Patient letters on RLS symptoms and remedies- Page 103

Sent: Tuesday, November 06, 2012 7:36 PM
Subject: RLS and Restful Legs?

I have had RLS for many years and do not take a prescription for it. In Sprouts market I found "Restful Legs" and have used it a few times and it helps. I am wondering about the safety of this product. It is made by Hylands, Inc. in Los Angeles. the ingredients are :

Arsenicum Album 12x HPUS
Lycopodiium 6x HPUS
Pulsatilla 6x HPUS
RHUS Toxicodendron 6x HPUS
Sulphur 6x HPUS
Zink Metallicum 12x HPUS

Gwen P.

Medical Reply

The safety and effectiveness of this product has never been studied and most likely the only way Restful Legs works is through the placebo effect (like a sugar pill).

Sent: Wednesday, November 07, 2012 7:09 AM
Subject: Lyrica with Mirapex?

Wondering if it might be worthwhile to try a low dose of Lyrica in the evening, and take less of my Mirapex. I currently use Mirapex ER 0.375 mg in mid-afternoon, followed by immediate release pramipexole 0.125 mg once or twice more in the evening. Sometimes I need a third dose to get things settled, but the evening is pretty much ruined by that time, and then I just fall asleep when my legs finally stop, falling asleep by 9pm or so, which is earlier than I'd like. (I have had RLS for about 12 years, and have used Requip and Mirapex with about comparable control, with the sedative effects being my biggest problem.

Recently tried the Neupro patch, hoping for more even suppression of symptoms, but did not get that, with breakthrough of symptoms every evening, even with higher dose.) I took a 100mgm dose of Lyrica last evening, while waiting for my Mirapex to help me, and, of course, went out like a light, waking dope-y this a.m., but wondering whether a MINI dose of Lyrica in the evening might work better than the pramipexole without making me too drowsy????? ( I had the 100 mg pills on hand from a short term use after a back injury this summer.) That dose was WAY too sedating. Has this combo of meds been tried?

Nadine A.

Medical Reply

It is possible that by adding a small amount of Lyrica (25, 50 or 75 mg) that you might get better control of your RLS and not experience as bad sedation side effects.

However, there is a bigger issue here which is that you are most likely experiencing augmentation (worsening of your RLS from taking the dopamine agonists, Mirapex and Requip) and that getting off the medication may be better in the long run. The short run will be very tough unless you see a doctor who knows how to treat augmentation problems.

Sent: Thursday, November 08, 2012 11:50 PM
Subject: RLS

I have been very fortunate. I find that if I walk for at least 30 minutes a day and stretch my legs that I am relieved of RLS symptoms. I also understand that if you use a form of folic acid it helps some people.

Judy E.

Medical Reply

Walking and stretching are known to help RLS but folic acid has never been found (by proper medical research) to help RLS.

Sent: Friday, November 09, 2012 4:13 PM
Subject: How to do a drug holiday when augmentation occurs

I have been taking Mirapex and have started needing it earlier and earlier each day. I know this is called augmentation. How many days do I need to stay off of this medication or can I start using Requip right away? I do have Requip. I have taken Requip before and had augmentation and started Mirapex right away and it worked for about six months.

Freda M.

Medical Reply

Typically, we do not replace one dopamine agonist with another when augmentation occurs. Since Mirapex is more potent than Requip, it may be that you temporarily relieved your RLS augmentation problem by taking more dopamine drugs. The correct treatment for your problem is to completely get off the dopamine drugs. However, doing so is quite difficult unless your doctor knows how to deal with augmentation (and most do not have any idea of what to do).

Sent: Wednesday, November 14, 2012 9:05 AM
Subject: Lamotrogine (Lamictal) for RLS

I currently take 100 mg Lamotrogine in the morning as a mood stabilizer. I have taken Ropinirole (0.50 mg) for RLS at bedtime for several years. I would like to know if Lamotrogine is effective for the treatment of RLS. I am considering taking the dose of lamotrogine at bedtime due to some minor side effects, including drowsiness. Is it possible the bedtime dosage of Lamotrogine would compliment (or potentially replace at some point in the future) the Ropinirole I am currently taking. The doctor prescribing the Lamotrogine said I could take it either in the morning or bedtime.

Thomas S.

Medical Reply

Lamotrogine has been studied very minimally for treating RLS. From the available data, it has at best modest effects on RLS but your mileage may vary (different people respond differently to this and all other RLS drugs). You could always try taking it in the evening and see if that helps as does an increase in the dose but I would not expect a marked response.

Sent: Friday, November 16, 2012 6:44 AM
Subject: RLS

I have been taking Mirapex for about 5 months. It works OK but I occasionally get nauseous. I can live with that as long as I can sleep - should I worry about the nausea? Andd I don't know if this is also related but I have been getting pimples in my scalp since I started taking the Mirapex.

Doug S.

Medical Reply

You can resolve the nausea by taking Mirapex with food but note that it will take up to an hour longer to kick in (so you may have to take it earlier). As far as any skin reaction, that is always possible with any medication (but not very typical of Mirapex) and the only way to determine that issue would be to stop the Mirapex for a while then restart it and see what happens.

A Reply from Doug

Sent: Saturday, November 17, 2012 7:55 AM
Subject: Re: RLS

I'll try it with food. Regarding stopping the Mirapex, is it OK to just stop for awhile, or should I gradually cut down on the dosage? I thought I read somewhere that it was not a good idea stop taking the medication suddenly, but also that it was not a good idea to cut the pills in half as this caused the medication to work faster (I only have 0.5mg tablets).

I should have mentioned that I also started taking Amlodipine for high blood pressure about the same time that I started taking the Mirapex, and it's possible that may be the cause of my scalp acne.

Douglas S.

Medical Reply

You are actually on a fairly high dose of Mirapex (starting dose should be .125 mg) and it may be better to gradually cut down. However, even gradually decreasing the dose may cause your RLS symptoms to dramatically worsen as your body’s dopamine receptors may show their displeasure at being deprived of extra dopamine now that they are accustomed to getting it on a regular basis.

There is no issue about cutting those pills in half as they are not the slow release type which are affected by being cut.

A Reply from Doug

Sent: Sunday, November 18, 2012 5:28 AM
Subject: Re: RLS

Again, thank you for your help and support. It was through you that I discovered that the Mirapex actually worked. After my knee replacement op in May I found I had RLS. My doctor prescribed Mirapex at 0.125 but he told me to take the medication at bedtime, which I did. But as the medication takes a few hours to take effect (which I did not know at the time) I did not think it was working so my doctor upped the dosage to 0.5mg. As I also took that at bedtime I again did not think it was working, so I stopped using it, and relied on the pain dug Hydroco/Acetam to get to sleep.

Since I found your web site (in August) and discovered how to take the medication I have been sleeping well. I have mainly taken 0.5 mg, but have tried, with some success, in taking the 0.125 tablet on some nights.
I am going to take your suggestion and cut back to the 0.125 dosage by cutting the tablets in half and see how that works.

Douglas S.

Sent: Wednesday, November 21, 2012 12:34 AM
Subject: Withdrawal from Mirapexen/pramipexole


I live in the UK and have had restless legs since being a child. I am now 49. 2 and a half years ago I discovered that there was medication for restless legs and my GP prescribed 0.088 mg Mirapexen.
Initially it was amazing and I slept so well. Soon after I experienced augmentation and rebound. I was offered a higher dose but refused as I did not want to start increasing my intake of this drug. I have remained on this low level but have decided to come off it completely and go back to managing my restless legs without using heavy medication. It no longer works very well.

My doctor agreed that this was a good idea and supported me to come off it. I have now been off it for 5 nights with almost no sleep and far worse restless legs than I have ever had before. I also experience severe jerking of the leg. I knew I would have withdrawal symptoms and have taken time off work to manage them.

However I have no idea how long they are going to last. I can't find anyone else who has come off like this. Are you able to give me an idea of how long it is going to take? I so want to do this but I am not really functioning at all at the moment due to the lack of sleep and pacing, stretching, baths, cycling etc that I do in the night to manage the agony. I would be grateful for your advice on how long it might take and if there is anything that might help relive this agony.

Fiona

Medical Reply

What you are experiencing is very typical for stopping pramipexole (Mirapexen) especially once augmentation occurs. Unfortunately, this marked worsening of your RLS symptoms may last at least a few weeks and possibly a few months.

I treat my patients with potent opioids (oxycodone, methadone) but I know that in England, doctors do not prescribe potent opioids. However, you may get some relief with moderately potent opioids like codeine or hydrocodone.

Sent: Wednesday, November 21, 2012 6:51 PM
Subject: OxyContin vs. methadone

I am currently on OxyContin twice daily (to avoid the up and down effect of straight oxycodone that led to both nausea/flu-like symptoms at least once a day as well as RLS that would tend to get worse during times I was waiting to take the next dose leading to having to take more medication than when taking a long term dose). I also take additional oxycodone for any breakthrough RLS. Don't generally need it during the day unless I have to get in the car or be sitting for a long period of time like at church or a movie. My RLS is pretty much controlled except for hormone related days (PMS, ovulation...which hopefully won't be happening too much longer as I am in my mid 50s), on those days I add usually two doses of 5 mg. of oxycodone. Usual total dosage is 35 mg. daily, never go over 45.

