00 & 2:00 p.m. then I take a 2 mg. XL between 4:00 5:00 p.m. then I take a .5 mg between 7:00 & 8:00 p.m.

Nancy R.

Medical Reply

It is wise to keep your total daily dose of Requip as low as possible as problems with augmentation (worsening of RLS due to Requip) may occur over the years. We now suggest that the total daily dose should stay below 1 mg if possible. Horizant or other anticonvulsants are another choice that has no addictive potential.


Sent: Tuesday, February 07, 2012 4:22 PM
Subject: RLS and my struggles with medications and doctors

Ever since I can remember from childhood, I have had trouble falling and staying asleep. I can only remember one day when I was 13 or 14 and I was so tired that I went back to bed and slept all day, waking up feeling pretty good. In college, I was exercising daily, doing both cardio and weights. Still, I did not sleep as well as I would have liked. Shortly after college (1995), I could tell that I was getting (or had) RLS, although I didn't know it by name.

I didn't know about any medications or therapy, so I just "put up with it." In 1996, I got married and my wife was able to tell me that I would not only shake my legs while trying to get to sleep, but also jerk them throughout the night, sometimes kicking her. A few years later, I was pretty miserable... I sought medical advice and was told it was in my head and was given sleep aids. Those made me very tired, but did nothing for my RLS. One doctor gave me valium, but that didn't really help either.

In 2001, when I moved into my new house, I hurt my back and required back surgery. As a result, I was given Percocet. OMG!!!! While being on that drug, I slept the best I have ever slept in my life both prior and since. Holy Cow!!! So, obviously, I went and sought out if I could take it regularly and, surprise-surprise, I was shot down. Once the Percocet ended, I was back to not sleeping well. One doctor eventually put me on Mirapex which helped a little. Then, when Requip became FDA approved for RLS, my doctor switched me to that. All was fine, except I developed obsessive compulsive behavior and spent money without thinking and gambled without any remorse. That happened for about 5 years (mid-2003 - mid-2008) and we had to eventually file bankruptcy and move my family out of state.

I remained on the Requip because, at the time, I did not associate it with causing my behavior. A year or so later, with my behavior remaining the same and falling back into financial troubles, my wife and I realized it was probably the Requip. I went off the Requip and reality set in... BIG TIME!!! I became extremely depressed and suicidal realizing what I had done. I was put on anti depressants, but that came with unwanted side effects. I stuck with it and then our lives started getting back on track and we were able to move back into our home state and send our son back to his old school to reunite with his friends. Things are starting to get back on track in our live.

After talking with my doctor and not wanting the side effects associated with the anti depressants, they put me on Klonopin for my RLS. Just like other drugs, it was working well for my RLS, but I became extremely moody and would overreact to the tiniest of things... sometimes withdrawing to my bed and sleeping for days without eating much, if anything. I decided to go off the Klonopin and have been "drug free" for about a month. However, my RLS is back in full force. Most importantly, though, my wife says that I'm back to the person she married and my son says I'm no longer a stranger.

I asked my doctors about opioids, considering that I have tried everything else with really bad outcomes. They adamantly seem to refuse to even talk to me about opioids, stating concerns about "addiction" and "shifting." The neurologist that I just recently saw wanted to put me on Neurontin, but given my past history with depression and suicidal behavior, I don't think that is a good idea, especially with these warning right on the bottle. He also refuses to prescribe any opioid.

I had my ferritin levels checked and I'm at 74. I am going to try to take iron supplements to attempt to get that up closer to 100 and see if it helps. If it doesn't help, I don't know what I'm going to do because I'm very sleepy during the day and it's starting to get worse and worse each week. My insurance this year is with Kaiser, but if needed, I might switch to a different insurance next year and hopefully search for and find a doctor more willing to discuss treating me with opioids. I'm really hoping, though, that taking the extra iron will eventually help. Any thoughts that you have would be greatly welcome.

Steve B.

Medical Reply

The real problem that you are having is that most doctors do not know very much about RLS and are especially lost when the first two FDA approved drugs (Mirapex and Requip) fail. There are currently two good choices to treat your RLS.

