Patient letters on RLS symptoms and remedies- Page 108

Sent: Wednesday, July 02, 2014 2:35 PM
Subject: Re: Treatment question (see previous letter Sunday, February 23, 2014 12:27:45 AM)

I'm back with some additional questions/concerns.

Since my initial e-mail I have stopped Mirapex with the help of oxycodone. I then tried Lyrica by itself and was unable to tolerate it during the day at 75-100 mg levels. I'm now only taking 50 mg every night which doesn't stop my symptoms so I have been supplementing it with tramadol and oxycodone. However, if I take 75-100 mg of tramadol to deal with breakthrough symptoms, I'm throwing up or very nauseated the next day and if I take 10 mg of oxycodone, I'm very nauseated and drugged feeling the next day. I think the problem is that I'm at too low of a dose of any of the meds to get relief throughout the night but I can't seem to tolerate higher doses of all three. From my past experience with surgeries and pain meds, they also made me sick then so it seems like I have trouble in general with painkillers.

I've seen a sleep doctor and he is the one who recommended that I try Lyrica with tramadol and then oxycodone after I was sick on the Tramadol. Now that I'm having trouble with both, he is recommending a sleep study before he makes any further medication changes. I don't understand how a sleep study would help guide medication decisions and he is basically refusing to do anything else unless I have a sleep study. Is a sleep study worth it?

I feel like I'm running out of options and almost long for the days of Mirapex because I never was nauseated by it and I was able to function during the day. This doctor's nurse implied that I just will have to get used to being sedated during the day. Is this true? What other options might work?
 

Becky

Medical Reply

Opioids are typically the most potent drugs for patients with RLS in your situation. However, some patients just can’t tolerate them. You could try some others like OxyContin (slow release so less peak drug levels and may be better tolerated and still quite effective) or methadone. You might want to have your doctor prescribe Zofran in case you get nausea from the opioid trials. I have sometimes had to try 5 or more opioids before finding one that my patient can tolerate.

Although most sleep specialists like to get sleep studies, it is most probable that in your case it will not add anything to your treatment.

Sent: Tuesday, July 08, 2014 7:47 PM
Subject: Problems with methadone?

I have recently weaned off of Mirapex and the Neupro patch, due to augmentation. I was started on Horizant, which failed to do anything for my RLS, plus it caused some minor swelling. My doctor then switched me to 5 mg. of Methadone. The methadone immediately stopped my RLS, but I became extremely swollen - generalized edema. My doctor was puzzled but discovered it is a rare side effect, or hypersensitivity. I am still on the methadone, but struggling with the edema.

My feet are always swollen and my hands and fingers have a tingly feeling most of the time. I can feel it in my joints and I become very stiff when sitting at my desk at work all day. I do try to get up and walk around a bit, but my job is at a desk and most of my day needs to be spent there. When traveling last weekend my feet swelled tremendously and it went up my legs which became very tight and stiff and a deep red color. It was quite painful.

I called my doctor this week and he basically said I have 2 choices; Methadone and live with the edema (I am also now on a water pill), or live with RLS. I am so frustrated as this has been a treacherous process and now I feel like there is not an answer for me. Couldn't other medicines help? Do you have any suggestions or advice?

RLS sufferer

Medical Reply

It is quite likely that this sensitivity reaction (which is fairly uncommon but I have seen it before since I use a lot of methadone) may not be shared with other opioids. Therefore, you may want to speak to your doctor about trying oxycodone (about 5 to maybe 10 mg) or other similar potent opioids. That should work quite well if you don’t have any side effects.

A Reply from RLS sufferer

Sent: Tuesday, July 15, 2014 7:51 PM
Subject: Re: RLS question

I have been on the OxyContin now since last Thursday night. I noticed the swelling from the Methadone receding through the weekend and by Monday morning it was significantly reduced. However, I am having some nausea, and also some RLS. Twice at bedtime, and yesterday I was very drowsy in the morning, had RLS in the late afternoon so paced at my office, and afterward was drowsy again. I had RLS again this evening while resting on the couch. These are symptoms I used to get with augmentation from Requip and Mirapex.