If it was just the RLS issue, I wouldn't be for changing a thing. However, the OxyContin/oxycodone does seem to create a sense of apathy in me. Not actually depression (Wellbutrin did nothing for it which I tried just in case) but more of a lethargy that makes it hard to get things done especially with the very low level of energy I have (possibly have Chronic Fatigue, don't have Fibromyalgia). It is difficult to keep to any exercise which I would love to do as I understand it can help lower needed medications levels plus I need to lose all the 65 lbs that Mirapex and Permax put on me so having the desire to put the effort into eating right as well as exercising would be very nice....especially with me just being told I have to lower my cholesterol and informed that the peripheral neuropathy I am currently experiencing in my feet may be a sign I am tending toward diabetes (I have two uncles who developed diabetes type 2, my daughter is diabetes type 1 but the only one in the extended family and I was diagnosed as hypoglycemic when I was much, much younger but lost those symptoms when my sleep disorder was treated so it would appear to have been tied to sleep deprivation as I read is possible somewhere recently so there may be some family predilection, but probably my obesity is enough...just over 200 lbs).

I have noticed a change in the apathy level when I was required to stop using oxycodone due to a new doctor who refused to allow me to continue using the opiates that my previous doctor who moved suggested and which were working great. She insisted I try Requip even though I had such poor success with Sinemet, Permax and Mirapex and that ended up with me projectile vomiting, (have also tried Lyrica and anything else that comes up on the market...my current doctor and I are very proactive in seeking treatment options but so far have always had to come back to the opiates which seem to have no side effects on me save for constipation which I balance with magnesium----I take Calcium and Mag in 1:1 ratio between 350-600 mg as well as Potassium for leg cramps---and this sense of apathy/lethargy). After a year trying to work with her, switched doctors to my current one when she refused to give me anything besides Ultram which barely controlled the RLS but kept me awake all night and most of the day. I also noticed a change in the apathy level two months ago when I was able to drop the opiates level significantly due to a trial of Horizant....which unfortunately stopped working after two weeks (though I got a lot of work done and was even hitting the treadmill for those two weeks) and even seemed to make the RLS worse.

Having read your latest emails of the past year or so, I am wondering if perhaps methadone would be a better choice, if it might have less issue with apathy or I should just be happy I am not being driving insane by RLS or having to spend my days in the bathroom with the dopamine agonists with huge augmentation and I should just save methadone in case I ever need to get off the OxyContin. I have been on the oxy off and on for about 9 years and have only very slowly increased it (and wouldn't be taking as high a dose if the insurance would allow me to purchase two different dosages of OxyContin as I would easily handle a lower one during the day). I have been keeping a very close eye on dependence...obviously there is a physical dependence with the withdrawal symptoms if I miss a dose, but I forget to take it often enough that there seems to be no emotional dependence. I don't get any sense of high from the drug...never have, not even at the beginning----and at best on occasion, I will get a sense of relaxation or calmness but even that is pretty rare these days so there is no incentive for me to take more.

I also take iron supplements, over 5 years have managed to edge it up to 38 (whatever the units of ferritin are measured in). Any suggestions on the most effective iron supplement would be nice as well. On occasion I take Ambien, 5-10 mg for insomnia which is chronic but does not seem to be caused by the opiates but rather just having a crazy sleep pattern for decades. Don't like to take too much because it can trigger migraines as well as increasing my problems with sweating that has come up due, I think, to menopause. Having to change clothes 3 or 4 times a day is a good incentive to try to get to sleep with more natural means than Ambien, another reason I would love to lessen the apathy enough so I could get on some sort of exercise routine like once I was able to do so before the RLS took off for the stratosphere.

CR

Medical Reply

Methadone typically works better for RLS than oxycodone but like any generalization there are lots of exceptions (like 10-20% or so). We don't know why it helps RLS so much better than other opioids (with generally fewer side effects) but that is the experience of most RLS specialists so it is worth a trial in your case.

Although it does have fewer side effects, it certainly could cause the apathy/lethargy problem that you are experiencing with oxycodone. Another consideration would be to take higher doses of Horizant. Even though it is only FDA approved for one tablet daily, the literature supports higher doses (up to 3 tablets taken together at dinner) and many RLS specialists will employ those higher doses with success (as long as side effects and cost do not preclude its use).

If RLS is worsening slowly over years, I will start with less potent opioids. However, in severe cases (or when I am having the patient stop a dopamine agonist like Mirapex or Requip due to augmentation), I go right to methadone.

Sent: Saturday, November 24, 2012 9:35 PM
Subject: Mirapex and RLS

I've written to you several times over the past few years, but this is something totally new. Mirapex ER (3 mg) has been a Godsend for me over the past few years but it appears I may have to come off of it - at least for a short while.

Over the past year, I have developed edema in my ankles and feet that is getting worse. I have had every recommend test done (ultrasounds of the legs and heart, stress test, etc) with nothing found. So we have reached the point that the only thing we can find is that edema is listed as one of the possible side effects of Mirapex.

My physicians, my pharmacist and I agree that this seems like a long shot, but we are out of other ideas. Have you seen anything similar in your experience?

Dave R.
Lexington, KY

Medical Reply

Mirapex has been known to cause edema (swelling of the lower extremities). However, for most patients this is just a nuisance and not a real medical problem. You are on a high dose of Mirapex as the maximum daily dose (approved by the FDA for RLS) is .5 to .75 mg and currently many experts prefer to keep the daily dose at a maximum of .25 mg per day.

It may be time to consider alternate RLS treatment although the anticonvulsant drugs (Horizant, gabapentin and Lyrica) often cause edema also.

Sent: Wednesday, December 05, 2012 1:56 PM
Subject: Mirapex

I was diagnosed probably ten years ago with RLS. Have been taking Mirapex ever since. Of course have experienced the augmentation and the rebound effects. Mirapex however does a great job of letting me sleep. But…..I am experiencing severe muscle pain to the point of having trigger point injections, muscle-relaxers, massages, chiropractic help, etc. Nothing helps long term. I also have a lot of brain fog and forgetfulness, such as forgetting a word mid-sentence or trying to remember something from the past and I get nothing.

I have recently tried Requip but it doesn’t last long enough to get a good night’s sleep. I have just been switched to Gabapentin and am taking 1200mg a night and it isn’t working at all. There has to be something else. I love the fact that the Mirapex works but I really feel like the muscle pain and brain fog are directly related to the Mirapex and it is scaring me.

Lori J.

Medical Reply

Although the muscle pain problem is not typical of Mirapex (and after prescribing it for over 15 years, I have never seen that happen), the brain fog, forgetfulness and augmentation problems should be sufficient to put this drug on the “bad list” of drugs that you should not use.

Gabapentin has many issues but works for only a few patients while the new Horizant (better delivery system for gabapentin) works much better. It may be worth trying the new Neupro patch which works around the clock and might be a very good choice (it has less chance of causing the Mirapex like side effects but the only way to know is to try it).

If the above treatments do not work, there are others to try (but first you need to try those above).

Sent: Saturday, December 08, 2012 12:13 AM
Subject: Advice needed

I am a 38 year old male living in Ohio. I have had RLS as long as I can remember but only a mild case. Several years ago I suffered a severe herniation of a disc in my lower back and needed to have a discectomy/laminectomy to correct it. After the surgery my RLS exploded. It has been severe ever since. I experience these severe symptoms every day most severely at night but during any longer period of rest or if I am extremely tired during the day.

My GP seems to be sympathetic and has worked with me using much of the information obtained on your site. Through the course of these several years I have tried Requip 1MG and taking up to 3MG with little relief, Mirapex .25 mg to start and taking up to 1mg with little to no relief. I have also tried many other things such as Ambien which helped me fall asleep but I woke up soon after with worse symptoms than before I fell asleep, Neupro 1 mg which I am currently taking at 1mg which did not help and caused severe headaches, Neurontin, Magnesium supplements, Xanax, and finally Horizant 600mg which I have taken with little effect so far although it does seem to "take the edge off" but not enough for me to sleep.

This brings me to the potential problem. The only thing that has seemed to work is opiates. I have been on Vicodin since before my back surgery (due to the injury) and it has worked wonders. The problem is that the dose I have had to take has increased significantly over the years and now I take 20mg at bedtime to sleep and 10 mg as needed during the day which is usually 2 times. This seems to be a lot and I worry about the risks of dependency. Let me just say that I do not drink, smoke, chew tobacco, or take any illegal drugs at all. I am an athlete and exercise daily. I want to talk more with my doctor about something that would possibly allow a lesser dose or something that would be longer lasting as the Vicodin seems to fade after 3-4 hours and many times I awake before sunrise with extreme jumping and crawling feeling in my legs and I will need to take additional Vicodin to ease the symptoms. This all seems to be too much but it is all that works.

I am mortified to bring up oxycodone, OxyContin, or methadone to my doctor and a little concerned myself about these drugs because of a possible addiction risk but you seem to be confident in some of them for use alone and in conjunction with Horizant. Your advice is much needed and appreciated and know that as I am typing this it is 3:10am here and I woke up due to symptoms of my RLS after taking my nightly dose of Vicodin at 10:30pm.

Myron

Medical Reply

It is quite common for RLS patients to notice a marked worsening of their RLS after surgery (and especially back/spine surgery) but the reason for this remains unclear.

The combination of Horizant and an opioid often works very well. Although Horizant is only approved for once daily use, I often prescribe 2 or even 3 tablets a day (and the medical literature does support this treatment). The reason to consider methadone over Vicodin is that the hydrocodone in Vicodin lasts only 4-6 hours (as you have already noticed) thus requiring repeated dosing and increasing the daily dose requirement. In addition, the acetaminophen (Tylenol) part of Vicodin does nothing for RLS and thus may only cause side effects (liver or kidney damage) with long term use.

Most doctors are reluctant to prescribe drugs like methadone but in your case where there is no history of addiction/drug abuse, potent opioids should be very safe and not lead to tolerance/dependence/addiction if managed correctly. The hard part is finding a doctor who will prescribe these drugs and knows what he is doing (especially with respect to RLS).