The first choice is the anticonvulsant drugs (Horizant, Neurontin/gabapentin, Lyrica) which do carry a warning of depression and suicidal behavior. These problems can be very serious but typically they are very uncommon and are a class warning rather than related to those specific drugs. If you do go on one of those drug, you should be monitored very closely for depression and suicidal thoughts but otherwise it should not be a big issue.

The opioids would also be an excellent choice. Tolerance and dependence is always an issue but if handled correctly, this also should be virtually a non-issue. The biggest problem is finding physicians who understand the drugs and their use in RLS well enough to prescribe them. You may have to seek out an RLS specialist (likely one who is outside the Kaiser system) who is knowledgeable and comfortable enough to treat you with whatever reasonable treatment that relieves your RLS. With proper care, you should be a very easy case to treat successfully.

A Reply from Steve

Sent: Tuesday, February 07, 2012 8:17 PM
Subject: Re: RLS and my struggles with medications and doctors

Your response about the Neurontin makes me feel better about trying it. The only thing my doctor said was that it is "safe and well tolerated." He didn't give me any explanation beyond that.

I talked to my wife, showed her your response below, and we decided I should give it a try since I'm not sleeping well and feel very tired and miserable. She is going to watch me for any behavioral changes that accompany depression and suicidal thoughts, no matter how small.

If the Neurontin doesn't work or if it works, but I start having behavioral changes, I may need to aggressively seek out a different doctor as you say.

Regarding my ferritin level, do you foresee any issues with also taking the ferrous sulfate to get my ferritin closer to 100? Should I try to do that before taking the Neurontin? Or is it ok to take them both together?

Steve B.

Medical Reply

Neurontin is not an unreasonable choice but it has problems with absorption (the higher the dose, the smaller percentage gets into the body) and the newer drug Horizant works much better (but may not be covered as well as the generic gabapentin) as does Lyrica (which also may not be well covered by insurance).

Ferritin levels above 50-75 are typically the goal for iron therapy so taking iron is unlikely to be helpful. Furthermore, once the serum ferritin level get to about 35 or so, very little of the oral iron that you take in is absorbed into the body (like less than 1-2%) so taking oral iron will likely just cause side effects (constipation, stomach upset, etc.) rather than any benefit.


Sent: Tuesday, February 07, 2012 4:34 PM
Subject: RLS Questions

I have had RLS for years (Iím now 60), and I have been taking 1 mg of ropinirole in the evenings. Until two weeks ago I was taking the ropinirole incorrectly (2 minutes before bedtime instead of 2 hours), the control of the RLS symptoms has improved a lot, but now I am experiencing nausea when taking the ropinirole.

I was recently prescribed Plaquenil (200 mg) for Sjogren's syndrome. Unfortunately I experienced severe nausea after starting the Plaquenil, and was prescribed 25 mg. of promethazine to help with that problem. I changed my schedule to take the Plaquenil in the morning with breakfast and I have been successful with not experiencing nausea. I have continued to take the promethazine in the evenings to control the nausea with the ropinirole.

I also have problems waking up with a start (a very sudden awakening that is scary in its intensity).

My questions are: is nausea a side effect of ropinirole?, and is the anti-nausea medication ok to take with ropinirole? Could the ropinirole be causing my nighttime awakening?

Also, my doctor prescribed alprazolam (1 mg) when I am experiencing an especially difficult night with RLS symptoms. In reading your patient letters, it seems that this medication should be the first to try instead of the ropinirole -- is that correct?, and is that something you would recommend so I could stop both the ropinirole and the anti-nausea medications?

Theresa

Medical Reply

Nausea is a common side effect of Requip (ropinirole) and can usually be markedly reduced or even eliminated by taking the medication with food. Requip is a first line treatment for RLS while Xanax (alprazolam) is a sedative (and anti-anxiety drug) that helps patients get to sleep (if bothered by RLS, back pain or anything else). Typically, we try to avoid or limit the use of sedatives as tolerance and dependence may occur when taken on a daily basis especially at higher doses (Xanax at 1 mg is a higher dose, .25 mg would have been a more appropriate starting dose). We usually recommend Ambien or Lunesta as sleeping pills rather than the benzodiazepines like Xanax.