I am concerned that the OxyContin may not be alleviating my RLS. I have not talked to my doctor yet as I want to give it more time. I also do not know what other options I may have. I do not want to go back to the methadone due to the swelling, but I only experienced a few little leg pulls/minor RLS with it. Any comments or ideas to relieve my mind?

RLS sufferer

Medical Reply

You don’t say what dose of OxyContin you are currently taking. However, methadone is typically much more potent for treating RLS than oxycodone. Furthermore, since OxyContin releases its oxycodone more slowly which lasts longer but has lower blood levels. You might need higher doses of the OxyContin or some shorter acting oxycodone 5 mg tablets to “touch up” the slower acting OxyContin for the RLS that typically worsens later in the day. Speak to your doctor about these options to see which one is best for you.

Sent: Saturday, July 12, 2014 8:42 AM
Subject: Off Mirapex /Depression ? 

I have been a Mirapex user for 14 years and went off it cold turkey for a 28 day period under the advisement of an RLS specialist doctor.  I am now on methadone and doing very well considering how I was prior.  While on Mirapex I experienced the compulsive behaviors and although wanted off the drug, I was unable to find anything that I could replace it with (thus being on it for 14 years!) until consulting with the RLS specialist in April 2014 and using a very very low dosage of methadone. 

I have been off Mirapex for approximately six weeks and am extremely fatigued and have a great deal of nausea and belching.  My internist ran blood tests and cannot find anything physically wrong with me. My RLS specialist said the only antidepressant I can take is Wellbutrin.  I am on the generic for Wellbutrin and the nausea increased so much that I could not take it more than two days.

My question is, do long term users of Mirapex have a difficult time with their brain kicking back into function to produce the chemicals necessary to feel a sense of well being?  I sleep and am in bed at least 20 out of 24 hours a day.  I am eating little due to upset stomach.  The fatigue and sleepiness was the first symptom and after about two weeks, I started with the nausea.  I am told nausea can be a hormonal imbalance or a ‘psychogical’ issue.  I’m beginning to think my mind is all out of sync!

Roger S.

Medical Reply

You may be suffering from DAWS (Dopamine Agonist Withdrawal Syndrome) which does not occur very often (I have seen several cases from the many hundreds or thousands of my RLS patients) but tends to occur in patients who experienced impulse control behaviors with dopamine agonists. There is really no treatment for this disorder but it often resolves in a few months to a year. 

Here are some links to help you understand this problem: 

http://www.ncbi.nlm.nih.gov/pubmed/23686524 

http://jnnp.bmj.com/content/84/2/130.full 

http://www.medscape.com/viewarticle/778433

Sent: Monday, July 14, 2014 5:20 AM
Subject: Toxins

Just want to add that my RLS is also related to toxins, not just food pesticides but also air pollution etc. if I walk into a room that has just been varnished or painted with an oil based paint one of my legs will start becoming uncomfortable and I will have to leave the room.

Connie

Medical Reply

Thanks for your letter. Many RLS patients have different triggers.

Sent: Monday, July 14, 2014 8:10 AM
Subject: Trazodone

Is Trazodone only RLS/PLMD friendly because it’s a sleep aid and helps you fall asleep or does it just generally not worsen the symptoms? The only reason I ask is that I have RLS/PLMD 24/7 and I just want to make sure that it shouldn’t make me worse?

Rob

Medical Reply

It is not clear why trazodone does not worsen RLS or PLMS but it is one of the few antidepressants (Wellbutrin is the other major one) that does not worsen RLS. It’s effect as a sleep aid is actually due to its side effect of causing sedation that many doctors use to help sleep since it is not addictive.

Sent: Tuesday, July 15, 2014 6:48 PM
Subject: RLS and ingredients in pills

I am wondering if anyone has ever made a connection with RLS symptoms and cellulose, an ingredient in almost every OTC pill? At least the cellulose is the most obvious ingredient prevalent in the pills with which I have noted a start-up of my symptoms.

The reason I am wondering about this notion is because of stumbling on it by accident. I also have IBS. Because none of the prescription meds I have tried helped with my IBS symptoms, much less address a cause, I was ready to take drastic steps and started the GAPS diet. It is a fanatically strict elimination diet. It removes anything that could in anyway case an inflammatory response in the gut. All this to say, I have had to closely monitor any kind of intake.