Sent: Wednesday, November 14, 2012 9:05 AM
Subject: Lamotrogine (Lamictal) for RLS

I currently take 100 mg Lamotrogine in the morning as a mood stabilizer. I have taken Ropinirole (0.50 mg) for RLS at bedtime for several years. I would like to know if Lamotrogine is effective for the treatment of RLS. I am considering taking the dose of Lamotrogine at bedtime due to some minor side effects, including drowsiness. Is it possible the bedtime dosage of Lamotrogine would compliment (or potentially replace at some point in the future) the Ropinirole I am currently taking. The doctor prescribing the Lamotrogine said I could take it either in the morning or bedtime.

Thomas S.

Medical Reply

Lamotrogine has been studied very minimally for treating RLS. From the available data, it has at best modest effects on RLS but your mileage may vary (different people respond differently to this and all other RLS drugs). You could always try taking it in the evening and see if that helps as does an increase in the dose but I would not expect a marked response.

A Reply from Thomas

Sent: Saturday, December 08, 2012 8:33 AM
Subject: Lamotrogine and RLS

This is in follow-up to an email exchange we had a few weeks ago regarding the potential for Lamotrogine to complement my current treatment (Requip) for RLS. In my case, the Lamotrogine actually made my symptoms worsen. I have gone back to taking Lamotrogine in the morning.

Thomas S.

Medical Reply

Thanks for the follow up. It is not unusual for patients to have reverse reactions to many of the drugs that generally help RLS.

Sent: Saturday, December 08, 2012 1:07 PM
Subject: Drug change to Neupro?

Is there any point in trying Neupro if I have had adverse reactions to Requip and Mirapex (dizziness, heart racing, higher blood pressure)? I will really appreciate any guidance.

MWI

Medical Reply

Since Neupro is also a dopamine agonist drug like Mirapex and Requip, there is clearly an increased risk of experiencing the same side effects. However, since blood levels are very even and steady with a patch (as opposed to the peaks that occur with short acting pills), there is a reasonable possibility that you may avoid those adverse reactions with Neupro, especially if you stay with the lower doses (1 or 2 mg patches).

Sent: Monday, December 10, 2012 9:38 PM
Subject: WED/RLS

I hope you don't mind my email. I am desperate for advice. I have had RLS for about 7 years and suffered with this. I didn't know about this disorder. About a year ago, I started getting a lot of back pain. I have a Grade 2 spondylolisthesis and bulging discs in my thoracic vertebrates. All confirmed with MRI. My back doctor put me on Norco 10mg and low and behold my RLS went away. It was a miracle. I started sleeping. 4-5 straight hours per night. Eventually I had a cervical epidural done, which helped the back pain immensely. Thus I did not need the Norco. When I went off the Norco the RLS came back. Because I had several months of relief with the Norco my tolerance was down.

I talked to my family doctor who put me on Requip. Initially this helped but then stopped. The symptoms increased, were more intense and started earlier in the day. That is when I learned about augmentation. He then tried Mirapex with same result. He refused to prescribe the hydrocodone (Norco) so referred me to a neurologist. It took awhile to get an appointment and my RLS was worse than ever. Once I finally did, the neurologist prescribed Requip again. I took it and had the worst night ever. I tried a second night and thought I would go out of my mind. I called and asked about going back on the hydrocodone as I an exhausted.

I also suggested maybe Horizant. I had joined the RLS Foundation and was getting more knowledgeable. He prescribed Klonopin .5 mg which I took 4 hours ago. As you can tell it has not helped. I am still up, moving and massaging my legs. I do not know what to do. I don't think my doctors understand. I am so tired, I don't know what to do or where to turn. I live in a smaller city where there are not a lot of options for doctors. I wish I could go back on the hydrocodone. 10 mg or less per night controlled my symptoms for several months, did not need to increase and had no withdrawals when it ran out.

I intend on ordering your green book for my neurologist but I don't think he really listens to me. I thought maybe you knew a way for me to get my doctor to read your book. I am grasping at whatever I can do.

Sandra B.

Medical Reply

The problem that you are up against is becoming all too common. Most neurologists do know something about treating RLS but often are not that familiar with augmentation and how to treat it. Your neurologist unfortunately does not seem to know that much about RLS as Klonopin is no longer recommended for treating RLS as it just works as a sleeping pill (and there are many better ones).

Once augmentation occurs with one dopamine agonist, it will typically reoccur with another so trying Mirapex was not a good idea and restarting the original one that did cause it is a terrible idea.

Horizant would be an excellent choice and it is likely that you may be able to convince you local neurologist to prescribe this drug. However, many insurance companies will want you to try gabapentin instead which is definitely not the same (despite what they will try to tell you) and usually does not work very well.

If the Horizant or gabapentin do not help you, then you would be a candidate for opioids. We typically use methadone or oxycodone as they do not contain acetaminophen (Tylenol) which does not help RLS so can only cause side effects with long term use.

However, I am not sure that we will be able to convince your local neurologist to prescribe opioids. My green book would be helpful (a second edition which covers Horizant and Neupro is due out in the very near future) but I am attaching a recent article that I wrote that summarizes current RLS treatment.

Good luck but you may have to travel for adequate treatment.

Sent: Tuesday, December 11, 2012 6:49 PM
Subject: oxycodone vs. methadone

I have been following the letters and responses on this site for many years. Your feedback has helped tremendously , and I feel this is the one Place I can get the most up to date information on RLS and its treatment options.

After 4 to 5 years of Requip use ,suffering thru augmentation, and the terrible withdrawal symptoms once I stopped using it, I have , for the last 3 months or so, been taking 5 to 10 mg. of oxycodone each night before bed to relax the symptoms. Once I have fallen asleep, I usually can manage to get thru the night. I usually start with 5 mg. take a hot bath , and then try to get to sleep before the symptoms return. Each night is trial and error, jumping between the 5 to 10 mg. of oxycodone till I hit that sweet spot that allows me to relax long enough to get to sleep. I am constantly worrying about developing a tolerance for the drug , leading to higher doses for an equivalent response. I usually do not get complete relief from the symptoms In the 5 to 10 mg. range, but as long as I get that window where I can fall asleep, I am dead set against increasing the dose.

The reason for my writing is I am due to see my doctor 2 days from now to discuss my current situation. My doctor is not an RLS specialist, but was very open to prescribing the 10 mg per day of oxycodone for me when I told him this was an approved treatment , and that I was constantly researching ongoing treatment options for RLS. In checking your site, I have been hoping for a new non opiate drug that I might suggest to my doctor, to jump off the opiate, but so far except for maybe Horizant, there does not seem to be any new miracle drugs that have surfaced.

Since I am taking oxycodone would it be worth suggesting to my doctor we try methadone in place of the oxycodone. Again I am not looking for an amount that gives me instant and long lasting relief, ( being afraid of hitting that dependence/tolerance level), but since you seem to favor longer acting methadone over oxycodone, I thought it might be worth a trial. If you think this makes sense , what dose ( taking it only at night before bed) would you suggest that would be a good starting point, or one that compares to the current 5 to 10 mgs. of oxycodone I currently take.

John E.

Medical Reply

Although we are always concerned and worry about tolerance/dependence occurring when prescribing opioids, you are the type of patient who is ideal for this drug. The more a patient himself (or herself) is concerned about developing dependence on opioids, the less chance of that ever occurring. The patients who are more cavalier about using opioids are the more worrisome ones as they may more readily advance their dose to higher levels.

Patients who have no history of drug abuse (and especially those like you with dependence concerns) can typically go even higher (around 30 mg/day) without much (if any) concern about tolerance/dependence occurring. However, one of the tricks to avoiding tolerance/dependence from occurring is to keep the dose at the exact level that just eliminates RLS symptoms (and you are obviously very close) and not increasing above that limit on a regular basis.

In your case, you might want to try 7.5 mg (one and half tablets) every night and that might work more consistently without you having to alter your dose on a day to day basis. Methadone might work better as most patient respond better to it (and it tends to last longer per dose and that may or may not be something helpful to you) but as you are on a low dose of oxycodone, this change is optional and might not make a big difference (you might need only 5 mg for full control of your RLS).

Adding Horizant might help you reduce the oxycodone dose and there is a small chance that you might be able to eliminate it completely. The only way to find out is to try it.

A Reply from John

Sent: Wednesday, December 26, 2012 9:52 PM
Subject: RE: oxycodone vs. methadone

As indicated below I have been using the oxycodone on a nightly basis, and since your last reply , have settled in on the 7.5 mgs taken once a day just before bed. I have discussed my use of the oxycodone with my Doctor, and he is content on continuing to prescribe the drug , if it continues to control my RLS symptoms.

For the last few weeks, I have noticed that during the day, ( late morning to early evening) I tend to feel “off” with a slight nauseous feeling, and a slight headache especially after I eat. Along with this I tend to feel a bit tired and somewhat anxious, but nothing that has been acute enough to make me want to go back to the doctors. I have ignored this since its not an overwhelming feeling, but I got to wondering if , since I take the oxycodone only once a day, and have been for a number of months now, that I may be experiencing some type of minor withdrawal symptoms , since its 24 hours between Oxycodone doses. Could this be possible in your opinion.

I was managing the RLS without the oxycodone in the past, and using the drug makes if easier to control the symptoms, but if its possible I am experiencing some type of withdrawal during the day, I would be open to stop taking it for a week or so to see if I feel better during the day. I just wanted to get your thoughts on this to see if you think it would even be possible or probable that the oxycodone use was causing my day time symptoms.

Secondly , as I mentioned before, prior to augmentation, the Requip worked wonders for me, and I was curious if you have ever used a type of treatment where you would take the Requip for a short duration, ( such as a few weeks to a month) then stop it, and jump over to the opiates for a similar period . I ask this because the Requip worked very well for me Prior to augmentation, and by using this switching process between the 2 drugs, it might avoid the onset of augmentation , making each of the drugs more effective when taking them ,since I am not taking either one for an extended period of time.

John E.