Promethazine (Phenergan) is an anti-nausea pill that most often makes RLS worse which is why we strongly recommend against taking that pill (you can download our Medical Alert Card from our website as it contains all the drugs that worsen RLS and give a copy to all your doctors). Zofran and Kytril are excellent alternative drugs to take for nausea and they do not bother RLS.

If nausea is still an issue, you may want to discuss changing to the new RLS drug Horizant as it may help your RLS, does not cause nausea and may even help with your insomnia problem.

A Reply from Theresa

Sent: Wednesday, February 08, 2012 8:53 AM
Subject: RE: RLS Questions

Thank you so much for your quick reply. This is wonderful information and I will take your recommendations to heart. (My doctor actually prescribed Zofran but my insurance would only pay for 7 pills every 21 days). I will start taking the Requip with dinner and see how it goes 

I see where you didnít mention any connection with my awakening at night with a start --- does that have anything to do with the Requip?

Theresa

Medical Reply

If you take the Requip with food, it typically delays the onset of action by one hour so be aware of this delay and adjust accordingly. Zofran and Kytril are now available in generic form and should be quite inexpensive.

The Requip should have nothing to do with awakening at night with a start. That could be due to PLM (Periodic Limb Movements) which are very common in RLS patients. However, Requip typically decreases PLM but some may still occur and cause your problem.


Sent: Wednesday, February 08, 2012 5:09 PM
Subject: Dopamine related illness and risk for Parkinson's

I am a 41 Year old male. I have been treated for RLS for about 4 years now. Currently I am taking 2mg Requip nightly. I also have been treated for sleep apnea for around 10 years. Mirapex has a strange side effect of distorting my time perception, and making it feel as if hours have passed when in reality less than a hour has passed. I have found Opiates (prescribed on occasion for severe headaches I get once-twice a year) work the best, but it is hard to find a doctor that will use that course of treatment.

For the last couple of years, I was having problems with moderate to severe insomnia that baffled both my doctor and myself. After doing more research I stumbled upon the symptoms of adult ADD, this set off a memory. When I was around 7 years old I was diagnosed with hyperactivity disorder by a child psychiatrist. My parents chose not to use medication and I basically forgot about it until this memory surfaced. I was put on 60mg Adderall daily about a year ago, and my life improved quite a bit.

My insomnia lessened quite a bit and I felt that the Requip was working better. The Adderall also improved other parts of my life and I realize how ADD had affected me my whole life.  Considering it appears that both RLS and ADD are both Dopamine related illness, am I at increased risk of developing Parkinson's disease later in life?

I was adopted as a child and I have almost no biological health history, so unfortunately I cannot use genetics as a predictive factor.

Robert V.

Medical Reply

The side effect of distorted time perception is a very unusual one for Requip. It might be worth changing to Mirapex to see if that works better for you. Another option is changing to Horizant which is a different class of drug and may also improve your insomnia problem.

RLS and taking dopamine drugs (or ADD) does not lead to Parkinsonís disease.


Sent: Sunday, February 12, 2012 6:18 AM
Subject: RLS and Fibromyalgia

I have been diagnosed with Fibromyalgia for the past 25 years. I have also been diagnosed with RLS since 2008. The fibromyalgia has been totally under control for the past several years. However, over the past 4 months the RLS has become far worse. I have experienced several nights, often 2-4 nights in a row without a minute of sleep. Usually the night is spent walking or standing and reading a book.

Unfortunately the fibromyalgia symptoms have returned with the usual pain points very active. I take 0.50 mg of Mirapex each night. The doctor stopped me from taking amitriptyline because of the interaction with Mirapex. Is there any combination of meds that will allow treatment for fibromyalgia and RLS together? I understand RLS will worsen as I get older (now 65) but my doctor did not want to increase the dosage of Mirapex. Requip and the others did not seem to work. Any advice you could provide would be very much appreciated. Thank you.