I won’t go into all the details of how deleted then added foods back in, but this is when I discovered that dairy is a major cause and one component in my RLS symptoms. Months later, I was also amazed to discover that even the slightest ingestion of nightshade vegetables (peppers, tomatoes, potatoes, etc.) cause a significant increase in my RLS twitches. I was astounded to read about their neurotoxin effect on insects and that some people have a sensitivity to this neurotoxin. I have tested these “hypotheses” by added these foods back, after a period of elimination, to only have my twitches return, then stop when I stopped the intake of them.

What caused me to wonder about the cellulose (or whatever the suspect component might be) was when the symptoms would return for a night or two occasionally after eliminating dairy and nightshades. I also began to notice that rather than the symptoms returning earlier in the evening as they usually had when they occurred regularly, they would often wait until I had just gone to sleep, then begin. Because of already linking my ingestion of dairy and nightshades, I began to look into what else could I possibly be ingesting. I finally made a connection with OTC medications I was taking at bedtime. It was a new vitamin for the IBS that I stopped taking thinking it was one of the minerals that caused my flare. Then, attempting to take magnesium supplements, at bedtime, for the RLS, the twitches would appear again.

I take several supplements for the IBS and taking liquid supplements do not result in the same RLS effect as taking a pill form of the same supplement. The cellulose is always in the pill, as a binder, I think. What little information I have read about the cellulose is that it is apparently harmless, so I know this is very much a shot in the dark, but, once again, I am desperate to try to find a solution. This time, for my RLS.

It is important to note that I am 55. I have never taken any medication for my RLS. My symptoms started becoming too much to ignore about 3 years ago. After beginning the special diet, I have started to imagine not having to use it. This is a testament to how successful dietary changes have benefited my symptoms. I have only been off any pills that use cellulose for few days with good results.

I could be very premature In making this new hypothesis. It is incredible to imagine that this could be a viable component in my RLS symptoms. I have waited several weeks to try it while searching the internet for any connection I could make between the cellulose and twitch increase. I have found none. Then again, not many people have been on a strict enough diet, for such an extended period of time, to arrive a such conclusions. My situation is somewhat unique. I am writing to see if someone with more medical experience and research capabilities could provide insight that I have not been able to find on my own. Too, I would suspect that this binder would be in my prescription meds, for high blood pressure, and deleting it from my diet may be more difficult than I think. I do take those, that I must take, in the morning hoping that it would diminish by bedtime.

Janet M.

Medical Reply

You have an interesting hypothesis. However, since cellulose is a common binder of many drugs, one would suspect that more people would be suffering its ill effects if that was a common problem. However, it is certainly possible that some people like you may have reactions to filler ingredients in pills. The only way to be sure is to see if your improvement lasts for several months. If so, you could always retry the pills as see if the RLS symptoms return.

Again, problems with medications (like the many RLS patients who get worse with antihistamines, antidepressants, anti-nausea/dizziness medications, etc.) become fairly obvious in a short period of time since we get many reports of these interactions.

Sent: Wednesday, July 16, 2014 3:40 PM
Subject: RLS

Firstly I must say that you web site is most informative and provides plenty of reading. I am a 70 year old male retired living in Australia and have been a sufferer of RLS for over two years, my latest symptoms along with the ants crawling inside my legs is cold legs and feet and some times just in the toes. My doctor of several years sent me to see a specialist for a second opinion ( heart specialist ) and I was given a good report, no clogging of veins etc and was told that the cold feet was probably associated to the RLS in as much as it has caused nerve damage hence the cold feet.

I have been taking Effexor for several years for depression and often wonder if this drug is the cause of my RLS, which leads me to two questions,

1) What antidepressants are know not to cause RLS that have the same curing effects as Effexor.

2) Of the medications you talk of on your treatment page which of these drugs could be best used when RLS sufferer is being prescribed Effexor.

Some 12 months ago my doctor sent me to sleep specialist who confirmed that I had RLS and proscribed Sifrol (pramipexole) but this drug had a bad reaction with the Effexor so my doctor advised me to stop taking.