Medical Reply

I cannot assess your possible withdrawal symptoms other than noting that it rarely occurs with low doses of opioids and your symptoms are not typical of withdrawal (but anything is always possible, of course).

Restarting Requip with almost definitely cause augmentation to recur within a few weeks (or possibly longer). However, even if you stop the medication before augmentation occurs, there will be a marked worsening of your RLS upon stopping the Requip that will require more medication to treat those symptoms. It is better to come up with a plan that will work on a regular basis such as a small dose of an opioid (and you can try a few different ones to see which works best) combined with an anticonvulsant drug like Horizant or Lyrica.

Sent: Thursday, December 13, 2012 9:06 PM
Subject: RLS and sleep

Over the years I have taken a myriad of RLS medications such as Sinemet, Mirapex, Requip et. al. I believe I have been fortunate to have had relatively knowledgeable caregivers with respect to RLS. I currently take 800 mg of Neurontin 2x and this seems to work quite well with respect to controlling my RLS. Higher doses of Neurontin actually seem to make my RLS worse. I also am prescribed hydrocodone (500 mg 2x) for nights when the RLS gets out of hand. Sometime I can go weeks without needing one tab and at other times I may need 1 to 2 tabs for several nights in a row. My dilemma is not so much the RLS as it is sleep and I know I am not alone in that respect. Even on nights when the legs are good I regularly cannot get to sleep (3 hours sleep per night is a common occurrence). And the longer I am awake the more likely it is that the RLS will flare. If I could fall asleep in say 15 minutes or so I probably would not notice the RLS. On nights when I need to take the hydrocodone I may as well forget about sleep as while the hydrocodone does a good job of eliminating the RLS symptoms it is a recipe for insomnia. So, it is a double edge sword.

In the past, I have been prescribed Klonopin which worked well for helping me sleep but I could not keep increasing the dose forever so that came to an end. Titrating down off the Klonopin was extremely difficult and not something I would look forward to doing again. I have a script for Ativan which I take infrequently-perhaps 2x per month or less. I take this when I have had several nights of virtually no sleep or when I absolutely need to have some sleep in order to perform a task the next day such as driving my spouse to a specialty hospital approximately 2 hours away.

My primary care is a bit reluctant to go with a daily use of the Ativan as I think we both know that eventually I'll have to wean off it and that will again likely be a difficult task for me. I have had adverse reactions, near hospitalizations, from Ambien/Ambien cr. I have tried several of the other sleep meds and they do not seem to have a lasting impact. I have tried the melatonin, teas, etc and those kinds of things and have worked very hard with respect to sleep hygiene. The Neurontin does not make me the least bit drowsy. In general, it seems that lots of things that seem to make people sleepy have somewhat the opposite effect for me

I do not live in a medical marijuana state otherwise I might consider this avenue with respect to sleep. As I said, at present, I think the RLS is quite manageable but not the insomnia. I have had a sleep study and do not have sleep apnea. I am in my mid-60's and find that with the passage of time I am becoming more apprehensive about getting to sleep and to be frank 2 and 3 am in the mornings are becoming quite lonely and a bit trying. Just wondering if you might have other thoughts with respect to the sleep issue.

Nancy

Medical Reply

Your problem of insomnia is very common amongst RLS sufferers even after their RLS symptoms are relieved by medication. You are correct to be wary of Ativan as it is in the same class as Klonopin and has a potential of causing tolerance if taken daily.

You should see a good sleep specialist who treats a lot of insomnia. CBT (Cognitive Behavioral Therapy) may work very well for you. You could use a drug like Ativan 3-4 days per week without concerns of tolerance or dependence occurring. Rozerem is another drug to consider but your mileage may vary.

Marijuana might help RLS but may not help you sleep.

Sent: Tuesday, December 18, 2012 12:34 PM
Subject: Mirapex (pramipexole) and Ambien

I have been taking Mirapex about a year now and find that my RLS has become much, much worse. Since Mirapex takes a couple of hours to become effective, I take it about 8 p.m., when I am not having any RLS symptoms. Within less than 5 minutes after taking the Mirapex, my legs become very wiggly and I cannot sit still. This continues for an hour or more before settling down somewhat by bedtime.

My neurologist has prescribed Ambien to help me cut down on the Mirapex. (I was taking 2 Pramipexole  .25 mg tablets (one about 4 p.m., another about 8 p.m.) I currently take one .25 mg tablet of Pramipexole  and then one 10 mg tablet of Zolpidem  before bed. I have been doing this for several weeks.

However, when I try not taking the Mirapex and just taking the sleeping pill, I get terrible RLS and the Ambien doesn't seem to help at all. Any suggestions on what to do now? If your suggestion is an opioid, and I can persuade my doctor to prescribe one, how can I avoid the awful nausea that I get when I have taken codeine in the past.

Dwight C.

Medical Reply

There are a few issues and possible courses of treatment to consider in your case.

You likely have augmentation and typically we suggest that the dopamine agonist (Mirapex) be completely stopped (and usually never restarted). However, if you are doing reasonably well with the lower dose of Mirapex at .25 mg with Ambien then you might continue to do well for some time. So you may consider staying on this regimen until things worsen (assuming that they don’t stay the same).

You could also consider trying Horizant and seeing if this helps you further decrease or eliminate the Mirapex. This might also keep your RLS under control indefinitely.

If you do decide to get off the Mirapex, you will likely need an opioid. To prevent nausea you must be careful as most of the common anti-nausea drugs tend to worsen RLS. However, Zofran or Kytril (taken about 1 hour before the opioid) should completely eliminate any problems with nausea.

Sent: Saturday, December 22, 2012 7:44 AM
Subject: Help for my RLS

My doc just switched me to 1 mg Klonopin. Today is the first day I’ve tried it. It made me a little drowsy, so I thought I’d be ready for sleep. But read horror stories of mixing it with Ambien so I only took half my normal 10 mg dose. Little sleepy. Then the restless legs kicked in and now I’m all “twitchy”. I gave in and went back to my .75 mg dose of ropinirole that hadn’t been working well, which is why the change But I feel awful now because my legs wont’ stop and even my arms have started to a degree. I don’t want to take more meds.

Ruth S.

Medical Reply

First off, you need to see a sleep doctor or neurologist who has expertise for treating RLS and knows all the drugs very well.

Klonopin is not an RLS drug and is only effective for RLS as a sleeping pill. With a greater than 40 hour half-life, the drug stays in your system for a very long time often causing daytime sleepiness especially when taken regularly. Ambien is a much better sleeping pill despite it not working very well for you right now. Furthermore, adding Klonopin to Ambien is simply increasing the dose of Ambien beyond what should be taken. Both drugs act upon the benzodiazepine 1 receptors that promote sleep (Klonopin also acts on the benzodiazepine 2 and 3 receptors) so those drugs should not be combined.

Since it sounds as if the ropinirole is causing augmentation (worsening of your RLS from taking a dopamine agonist drug like ropinirole), you should have your RLS treated with other medication such as Horizant or opioids and once the RLS is under control you should sleep much better.

Sent: Monday, December 24, 2012 12:34 PM
Subject: RLS

I am a desperate man. I am 74 years old, retired for a career in health care and perplexed by what I assume is a case of Restless Leg Syndrome.

A number of years ago, I notice a peculiar feeling in the sole of my feet. It was a ticklish sensation which occurred almost exclusively on the right, and happened mainly while I was driving. I do not recall the sensation happening at bedtime or during sleep. This was all happening about 35 years ago, and the only action initially was to stamp my foot on the car floor.

Subsequently, the feeling waxed and waned. It was very annoying when it occurred, but very troublesome. I do recall now that I was serving as the assistant administrator of a fairly large hospital at the time, and when I one day mentioned it to a member of our Medical Staff, he listened carefully, checked my reflexes, and gave my a prescription for Darvon. I took Darvon for quite a while, and it seemed to solve the problem. The term “restless leg syndrome” was never mentioned. Over the following years, I had a good bit of surgery: arthroscopy of knee, carpal tunnel release, reduction of fracture with internal fixation of my right wrist, cervical fusion at C4,5,6, and a total knee replacement, and a stent to my right coronary artery. I asked for and received pain medications after each of these procedures, and over the years consumed a lot of hydrocodone, although I rarely took more that 30 mg. in a day.

Along the way, I had several spells of lumbar spinal stenosis, and this summer (July, 2012), I had a minimally invasive decompression of at two levels of the lumbar spine. Once recovery was complete, my doctor and I decided that I needed to stop taking the hydrocodone. . Since I had never taken very high dosages, albeit it over a number of years, I was able to withdraw from the drug with only minor symptoms – runny nose, sweating, and some nausea. However, the feeling in my foot came back, and I suddenly could not relax or sleep very well. Now, I went online, and found the term “restless leg syndrome”. I seem to fit the picture perfectly, although I admit I have the worst case of second year medical students disease, and my mind can produce any symptom or horrible disease.

Nonetheless, my doctor started me on Requip (0.50 mg at bedtime), and restarted the hydrocodone, again in low doses. If I take the Requip as prescribed, and take the hydrocodone (0.5 mg three times a day) as he ordered, the my feelings are pretty much resolved. I need to add at this point that I have severe osteoarthritis in my right knee, and it is my right foot which is most affected by the symptoms. My left knee was replaced, and it only occasionally displays any symptoms.

At last, I come to my question. I have begun to experience the :sleep attacks” some people describe as a side effect of Requip. For instance, at a business lunch today, I was looking directly at the speaker, but had struggle to stay awake. I have also been forced to be extremely careful when driving, but I have not fallen asleep.

My question is two-headed. First, could it be the lack of sleep I have been experiencing which I causing my daytime sleepiness, or is it almost surely the Requip? Second, would the hydrocodone cause my sleepiness in conjunction with the Requip and the poor sleep. It is the possibility of a “sleep attack” which concerns me the most.