Mike P.

Medical Reply

Firstly, there is no interaction between Mirapex and amitriptyline. However, amitriptyline does have a tendency to worsen RLS. I do agree with your doctor in that the dose of Mirapex should not be increased and in fact the Mirapex may be reasonable for worsening your RLS (called augmentation). The treatment for augmentation is to get off Mirapex but that is very hard to do unless your doctor has expertise in this problem. Very few doctors know what to do in this situation and they are more likely to cause more harm than help.

Another very good option to consider would be to add Lyrica to your treatment as it treats fibromyalgia and RLS very well (in the correct doses).


Sent: Sunday, February 12, 2012 7:39 PM
Subject: RLS and Leg Cramps

I gave had RLS for several years and currently take 0.5 mg of Mirapex at around 6 or 7 pm. I also take 300 mg Neurontin at bedtime. Due to sleepiness from the Mirapex, bedtime is now around 9pm. I have been waking at 4am feeling fairly wide awake and don't nap, though I occasionally doze if sitting calmly.

My problems are:

1. I often am awakened by foot cramps several times during the night and have to get out of bed and stretch them out.
2. Sometimes the RLS symptoms start at 3 in the afternoon, usually if I am sitting (in a movie, airplane etc.) 3. If I drink milk or eat ice cream in the evening, my foot cramps seem to be worse. Any correlation?

I do drink several cups of coffee in the morning and a few Diet Coke during the day. After reading some of your responses, I am going to try a month without Aspartame. Caffeine may be harder for me to eliminate. Is there any correlation between dehydration and RLS and/or foot cramps?

Jill B.

Medical Reply

Muscle cramps are not well studied or understood. It is very likely that caffeine may be an issue (and you are correct that it is tough to get off that drug) but only trial and error can confirm that correlation. There is no known correlation between dairy products and foot cramps but ice cream is known to trigger RLS in some patients. Not much is known about aspartame with respect to RLS or leg cramps.


Sent: Monday, February 20, 2012 12:11 PM
Subject: Restless Legs Syndrome

I have a severe case of RLS and am currently seeing a doctor for this. I feel I'm getting worse and it is even getting to the point where it is horrible at night and now it is even starting in the daytime, especially if I try to lay down and rest during the day. I am a 74 year old woman.

Currently, I have been taking a Gabapentin capsule at bedtime (400mg) along with a Pramipexole tablet (1 mg). Two weeks ago my doctor prescribed Carbidopa 50/Levodopa 20 CR, 1 tablet at bedtime. It is not working at all and neither are the other medications working. If I eventually go to sleep, I do not sleep long as my RLS comes back.

At the last support group meeting, a woman mentioned she had Sciatica and it got me to thinking about my back. My back has been hurting me for several weeks, as well as my neck hurting me. I spend a lot of time on the computer as well as other work sitting down. I then went to a chiropractor and after adjusting my back I had two wonderful nights of sleep and no RLS.

Is there a possibility that the condition of my back could be causing a more severe case of RLS?

Gwen H.

Medical Reply

It is certainly possible that your back pain is worsening your RLS. Any pain or discomfort in the body tends to worsen RLS so treating it should be helpful.

On another note, your medication is clearly not optimal and you may be experiencing augmentation of your RLS (worsening of RLS from taking dopamine medications) from being on pramipexole at a high dose (we currently donít like to prescribe more than .25 mg/day) and levodopa causes this problem so commonly that we strongly recommend against using it on a daily basis.

You might benefit from seeing a doctor who in more knowledgeable/expert at treating RLS.


Sent: Monday, February 20, 2012 12:13 PM
Subject: Medication Clarification

According to my mother, I have had RLS since childhood, and which was recently confirmed by a sleep study. The neurologist at the sleep center had me on Trazodone (I also have reoccurring insomnia), which she then told me to stop taking after putting me on Mirapex. The Mirapex seems to work on the RLS (I'm fairly sensitive to meds, so I only take 0.25 mg), though it seems to make my insomnia worse, and I wake up every few hours. I asked her about it, and she thought that insomnia/issues sleeping were unrelated to the Mirapex.