Like all other sufferers I am reaching out in the hope that I can get some relief.

Merv B.
Queensland Australia

Medical Reply

Effexor typically worsens (or triggers) RLS in patients who have the disease (or are susceptible to the disease). It is possible that stopping the medication might significantly improve your RLS symptoms and occasionally might even resolve it. The only effective antidepressant that is RLS friendly is Wellbutrin and if that worked for you (and you can never tell without trying it), you might improve your RLS problems while still controlling your depression. Otherwise, you probably should stay on the Effexor and just work around it.

Typically, Sifrol (pramipexole called Mirapex here is the USA) does not have any issues when taken with Effexor. Since you had trouble with pramipexole, other drugs that might help you include Lyrica and gabapentin. .

A Reply from Merv

Sent: Wednesday, July 16, 2014 10:13 PM
Subject: Re: RLS

I thank you very much for your prompt reply to my request for information and will discuss with my doctor on my next visit, just one more thing and I have heard that coming off Effexor can be a problem, can you advise or recommend any method that may help in moving away from this drug.

Merv B.

Medical Reply

It depends upon the dose. Small doses may be stopped abruptly but larger doses should be tapered slowly. Check with your doctor.

Sent: Thursday, July 17, 2014 4:59 AM
Subject: RLS Question

I have been suffering from RLS-like symptoms for about a week, but I am not sure if what I have is actually RLS. The symptoms last all day long—from morning until night. I do not have any pain, but simply the constant urge to move one (not both!) of my legs. Rather than tingling or creeping, I can describe the sensation as purely being one of discomfort. The strange thing is that it never happens in both legs—only one leg! Most of the time it is the left leg, but sometimes it switches over to the right leg. Since I have the urge to move it, the sensation goes away when I walk around or move my leg, but it comes back right away. Does this sound like RLS, or could it be psycho-somatic? (I have had this issue before during times of stress, but it usually goes away. This time, I’ve had it 24/7 for a week.)

I have tried magnesium and potassium but to no avail. I also had full blood-work done recently, and I do not have any vitamin or mineral deficiencies.

23-year old male RLS Sufferer

Medical Reply

It does sound like RLS although RLS symptoms are usually worse in the evening/bedtime. Stress can worsen/trigger RLS symptoms.

Magnesium and potassium have no influence on RLS.

Sent: Wednesday, July 23, 2014 3:12 PM
Subject: Requip questions

I am currently on 8 mg of Requip for my restless legs. It currently is combined with Lyrica and they had to raise my Lyrica at night because it wasn't covering my symptoms all day. My doctor says 8 mg is maximum for restless leg. Is there other medication you would suggest that would go together with Lyrica or would Lyrica work alone? Does Lyrica work better with another medication or is it okay by itself considering I am already at 500 mg?

Tammy M.

Medical Reply

You are asking the wrong questions.

The problem that you are most likely experiencing is augmentation especially since you are on such a high dose of Requip. It is likely that a much lower dose worked originally and you slowly had to keep increasing the Requip which helped temporarily but sooner or later you needed more.

Augmentation is a worsening of your RLS due to taking a dopamine drug (like Mirapex or Requip). Although the drug helps initially and with each increase in the dose, each further increase in the dosage adds fuel to the fire causing the augmentation process to accelerate. Therefore, RLS experts strongly advise that patients with augmentation should not keep increasing their dopamine agonist dose as that will ultimately result in heightened problems with RLS. Due to these concerns, I currently recommend that the dose of Requip should not exceed 1 mg per day and Mirapex not exceed .25 mg per day.

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms.

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids. Your Lyrica may work much better (at lower doses) once the augmentation process has resolved. However, in the setting of augmentation, Lyrica would not be sufficient on its own as it would be if you had started it before taking the Requip.

Sent: Tuesday, July 29, 2014 4:31 PM
Subject: Augmentation after 8 days back on Mirapex?

I weaned off Mirapex 4 months ago due to it causing augmentation although I had several good years on it before augmentation. In desperation I have gone back on it at lowest dose . However after only 8 days back on it my RLS is starting earlier in day, spreading to my arms and not working well at night, I had expected the same brilliant results as when I started it several years ago.