The actions I have taken are:

1. I have stopped the Requip although I would consider taking a half of the 0.5 tablet if I could not get to sleep otherwise.
2. I am using ibuprofen for pain;
3. I have an appointment with my doctor next week to explore other medication options

Finally: first, is there anything else I can do? Second, what medications should I ask my doctor to explore: Lyrica, gabapentin, Klonopin?

Richard H.

Medical Reply

It is impossible to determine what exactly caused your daytime sleepiness. As you have correctly conjectured in your email, there are several potential causes and it is likely that they all may have contributed somewhat but the only way to figure out how responsible each of those causes may be would have been to eliminate one at a time and then see what the effect of each one alone has on your daytime alertness.

However, at this time it is very reasonable to stay away from the dopamine agonists (Requip) and opioids (hydrocodone).

Treatment options that would be acceptable at this point do include gabapentin and Lyrica. However, gabapentin does not typically get into the blood stream very well and is quite unpredictable. I prefer using Horizant (which is approved for RLS) as it delivers gabapentin in a much more reliable and effective fashion. The only concern for those who metabolize the drug slowly might be next day sedation (which of course is one of your concerns). Lyrica has a shorter duration of action and works very well but is not FDA approved for RLS so may be more expensive to use.

You could also consider tramadol for evening/nighttime use as it has a fairly short duration of action (4-6 hours) and should not hang around the next day. Although it is typically classified as an opioid it is not really in that class of medication and tends to cause very few side effects (and also helps RLS for most sufferers).

Klonopin is a very poor choice to treat RLS as it has a very long half-life (over 40 hours) and would be at very high risk for causing next day sedation. Ambien or Lunesta are much better choices to help any insomnia problems (RLS related or otherwise) as they have much shorter half-lives and should not cause next day sedation.

Eventually, you could retry Requip if the above options do not work out for you. However, the correct starting dose is .25 mg and with your history, you might not want to go any higher.

Sent: Friday, December 28, 2012 3:14 PM
Subject: Horizant for RLS

I have been on Mirapex about 18 months and have experienced terrible problems with augmentation. I have managed to survive stopping Mirapex, with the help of Oxycodone, which presented its own set of problems. I stopped taking the Oxycodone a week ago because of stomach pains and gastro upsets. Do you think I would have a better chance of help with Horizant, because it appears that I will continue to have the RLS. I was so hopeful than once I was off Mirapex I would have just the small amount of RLS that started my whole nightmare. However, as of this time, approximately 1 month after stopping Mirapex and a week after stopping oxycodone, I still have RLS as soon as I try to sit down and relax in the evening. No more reading, doing handcrafts, sitting still. Do you think there is any chance that my condition could still improve, given more time? I could sure use some encouragement, if there is any to be found.

Dwight C.

Medical Reply

It may take 2-3 months of being completely off Mirapex (especially if you were on a high dose previously) for the augmentation problem to go back to baseline (where you were before starting the Mirapex). Horizant may help somewhat but most often is not as potent as opioids for treating augmented RLS symptoms.

Another option is to try different opioids as you may not experience the same gastrointestinal side effects from other opioids (such as methadone, levorphanol, etc.).

Sent: Saturday, December 29, 2012 4:56 PM
Subject: medication

Is cyclobenzaprine 10mg one of the contraindication medications? I am having strong spasms in the right foot and it was prescribed.

Sylvia B.

Medical Reply

Cyclobenzaprine (Flexeril) is not one of the drugs that worsens RLS. However, if it makes you sleepy during the daytime (a common side effect), it could result in some increase in daytime RLS symptoms.

Sent: Tuesday, January 01, 2013 12:03 PM
Subject: RLS symptoms

Hello my symptoms for RLS are becoming more severe each day. Now having painful spasms of the right foot; It reminds me more of MS than anything. Do you think this should be further investigated?

Sylvia

Medical Reply

Spasms of your foot and tremors are not due to RLS so you should see a movement-disorder neurologist who should be able to sort out that problem. The neurologist should also be able to treat your RLS.

Sent: Wednesday, January 02, 2013 10:14 PM
Subject: Horizant may help RLS?

I started getting pain in my legs at night one year ago, and it was exactly like the pain I had while pregnant 12 years ago. I have been going to my family doctor, who first prescribed Mirapex, but this keeps me awake all night. I have been taking Flexeril and Vicodin at night, but now have to go back in a month for another appointment, as my doctor does not want to call in this prescription any more. I am considering asking him about Horizant, as it is not an opioid drug.

Do you think this would be a good one to try? My doctor did say I have RLS at first, but then he kept testing me for other causes for my leg pain at night. All the other tests were negative, so I hope he just sticks to the RLS diagnosis. Thank you for all the information on you forum, and I hope my doctor will at least let me try the Horizant because my legs hurt at night and I have to keep waking up and moving around to find a position for my legs that eases the pain and nerves jumping in them.

Claire E.

Medical Reply

It does sound as if you have RLS but of course to fully establish that diagnosis would take more time (however, you can determine the diagnosis by seeing if you fulfill the 4 diagnostic criteria on our website).

Horizant is a very good choice for RLS and it certainly is worth a try. Neupro is also worth considering although it is somewhat similar to Mirapex but may not cause insomnia as it is slowly released from a patch.

Sent: Tuesday, January 08, 2013 1:17 AM
Subject: Tramadol and restless leg syndrome

It’s been some time since you wrote some information on tramadol use. I am 63 years old and have been diagnosed with RLS I have taken Gabapentin or Neurontin, Mirapex and Requip. Not all at the same time. Currently I am taking Requip or ropinirole with gabapentin twice a day a small dose with gabapentin in the mid afternoon to stave off the RLS symptoms and a higher dose of Requip before bed. I am building up a resistance to the drug and was getting worried about that. I was seeing a doctor about some arthritis pain and pain due to a knee cap removal I had years ago and he prescribed tramadol 50mg two tablets 3 times a day. I started taking this with the Requip in the afternoon and before bedtime. Prior to starting this I needed to be very careful to take the Requip at the right times. When I added tramadol it boosted the benefit of Requip and I didn’t have to worry about the exact time to take it.

I am in the Philippines and because I am diabetic we have been doing some tests that had me reduce the tramadol and use paracetamol or acetaminophen in a combination tablet called dolcet. Because I went from 100mg 3 time a day to 37.5 mg 3 time a day, I have had more flare ups with the RLS symptoms. I don’t know if everyone would have the same response as I am having, but reading about tramadol and some of the new therapies for RLS it makes sense to me that it helps boost the beneficial effects of ropinirole/Requip.

William Karl B.

Medical Reply

It is well known that tramadol is a very good treatment for RLS symptoms. While on the higher doses of tramadol, your RLS was controlled by that drug so that you did not need as much Requip. It is very likely that you are developing augmentation from Requip (a worsening of your RLS from taking Requip) and lowering (or even better, getting off) the drug is a very good choice of therapy.

You could also increase your gabapentin dose (assuming that it is not too high and that you do not have any side effects such as sleepiness with gabapentin) or change to Lyrica which works even better.

Sent: Wednesday, January 09, 2013 8:31 PM
Subject: Ferritin levels

I have written you before and you sent me some wonderful information. For that I thank-you. Based upon this information, I asked my physician to test my ferritin levels. I had augmentation from Requip and Mirapex. He hesitantly ordered the test but told me it was not necessary because last year's blood work showed a good iron count. I got the results from the lab and my ferritin level was 3.6. Obviously my lab measures it different than what I have seen in articles, but normal levels per my lab are 8-25. I know I need to get this up -but with RLS I know I should get it in the higher side.

Do you know what I should level I should strive for? My neurologist does not want to manage this and my GP doesn't seem to understand this well enough to give me a range.

Sandy B.

Medical Reply

The reason to get a serum ferritin level is that it measures the iron stores which can be low even when the other iron measures that most physicians typically order are still normal. The ferritin is a much more sensitive and better test for the true level of the body's iron status.

Although most labs report that ferritin levels of over 8-20 are normal, for RLS patients we strive to get the levels above 50-75. Your level of 3.6 is very low and should respond nicely to oral iron. Normally we suggest 325 mg of ferrous sulfate (65 mg of elemental iron) 3 times daily, 1-2 hours before food and with Vitamin C 100 mg or orange juice (the acid helps you absorb the iron much better). Your physician should monitor you ferritin levels (and serum iron) every 2-3 months.

Once you get the ferritin level above 20-25 range, you will find that the ferritin levels increase very slowly as the body then decreases the ability to absorb iron. Some patients need intravenous iron to get their ferritin to adequate levels.

Sent: Thursday, January 10, 2013 11:57 AM
Subject: Switching to Horizant

I have had RLS for the past four years and have been taking Mirapex for the whole time until recently switching to Requip. I experienced augmentation on these drugs in the form of increasing severity of symptoms and have had to up the dosage several times up to .75 mg of Mirapex and I am now on 1mg of Requip. I would like to switch to Horizant and get off the Requip.

What would be the most painless way of switching between the two drugs? Do I need to wean down on the Requip or can I stop cold turkey?

Taylor

Medical Reply

Unfortunately, once on dopamine agonists it is very hard to stop them. Now that your body (and you dopamine receptors) are accustomed to being given dopamine agonist drugs, they will rebel and cause markedly worsened RLS symptoms if you decrease the dose or stop them. After adding Horizant it may be easy to decrease the dose of Requip by a little but sooner or later (and especially when you stop the Requip completely), your RLS symptoms will worsen and Horizant will likely not be adequate to control them by itself.

What I usually do is stop the dopamine drug cold turkey (some like to taper it off slowly but I find this easier) and start a potent opioid (oxycodone, methadone) to treat the worsened RLS symptoms. After a month or two, the RLS symptoms will calm down and then I start Horizant to see if I can then eliminate (or at least reduce) the opioid.