Is it okay to take the Trazodone with the Mirapex, or should I seek out a different sleep medicine for the occasional nights I cannot fall asleep? I am 25, and since the Mirapex is kind of expensive, is there anything cheaper to take? My RLS isn't unbearable, just affects my sleep quality and turns me into a groggy, less-concentrated employee at work.

In fact, the RLS seems to get worse when I don't sleep, and as long as I can sleep consistently for a few days, I wake feeling 75-80% refreshed... which is tolerable.

Matt L.

Medical Reply

RLS cannot be really be confirmed (or typically needs to be confirmed) by a sleep study. RLS patients have increased PLMS (leg kicks) which can be detected by a sleep study but more patients without RLS have these PLMS on sleep studies so their diagnostic value is fairly limited. RLS is diagnosed clinically and in questionable cases (there are very few of these if you understand the diagnostic criteria) a sleep study showing increased PLM may be somewhat helpful (which does not sound like your case).

One of the more common side effects of Mirapex is sleepiness but a small (but significant) group of patients get insomnia with this drug. That seems to be a lesser known fact but your experience clearly indicates that you are suffering from that side effect. Requip (similar to Mirapex) might have less of an insomnia problem (or more) and the only way to tell would be to try it. Both Mirapex and Requip come in generic formulations which should be cheaper for you.

There if no issue with taking trazodone with Mirapex but trazodone is not one of my favorite drugs as it tends to cause next day sedation. Drugs like generic Ambien (Zolpidem) are typically much preferred for insomnia. Treating your insomnia is important as your observation that RLS is worse when you are sleep deprived is on the money.

There are other choices of drugs to try like Horizant or Lyrica that would help your nighttime RLS and help you sleep but these do not come in generic versions and would be quite expensive (depending upon your insurance coverage). The generic gabapentin is somewhat similar but does not really work as well the other anticonvulsants (read the website for more information on this topic).

A Reply from Matt

Sent: Tuesday, February 21, 2012 8:09 AM
Subject: Re: Medication Clarification

It is weird that you mention it cannot be confirmed by a sleep study. I have always had a tendency to shake/move my legs during the day, much to others annoyance, but never really noticed it during my sleep, aside from waking myself up every so often right as I was about to fall asleep, and when drinking alcohol, during which time I'd wake up every few hours and never get very good sleep. I have however noticed that my leg sensations/strange tingling/etc. has become much more noticeable since the sleep study.

Perhaps I am now more aware of it, and it is mental? Now, instead of unconsciously shaking/moving my legs a lot during the day, I have the aforementioned burning/tingling sensation. Very strange. Per her suggestion, I also stopped drinking caffeine during the day for the past 3 weeks, so maybe that had something to do with it? I am very active, working out 5-6 days/week for about an hour and eat very healthy, so I don't assume it's a diet/exercise thing, but no way to know.

I will suggest to my neurologist when I see her about trying the Requip as you mentioned, since it never hurts to try. At age 25, I'd rather not get into the habit of taking too many RX drugs unless I absolutely need to, though sleep is very important. Do you have to take the Mirapex/Requip daily to maintain their effectiveness, or could you just take them every so often when sleep-debt was building up so as to avoid/put-off the augmentation?

I will also mention to her trying the Lyrica or gabapentin, to see if those are any better. The problem is, I don't think she is terribly aware of RLS, aside from handing out Mirapex, though I could be wrong.

Matt

Medical Reply

Typically, mild to moderate exercise improves RLS symptoms while vigorous exercise may worsen it. Where the dividing point between moderate and vigorous exists varies considerably from person to person and only you can decide if your exercise level is responsible for increasing your RLS symptoms (by decreasing the level of exercise and seeing if it has any effect).