Sent: Friday, January 11, 2013 7:25 PM
Subject: RLS

I was taking Requip with good results for about 4 plus years ,increasing the dose and living with the augmentation that I was experiencing until I got to the point where it just was not working and I didn't want to increase the dose further. After a pretty rough period getting off the Requip, based on information I gleaned from your book, I now take 7.5 mg of oxycodone before bed to quiet the symptoms so I can fall asleep. This dose does not completely relieve the symptoms, but in combination with hot baths or showers usually gives me a window where I am able to get to sleep. I try to keep the dosage low so I can avoid any possibility of dependence.

I was researching the net for any new developments in treatment or cures for RLS and came across a couple of articles on Neupro as a treatment. In looking on the California RLS group, reading letters and responses from you, I didn't see any reference to Neupro so I wanted to write to get your thoughts on the drug.. Would this be in the same family or work in a similar way that Requip and Mirapex work where augmentation would be likely, based on my previous experience with Requip? I am always looking for better ways to control my RLS and it would be nice to do so without an opiate if possible.

John

Medical Reply

Neupro is a much better dopamine agonist than the shorter acting Mirapex and Requip. Since it is a dopamine agonist, it may cause augmentation but the incidence is much less than the older dopamine drugs and the augmentation does not seem to be as bad (that part is based on my own clinical experience so far). We have very little experience using this drug in patients with a past history of augmentation with Mirapex or Requip so it is hard to say if it should be used in that context (which of course is your situation so caution would be advised). In someone with a history of augmentation, I would only go up to a maximum of 2 mg rather than 3 mg.

Another choice in your case would be to add Horizant which might help control your RLS symptoms much better without any risk of augmentation. You might even be able to decrease the dose of oxycodone.

Methadone often works better than oxycodone and might control your RLS without even adding another drug.

Sent: Thursday, January 17, 2013 8:40 AM
Subject: Mirapex causes heart failure?

I have been on .25mg Mirapex for many years for my RLS. I have now read that it can cause heart failure. Can you elaborate on this issue?

Bernice P. in Florida

Medical Reply

The FDA reviewed the studies on Mirapex and found that there may be a mild increase in heart failure in people on Mirapex. However, these conclusions are not confirmed and may not be valid. For now, I would not worry about heart failure while on a low dose of Mirapex but you might inform your doctors of this potential (but not yet proven) risk and they can keep on eye on your cardiac status.

Sent: Thursday, January 17, 2013 12:14 PM
Subject: Traquilmed for RLS?

I would value your opinion on a new product I have been reading about called Tranquilmed. It states that clinical trials are quite positive and promises money back if it does not help.

Sue M.

Medical Reply

I would not recommend that you waste your money on this product. It has not been tested in any proper medical/scientific fashion and all their “clinical trials” are simply anecdotal patient reports of people who thought that the device helped. The problem with that “clinical trial” type of data/information is that it is not placebo controlled and there is a very strong placebo effect with any RLS treatment (which is why so many patients write in that sleeping with soap in their bed sheets helps).

They offer to refund your money since the majority of people never take advantage of this offer so they do well despite the offer.

Sent: Thursday, January 17, 2013 8:27 PM
Subject: gabapentin regular vs extended release (Gralise)

I have used 3 sample packets of Gralise which has helped my painful RLS. I've had no side effects. My insurance won't cover gralise but will cover gabapentin. Is it as effective? How should i handle dosing? I also take clonazepam before bed. I'm afraid to take any drug which may cause augmentation. I had a sleep study which showed no limb movement disorder but mild sleep apnea. Could that be causing my leg pain?

Linda

Medical Reply

Gralise is a pill that slowly releases gabapentin so taking gabapentin might work just as well. Unfortunately, gabapentin is not well absorbed into the body (and this varies considerably from patient to patient so it is hard to predict how much anyone needs) and the doses needed vary tremendously.

Clonazepam is not an RLS drug but simply a benzodiazepine (like Valium or Ativan) sleeping pill that is very addictive and has a 40 hour half-life so typically causes next day sedation. It is one of the medications that I like my patients to avoid completely.

Sleep apnea (mild or severe) should not cause any leg pain (but sleep apnea is made worse by clonazepam).

A Reply from Linda

Sent: Saturday, January 19, 2013 1:03 PM
Subject: Re: gabapentin regular vs extended release (Gralise)

Many thanks for this info, it is very enlightening. On the night of my sleep study, I took 1mg of clonazepam (I usually take .5) in order to fall asleep much earlier than I normally do, with repeated assurances this would have no effect whatsoever on the sleep study results.

It sounds like you are suggesting clonazepam may well have contributed to the finding of mild apnea. Situation now is, based on this finding, it's suggested I use a mask to sleep. The thing is, I have never had ANY of the symptoms of sleep apnea, aside from snoring.

The sleep study was suggested because in evaluating my probable RLS, my doctor noted that I am petite and slender and have a small neck as well as interior throat area, so she wondered if there could be obstruction during sleep. The presumption is clearly that an obstruction causing apnea could be linked to my leg pain. Therefore, the plan is to wear the mask, gradually discontinue the gabapentin and then see if my leg pain goes away. I would value your thoughts.

Linda

Medical Reply

Benzodiazepines like clonazepam are well known to worsen sleep apnea and it is very likely that you may have less (or no) sleep apnea without having taken 1 mg at bedtime prior to your sleep study (Ambien typically does not worsen sleep apnea). If you have no daytime sleepiness (although many patients are not that aware of how sleepy they are during the daytime as it is harder to perceive than you may realize), then treating you with CPAP for mild (or possibly non-existent) sleep apnea would likely be of no benefit.

As stated in my previous email, even if you had severe sleep apnea, it would be extremely unlikely that using CPAP (or any other sleep apnea therapy) would have any benefit on your leg pain.

Sent: Friday, January 18, 2013 6:05 PM
Subject: Tramadol with SSRI's

I've written to you here before and your advice has been very helpful. I'm a 65 year old male and was diagnosed with RLS in 2000. I successfully treated it with one 0.25 Mirapex taken daily ( occasionally taking two tabs) until a year ago when I had to stop due to augmentation. I went off the Mirapex and began taking one Horizant daily but had to supplement it with one 50 mg Tramadol. I eventually stopped taking the Horizant due to cost, and started taking two 50 mg Tramadol tablets every evening around 7:30 pm. The Tramadol has been working great. I'm practically free of any RLS symptoms.

My problem lies with my anti-depressant meds. When I was on Mirapex I was also taking 20 mg Lexapro. I stopped taking the Lexapro when I was going through my augmentation and when I switched to Horizant and Tramadol. I was concerned that the Lexapro was worsening my RLS, when in fact, I think it was the augmentation. I haven't gone back on the Lexapro since. I tried Wellbutrin but that didn't help the depression. I need an anti-depressant and would like to go back on the Lexapro because it worked for me; however, I've read that there is an increased risk of serotonin syndrome when you take SSRI's with Tramadol.

I would essentially be taking the 20mg Lexapro and 100 mg of Tramadol 12 hours apart, so perhaps that would make it okay? I would hate to have to stop taking the Tramadol because it works so well, but if I can't take the two together I may have to go back to Mirapex or Horizant. I know the Mirapex would work, but I probably would go through augmentation again at some point. I'm afraid the Horizant alone won't work for me, and taking two Horizant tablets would really be cost prohibitive for me. What is your opinion on taking the Tramadol and Lexapro as I mentioned. If I shouldn't, then what do I do for my RLS if I need to go back on Lexapro?

Mike B.

Medical Reply

Taking tramadol and Lexapro together does have a mild increase in risk but most patients do reasonably well. This is something that you may want to discuss with your current doctors as they could follow you for potential problems. Another solution would be to switch from tramadol to oxycodone or methadone (very low dose) which would have no interaction with the Lexapro and likely keep your RLS completely at bay without much concern of side effects (especially at the low doses that you would need).

Sent: Saturday, January 19, 2013 3:20 PM
Subject: Restless legs cured by lying on stomach

Both my mother and I have suffered from RLS since our early 20s, with symptoms worsening during pregnancy. We have recently discovered that lying on our stomachs relieves the symptoms and enables us to sleep. If I start to feel RLS in the evening, I go to bed and lie on my stomach and cuddle my pillow. The urge to move my legs disappears instantly. Is this a well known cure and can you explain why this is working?

Sarah G.

Medical Reply

Position seems to be very important to some RLS patients and they will often go to great lengths to achieve those positions to help relieve RLS symptoms especially when trying to fall asleep. However, I have only heard of a very few who benefit from sleeping on their abdomens rather than side or back. However, sleeping on your abdomen is not a great position (based on orthopedic considerations) for sleep so hopefully, you change to your side or back when actually sleeping.

I will post this info on our website for other RLS sufferers to read and see if many other ones (that I am not aware of) share your experience or may benefit from it.

Sent: Tuesday, January 22, 2013 6:58 PM
Subject: Getting pregnant with RLS?

I've been diagnosed with moderate-severe RLS a couple of years ago, though I've been struggling with it since childhood (I'm 31 years old now). I've been on medication for almost 5 years now and am now considering getting pregnant. My concern is coming off my medication and still being able to function at work. Currently I'm on 50 mg of ropinirole, 50 mg of Lyrica and 2 Tylenol 3's daily. It's taken me quite some time to find this dosage that works for me, with the help of my respirologist.

There is little information that I've been able to find on which medications are safe to take during pregnancy and so I'm wondering if you have any information that could help me wean off my medication. I'm mostly afraid of reducing my ropinirole as this has proven to be a life-saver in my day-to-day functioning.