Although it is not fully known whether taking a dopamine agonist (Mirapex, Requip) on an intermittent basis will preclude the development of augmentation (as that has never been studied in part because almost no one takes those drugs that way), it is likely that you are correct (similar to Sinemet being very safe when taken intermittently but causes augmentation very commonly when taken daily). One of the problems with taking the dopamine agonists intermittently is that these drugs have to be increased slowly to prevent side effects and when stopped for a while may then cause problems when taken at the effective dose (which is typically higher than the starting dose). Also, stopping a dopamine agonist may cause a significant worsening of RLS for several days or longer.

Unfortunately, you are right about most doctors, even neurologists not knowing that much about treating RLS.


Sent: Tuesday, February 21, 2012 10:19 AM
Subject: Hydrocortisone & RLS?

I now have a rash over all of my body. The doctor recommended over-the-counter hydrocortisone. When I went to the pharmacy, they said it would not be good for RLS because it had steroids in it. Is that true? If I apply it topically, will it affect my RLS?

Sorry to bother you, but I seem to get every ailment possible.

Dale

Medical Reply

Steroids have no effect on RLS except perhaps for female hormones which are somewhat related to cortisone like steroids. I typically prescribe high doses of cortisone related steroids to my asthma patients with RLS and have never seen worsening of RLS.

The amount of cortisone in a topical cream formulation of OTC hydrocortisone is so minimal that under any circumstances, you should have no concern.


Sent: Friday, February 24, 2012 10:07 AM
Subject: Caffeine and Mirapex interaction

I was wondering if you knew of any documented stats on side effects that result from combining Mirapex and caffeine. I have been on Mirapex for RLS for approximately 13 years. I managed to stay at a relatively low dose for the bulk of that period of time (around .25 to .75). But over the past three years or so I've had to increase my nightly dose considerably, partly because I was also going up on my antidepressant (Lexapro) (my RLS is a side effect of being on SSRIs). I basically went from 1 mg to 3 mg during that time, and I'm on 3 mg now.

Consuming caffeine is like playing Russian Roulette for me---sometimes I can "get away with it," but other times I end up with what I describe as a "body attack," where it's as if my body has an anxiety attack while my mind is absolutely fine. I never have this experience right after I consume caffeine; it's always after I've taken Mirapex and---most importantly---slept. I will wake with the anxiety and get so physically overwhelmed I feel close to passing out.

Obviously, I will abstain from caffeinated beverages for the time being. But what I was curious about was whether you had ever heard of anyone having a similar experience when combining caffeine, Mirapex, and sleep.

Alissa

Medical Reply

I have never heard of a similar reaction of RLS to caffeine, Mirapex and sleep.

Is your RLS under control or is it still active despite the high dose of Mirapex at 3 mg?

A Reply from Alissa

Sent: Monday, February 27, 2012 12:19 PM
Subject: Re: Caffeine and Mirapex interaction

Yes, my RLS is fine at 3 mg. However, I'm not too thrilled about the other side effects of Mirapex (such as drowsiness and grogginess in the morning).

Despite the fact that Requip is pharmaceutically similar to Mirapex and in the same class of medications, do some folks seem to tolerate it better?

Alissa

Medical Reply

Although Requip and Mirapex act upon many of the same receptors (there are several dopamine receptors and although they overlap quite a bit, there are significant differences in which receptors they bind to and how well), there are several differences between the 2 drugs. They are metabolized differently (Requip in the liver and Mirapex in the kidneys), have different durations of action and their side effect profile, although often very similar, can be quite different from patient to patient. Having failed one of these drugs due to side effects often does warrant a trial of the other (unless the typical dopamine side effects were very severe at low doses).

It might be worth considering a change to Requip to see if that drug does not cause those strange side effects but the equivalent dose is 6-12 mg. That is a very high dose (as is your Mirapex at 3 mg) and we now typically recommend maximum doses that are much smaller (Mirapex at .25 mg daily and Requip at 1 mg daily). However, getting off the dopamine agonist drugs once on a high dose is very difficult (your RLS will go berserk for a few months) and should only be done by an true RLS expert.