Ly-Anne

Medical Reply

Ropinirole (Requip) is a Category C drug (as are all the other FDA approved RLS drugs) so should not be used during pregnancy. Weaning off or stopping will be more difficult than you may realize as not only will you be missing a key part of your RLS treatment but once you have been on ropinirole for a while, stopping it will make your RLS get much worse than it ever was in the past (and this may last for a few months). Furthermore, RLS typically gets worse during pregnancy especially the last trimester.

Lyrica is also Category C so should be discontinued during pregnancy. I am not sure why you are taking Tylenol as it has no effect on RLS and at that dose could in the long term cause liver or kidney problems.

What I typically prescribe for my patients with RLS is low dose methadone or oxycodone which (in low dose) are Category B drugs. They also have a history of being used in heroin addicts who get pregnant in much higher doses. These drugs typically will resolve all your RLS discomfort (despite stopping the ropinirole and Lyrica). There are some issues with neonatal respiratory depression or opioid withdrawal (seen in the heroin addicted patients getting methadone) but I have not seen these problems so far in my pregnant RLS patient. Of course, you need to discuss these issues with your RLS doctor, obstetrician and neonatologist.

Sent: Wednesday, January 23, 2013 10:53 AM
Subject: RLS and Medications/Emotions

It seems that I have had RLS since birth and I am now 61. I have been taking Mirapex for 10-15 years. My dosage is .75 as I experienced augmentation. This seems to work for me to control the RLS. Since it makes me sleepy, I take 50mg of Tramadol on evenings that I have social or work events. Many to most nights I take Lunesta to facilitate better quality and length of sleep. My question now relates to a past drug and the possibility of a better drug regimen than I am now taking.

I took gabapentin for a few years and I flew through menopause without hot flashes and with a strong sex drive. About the third year I developed issues but wasn’t aware of when they came on exactly until the issues were severe. The issues were anxiety and then memory problems. These things caused the loss of a relationship and work problems. The day I could not remember street names was the day I knew I was in terrible trouble. I quit the gabapentin cold turkey because I was so scared.

I got books on anxiety and watched my business die back while I waited for my memory to come back. Eventually it did come back and I worked hard to cure the anxiety as well. My self confidence seems to have been injured and I cannot seem to keep it steady as before. I seem sensitive to pressure situations and do not always react calmly in business like I did for so many years prior to the gabapentin. My one concern with the Mirapex is that I have some compulsive behavior-my version is to shop. I return what I do not need, financially can pay for the items but have also seen that the problem could get worse more easily than I have felt it could before.

Are any of the medications that I am now on somehow affecting my emotional well being? Is there a reason to change any of my medications? This question relates mostly to the Mirapex as I have been on it the longest. My sister now takes a slow release med for RLS and is much happier with her results. I know little about the Neupro patch and wonder if it might help me.

I will go to my doctor here locally, but in the past, some insight from you has helped me to know what options that I should be considering.

Liz J.

Medical Reply

Mirapex at .75 mg is a high dose and may cause augmentation again in the future. The impulse control problems are dose related and you would likely do better on a lower dose. As an alternative you could change to Neupro which for the 1 and 2 mg doses should give you less dopamine effect (and likely less chance of impulse control problems).

An alternative would be to add more tramadol on a regular basis to reduce the need for dopamine drugs. You could also add opioids (like methadone or oxycodone) to decrease or even eliminate the need for dopamine agonists.

Horizant is another choice but as it turns into gabapentin, this might be a poor choice. Lyrica is another option but there is some concern as it acts on the same receptors as gabapentin.

Sent: Sunday, January 27, 2013 8:49 AM
Subject: Horizant maximum dose?

What is the maximum dose of Horizant I can take in 24 hrs I feel the 600mg helps somewhat but the other night I had to take a second one and I felt that worked better.

Candy M.

Medical Reply

Although the maximum dose of Horizant is only FDA approved at one pill per day, medical studies and clinical experience does support the use of 2 or even 3 pills per day (taken at dinner time). You should discuss these options with your doctor.

Sent: Sunday, January 27, 2013 11:17 PM
Subject: Restless leg syndrome and Gabapentin

My GP has prescribed Gabapentin on an initial diagnosis of restless leg syndrome, but I have noticed a worsening of my symptoms since taking this drug ( 100mg 3 times per day ). I have yet to see a neurologist although I am already seeing a neurologist for epilepsy who I will be seeing at the end of February.

Is it possible for this medication to make the symptoms worse ? I have also been waking up around 2am every night with sores on my heels so I am assuming my legs are moving a lot more than I am aware of when finally drifting off to sleep. My symptoms start as pain in my legs quickly progressing to a feeling of thousands of small bugs crawling under my skin from the knee down. I really can not afford to lose sleep because of my epilepsy.

Is it possible for my GP to prescribe me a different medication before I have seen a neurologist to ease these symptoms ?

Tina G.
United Kingdom

Medical Reply

Gabapentin typically improves RLS and rarely makes it worse so you must be having a strange reaction. The dose you are taking is quite low as most patients (depending upon age) need 300 to 600 mg per dose for relief.

Currently there are better drugs available. In the same class of gabapentin is Lyrica (pregabalin) which is more effective but may cost more. Mirapex and Requip are also effective but the Neupro patch is a better choice (if it is available). Your GP could prescribe these drugs but may not be familiar enough with them to be comfortable prescribing them.

Sent: Sunday, January 27, 2013 11:20 PM
Subject: Supplementing oxycodone with neuron tin or Horizant

In recent correspondence with you, I explained a slight concern with long term use of oxycodone for control of my RLS vs. potential dependence or addiction. Mostly I take 7.5 mg. per night about 1/2hour before bed. I use this in combination with hot baths to try and relieve my symptoms long enough for me to fall asleep. Sometimes this works ,other times I have to get back out of bed and occupy myself till I feel tired, and I get that window of relief where I can get to sleep. Once I get to sleep ,even though my sleep is restless, I can make it through the night without taking more oxycodone. That window of relief often comes around 2 hours after I take the drug which, in itself, doesn't make sense to me that it can take that long to kick in.

I used Requip successfully in the past till augmentation set in , which led to my switch to the oxycodone. I know from reading your letters to others you prefer methadone over the oxycodone because it lasts longer , but before I switch to that, my up front goal is to reduce my need for any opiate by adding an additional drug such as Neurontin or Horizant.

Ideally, I would like to try the new patch Neupro which has been reformulated and approved for RLS treatment, but am a bit concerned with possible augmentation similar to my experience with Requip. I would like to see more feedback on this drug before trying it and taking that chance of it augmenting like the Requip did. For now , based on previous feed back from you, I would like to try the addition of either Neurontin or Horizant to my oxycodone to reduce or even possibly eliminate the need for an opiate, and possibly get better more consistent relief from my RLS. My doctor has very little experience with RLS and its treatments ,but knows I constantly research current approaches to treating it and is open to switching drugs to see how they work.

Could you suggest which of the two drugs ,Neurontin or Horizant you would add to the opiate and at what amount I should start at. If there is another drug altogether you would add other than the two above, that would be fine also. It would be nice to be able to reduce or eliminate the opiate, but its not something I have to do. if the opiate at the current or reduced level works, that would be fine. It's just that the opiate alone is not consistent in reducing my symptoms to allow me to go to bed without going thru my hot bath routine. I do not want to get to where I am taking elevated doses above 10 mgs. If at all possible.

John

Medical Reply

I typically add Horizant in your situation and very often it is quite  effective to reduce (occasionally even to eliminate) the opioids.  Gabapentin is much cheaper but in my experience does not work near as well (your mileage may vary).
 
Methadone usually works better if you want to stay with one drug but  otherwise, the above treatment with combination therapy is very reasonable.
 
 We still have little experience with using Neupro in patients who have  already had augmentation with the shorter acting dopamine agonists but some patients have done well with using low doses of Neupro. Given your history, it would probably be prudent to try Horizant first and  consider Neupro as the next option.

A Reply from John

Sent: Tuesday, January 29, 2013 5:58 AM
Subject: Re: Supplementing oxycodone with neuron tin or Horizant

In my case where I am now taking 7.5 mgs of oxycodone before bed , would you have me stay with that amount and add the Horizant, or cut the oxycodone back. In other words what amount of each drug would you start the combination therapy at. I am sure my doctor will go along with this treatment , it's just with his lack of experience with restless legs ,he may not even be aware of the use of Horizant for treating RLS.

I live in upstate NY and I have been unable to find a doctor who specializes in treatment of RLS , so for the time being its at least nice I have one who is willing to work with me based on my research and suggestions.

John

Medical Reply

There are no established guidelines for when to add Horizant when on an opioid. I typically do not push that treatment until the oxycodone dose is above 10 mg per dose or 30 mg per day (similar with methadone) unless the patient is having side effects with the opioids.

Some patients want to be on the lowest dose of opioids possible so we then institute the Horizant earlier. However, even Horizant can cause side effects so for some patients, using one drug may actually be simpler and better.

A Reply from John

Sent: Thursday, January 31, 2013 9:29 PM
Subject: Re: Supplementing oxycodone with neuron tin or Horizant

I am in the process of relating this to my doctor. I am currently wintering in Florida, and he is back in NY. I am not against staying with the "one" drug approach ,and continuing to use the oxycodone, I'm just afraid I will become tolerant to the 7.5 to10 mg. I now take at night. My thoughts are if trying the Horizant in the near future does not yield positive results then I can reintroduce the higher amounts of oxycodone again, assuming that during the trial period of Horizant, I cut the opioid way back to see how the Horizant works.

You also indicate the Horizant would be taken at dinner time ,which in my case would be around 6 to 7 pm, approximately 1to2 hours before my RLS kicks into high gear. I am not used to taking a drug before my RLS hits, which is why I presently take the oxycodone just before getting ready for bed when RLS is at its worst. Am I wrong to wait till RLS is bad before taking the oxycodone? I have thought about taking the oxycodone earlier, but with its relatively short time effectiveness ( 4 to 5 hrs.). I felt it would wear off early after going to bed or lose its effectiveness before I could get to sleep.