Sent: Sunday, February 26, 2012 11:40 AM
Subject: RLS and Pregnancy

I have suffered with Restless Leg Syndrome since the age (that I can remember) of 3 years old. My mom use to cut off the noisy plastic feet of full body sleepers because my feet were "hot." I remember putting my legs out the car window to have the wind blow against them on long road trips. Being that RLS, in the 1970s through the 1990s was in its infancy, I simply suffered every night with RLS. I remember seeing a special on TV when I was in my teens about a girl who was in the hospital because of RLS. This scared me but I could totally relate to her pain. I would get up every hour and put my feet and legs under cold water. At night, I would stay in one spot in my bed until my feet burned, then move to the side to find a cooler area in the sheets and repeat this until I could fall asleep. I would then way up every hour and, due to my "hot feet," put my legs and feet under cold water from the bath tub. Every hour...

At the age of 22, I decided to travel around the world. Knowing that I couldn't put me feet under cold water while in Nepal, I went to see a neurologist. He prescribed Klonopin. I remained on Klonopin until the age of 31 at which time I wanted to get pregnant. I switched to calcium, magnesium, iron, etc all which worked for me at that time. I miscarried but during the first 11 weeks, my RLS was at bay. After a few years, my RLS would not respond to the supplements so back to Klonopin.

About 6 years ago, my RLS physician put me on 1 mg of Requip. I was still taking 2 mg of Klonopin. Additionally I was - and still am - taking 300 mg of Wellbutrin. In September 2011, I entered a treatment program for additions. Of course, they wanted me off of Klonopin. I have never abused Klonopin however I was willing to do whatever they wanted me to do. I was able to get down to .5 mg of Klonopin and raised my Requip to 2 mg. During this time, I was consuming no caffeine and my RLS was still insanely horrible. I was still on Klonopin and for my own good, figured out a way to get off Klonopin by increasing my Requip.

Since October 2011, I have been able to get off of Klonopin. At first I raised my Requip, gradually, to 4mg. I have been able to reduce it to 2mg nightly. I am back to consuming caffeine as well. The big question: I want to try to get pregnant (I am 40 years old) and cannot get off of Requip without my legs acting up every night. I am taking calcium, magnesium, folic acid, iron, vitamin D, vitamin E and fish oil.

I am extremely fearful of getting pregnant as I honestly cannot imagine not sleeping for 40 weeks (plus the pre and post weeks). My RLS has gotten so horrible that the nights I am awake, or didn't take my medicine early enough, I just want to die literally. I have even considered sleeping during the day and working at night thinking this might put my RLS at bay. Fortunately, I could do this with my line of work.

I do exercise on a regular basis as well and have just invested in a desk treadmill so I can walk about 5 miles / day while at work. I am so sad and afraid that I will not be able to bring a child in to this world simply because of my RLS. I have searched high and low on the internet for other women like myself - and what they have done to temporarily relieve themselves from RLS. I am considering adoption or surrogacy as well.

What can I do? My clock is ticking and I really want to figure out an alternative for at least one year.

Anne M.

Medical Reply

Once on Requip for a while especially at higher doses (over 1 mg), it is very difficult to stop this drug without having RLS symptoms markedly worsen. This drug is category C and should generally not be used during pregnancy. The other major alternative (FDA approved) drug is Horizant and that also is category C so is not appropriate for pregnancy (but may be a reasonable drug to use otherwise).

The drug that most RLS specialists prescribe for pregnant RLS patients is methadone (oxycodone is an alternative). It is category B at low doses (which is what works very well for RLS symptoms during pregnancy) and has helped many pregnant RLS patients get through their pregnancy. However, most physicians are not very comfortable prescribing methadone for RLS in general let alone for pregnant patients. It may require that you see an RLS specialist who is familiar and comfortable with prescribing an opioid for you while pregnant. You should have little trouble getting through your pregnancy with proper care.



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The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.


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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 99.
http://www.rlshelp.org/rlscomp99.htm
This web site was last modified on Tuesday, February 28, 2012.
Cartoon above was created and drawn by Robert Van Den Berghe.
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