As it is now once I take the drug it usually takes a minimum of one hour to take effect and more likely 2 hours. I take it around 11 and usually by 12:30 the symptoms relinquish and I am able to get to sleep. Am I way out of line in my approach to taking the opioid?. I have thought about having my doctor switch me to methadone due to its being effective for a longer period, but since this too is an opioid, I felt the Horizant was worth a try first.

John

Medical Reply

It is always much better to take your RLS medication before your symptoms occur rather than after. It typically takes a smaller dose to prevent RLS symptoms than to relieve them once they are active. Since methadone has a longer half-life and action, it is often a better choice to take earlier and last longer (then you can get by with one dose rather than two).

I have never seen an RLS patient get tolerant or dependent on oxycodone or methadone at 10 mg (or even doses up to about 30 mg/day).

Horizant works better when taken with food which is why we suggest that you take it at dinner time.

A Reply from John

Sent: Friday, February 08, 2013 8:53 PM
Subject: RE: Supplementing oxycodone with neuron tin or Horizant

I take 7.5 mg. of oxycodone before bed to reduce or eliminate my symptoms so I can get to sleep. It works fairly well , but doesn't quite get me through the night. I am considering asking my doctor to switch me to Methadone
because of the longer half life, and see how it compares to the relief I get from oxycodone. I know you indicate you prefer the methadone over the oxycodone. Is this because of the longer half life, or are there other possible benefits the methadone brings to the dance that oxycodone does not.

Would the substitution be just a switch from the oxycodone to the methadone and what mg. amount of methadone would I take that is equivalent to the 7.5 mg of oxycodone I now take. I would like to consider the Horizant substitution down the road, but since I am now taking the oxycodone earlier in the evening , before my symptoms peak per your recommendation, and its working better, it seems logical using just the one drug ,methadone, would serve me well.

John

Medical Reply

One of the reason that I prefer methadone over oxycodone is due to the longer action of methadone (8-10 hours) compared to about 4-6 hours for oxycodone. Furthermore, methadone seems to work better than oxycodone (more effective relief) and has fewer side effects for most users (remember, everyone is different so your mileage may vary!).

Usually, 5 mg of methadone may work as well (and longer) than 7.5 mg of oxycodone.

Sent: Wednesday, February 06, 2013 7:59 PM
Subject: methadone for RLS?

I have used fentanyl for 7 yrs to treat spinal fusion issues and have found it has also helped greatly my severe RLS symptoms along the way. however, after 7-8 yrs at the same 50mcg dose every 48hrs it now covers only
32 of the 48 hours then it is either withdrawal symptoms or RLS the second evening I am experiencing. all of this is after trying all benzos, Mirapex as high as 4.5 mg, augmentation etc.

Now I am told that low dose methadone may be my answer. however, why is it so important that I taper off all fentanyl first and then go an additional 10 days with no med help at all before I can have methadone introduced?  I am at 12 mg on tapering but have no idea how I will ever last 10 days with nothing why the 10 days?

Kathy P.

Medical Reply

Your issue with opioids is more complicated than you may realize. You are already tolerant (and likely dependent) upon fentanyl and switching to methadone may or may not be the correct answer. Your doctors may want you off all opioids for a while in order to reset your opioid receptors (the time length for this is really not known but I actually would have suggested
4 weeks completely off the fentanyl before starting methadone) to give the methadone a better chance of being successful at low doses.

A Reply from Kathy

Sent: Saturday, February 09, 2013 8:37 AM
Subject: After thought

I was just wondering if I would be muddying the waters of the methadone plan if I used .25 Mirapex (which I have not used since getting past 4.5 of Mirapex augmentation months ago) using it for a few days to get me
past the 10 days of no opiates?

Kathy P.

Medical Reply

Restarting Mirapex even on an intermittent basis might cause more problems and make it difficult to stop the Mirapex. You don't want to go down the augmentation route again.

Sent: Saturday, February 09, 2013 7:33 PM
Subject: Need advice on possible Requip/Neupro holiday

I live in rural Maine. My neurologist retired, so I have a new one with less experience. I have severe RLS/PLMD of about 5 years duration, with augmentation.

I had been taking 6 mg Requip extended release at night + one and a half 5-mg methadone pills, and by day was taking .5 mg Requip every 4 hours (7am, 11am, 3pm, 7pm). Side effects were severe constipation (daily suppository + lactulose + Metamucil + 4 stool softeners, and I'd still need an occasional
enema) and the complete shutdown of my sex life.

The new neurologist had me stop Requip & started me on a 2mg Neupro patch. I had 5 days near total insomnia withdrawing from methadone, using vacation time. The Neupro then got me through the day nicely but insomnia persisted. The next week I averaged two naps per night, total sleep about 3 hours, the rest spent walking around the house or lying down & enduring massive whole-body jerks. My sex life is once again excellent and I'm not constipated. However, because I have moderate to severe spinal stenosis, the jerks make me quite lame, and it's challenging to keep working my 9 to 10-hour days (I'm a neuropsychologist).

Last week the neurologist told me to use 2 Neupro patches (total = 4mg). I still awaken with whole-body jerks after less than 2 hours sleep, and am VERY lucky if I can grab a second night time nap. I've tried adding .25mg of the methadone at bedtime, but it's clearly not enough. After reviewing your book Clinical Management, I'm thinking of asking him if he'd take me off Neupro entirely, substituting either oxycodone (which my PCP prescribed before I saw the 1st neurologist) or methadone. It would be a drug holiday from dopamine.

My questions for you:

1) would this be worth trying?

2) how long might it take before I could taper the opioid (and get my sex life back!) & resume Requip or Neupro?

3) which opioid and dose would be best to start with?

4) when resuming a dopamine agonist, what would be the starting dose?
I'm assuming it would be far lower than my current dose, since my symptoms are likely the result of augmentation.

FYI, I've had recent blood work; all's well, iron is normal and I take levothyroxine nightly for mild hypothyroidism. I'm about to turn 66. He's trying to persuade me to try an iron infusion, but I think I'd rather live with side effects than risk anaphylactic shock.

Sharon S.

Medical Reply

You are very likely correct about the problem with augmentation due to you very high doses of Requip. Neupro is not potent enough to replace your Requip (as you have already found out from your experiences using the drug) as 1 mg of Neupro is roughly equal to about 1 mg (or so) of Requip. With your augmentation problem it would be best if you discontinued dopamine agonists for good. Restarting them in the future would likely result in the rapid return of augmentation problems.

Most patients do better on methadone than oxycodone but experiences can vary but you will need higher doses of opioids when stopping Requip (for 1-3 months as per my book). Usually about 1-3 months off the Requip, you will need less opioids as the dopamine receptors get reset (or that is what we assume is happening).

After a few months, your doctor may add Horizant (or even Lyrica) and you should then be able to further reduce (occasionally even eliminate) the opioids.

Iron therapy can be very helpful with the goal of getting your ferritin level (this is much more sensitive than iron levels which may be normal) above 75. We now recommend low molecular weight iron dextran (there are a few other IV iron preparations that are also quite good) that does not cause allergic reactions like the high molecular weight version used in the past (and should be quite safe and effective).

Sent: Sunday, February 10, 2013 11:09 PM
Subject: Neupro

Starting to have trouble with using Horizant (600 mg) and oxycodone (20 mg). It has not been as effective at keeping symptoms at bay. My doctor has suggested using Neupro in place of Horizant and keeping the Oxycodone.
Mirapex and Requip worked quite well but I eventually discontinued their use due to bothersome side effects and severe augmentation. For that reason I resisted doctors suggestion to try Neupro. One reason he suggested Neupro is because it works 24 hours and my current medication wears off at 2 and 3 in the morning. Since I value and trust your opinion could you give me your thoughts on use of Neupro?

Since Mirapex and Requip caused severe augmentation, am I right or wrong to be wary of Neupro? On your treatment page you report Neupro is very new for RLS treatment. Is there any updated info on how effective it is and possible concerns about its use?

Jim D.

Medical Reply

Although Neupro can cause augmentation, it typically does this less often than the short acting dopamine agonists like Mirapex and Requip. However, it is not clear whether starting Neupro after in a person with previous augmentation problems will result in augmentation with Neupro. However, caution is certainly advised.

A better approach would be to increase the dose of Horizant. Even though it is only approved for one pill per day, studies have demonstrated effectiveness and safety at 2 or even 3 pills per day. This would give you much longer and effective relief of your RLS symptoms as long as side effects do not limit their use.

If increased Horizant does not work (or is too expensive) then adding Neupro may be an alternative but I would still continue Horizant which should help keep Neupro at a lower dose. It is also thought that augmentation may be related to increased doses of dopamine agonists so using the lowest effective dose of Neupro may help stave off the appearance of augmentation.

Sent: Monday, February 11, 2013 6:46 PM
Subject: My RLS

I have been searching around trying to figure out what the problem is, but I can't figure it out. Over the past few nights my RLS has been getting worse, causing me to stay up to 1, 2, or 3 in the morning. I would be okay, but since I am young, I still have school and practically sleep in every class. I tried cutting out of caffeine, but no such luck. I get the same results with more exercising.

The thing I found out is that the more exercise I do, or the more tired I am, the worse it is. So in this case it just keeps getting worse because it keeps me up at night. I do not know what to do anymore.

Lexa F.

Medical Reply

It may be difficult to figure out why your RLS is suddenly worse but you may want to make sure that you are not on any new medication (prescription or over the counter). Although mild to moderate exercise helps RLS symptoms but vigorous exercise may worsen RLS.

However, you may want to consider treatment with Horizant or Neupro which may relieve your RLS symptoms.

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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 103.
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