Is it possible for augmentation to occur in only 8 days on Mirapex after a few months break? I am going to try to get Neupro patch prescribed next.

Kim W
UK

Medical Reply

Unfortunately, once augmentation has occurred in the past, restarting a dopamine agonist (Mirapex) can cause the augmentation to recur within days (as in your case). Neupro might be a better choice.

A Reply from Kim

Sent: Tuesday, September 02, 2014 10:43 AM
Subject: Re: Augmentation after 8 days back on Mirapex?

Thank you very much for the information which I have passed on to my GP which he accepted graciously! He has prescribed me Neupro patch and I am getting good results. I know there is the danger of augmentation as I had on Mirapex.

Have been advised on forum not to wear patch for full 24 hours to avoid augmentation. Is this true?

Kim W.

Medical Reply

There is no data on whether wearing the patch for less than 24 hours will increase the risk of augmentation but it is though that pulsing the dopamine agonists may be responsible for the augmentation effect (these are still only theories, however). The studies have shown very little augmentation with Neupro when used in doses up to 3 mg for 5 years (and of course, in the studies the patch was kept on for 24 hours).

A Reply from Kim

Sent: Wednesday, September 24, 2014 8:23 AM
Subject: Re: Augmentation after 8 days back on Mirapex?

Could you please tell me if there is an advantage to wearing the Neupro patch for only part of the day rather than for 24 hours as prescribed in terms of avoiding augmentation?

Kim W.

Medical Reply

As far as augmentation, it is though that continuous therapy is less likely to cause augmentation compared to pulse therapy with shorter acting dopamine agonists. Therefore, leaving the patch on for 24 hours and maintaining steady levels may be better.

A Reply from Kim

Sent: Wednesday, September 24, 2014 9:16 PM
Subject: RE: Augmentation after 8 days back on Mirapex?

I understand augmentation but would you be so kind as to define tolerance to dopamine agonist. Not sure of the difference.

Kim W.

Medical Reply

Tolerance may be the first stage of augmentation when a higher dose is needed to get the same effect that a previous dose took care of in the past.

Augmentation has that element of tolerance but in addition, the RLS symptoms occur earlier in the day, may spread to other body parts and PLM may increase. In addition, symptoms get more intense. It is like the disease has progressed and worsen like it might over a few decades.

Sent: Wednesday, July 30, 2014 12:44 PM
Subject: RE: Please help RLS-10 years augmentation going nuts

I am extremely fearful of taking opiates. Absolutely mortified. I am 52 years old. What happened when I develop tolerance to pain med’s and then possibly get really sick and need them for some other serious painful illness and pain med’s won’t work because of being on an opiates for long term use. What is the longest time people stay on low dose before building up tolerance and having to take the “drug holidays”

I’ve read so much about on RLS.org or other resources? I don’t have pain from RLS just discomfort, breakthrough RLS during day as I am at a computer for long periods doing accounting work. Rarely I will have aching in my upper thighs but it’s not pain. And my RLS is not so vicious that keeps me up all night. It’s peak times are 4pm – 10 pm but I take Calm Legs (Valerian based) plus Restful Legs when needed and actually think the St. John’s Wort might have been helpful for RLS. I do not understand why neurologists are pushing pain med’s for a non-painful condition even though I cannot tolerate Mirapex and now Horizant due to depression, extremely dry eyes, teeth clenching and teeth pain, TMJ pain and some mild right hand tremors. This seems like a last ditch resort to me.

Pam M.

Medical Reply

I do understand your issues with taking opioids. I do not want to trivialize taking these potent drugs and anyone taking them should do so under strict supervision and with great caution.

However, under proper supervision, opioids can be very safe and incredibly effective for treating RLS. Even though most patients do not really experience pain with their RLS, opioids are typically the most effective treatment for relieving RLS symptoms. Of course, they are not a first line drugs for RLS but when dopamine agonists (Mirapex, Requip, and Neupro) and alpha-2-delta drugs (Horizant, Lyrica, gabapentin) have failed; opioids are next on the list of recommended RLS medications.

I have been prescribing opioids for RLS for over 20 years. Once you exclude the 10-15% of patients who stop using opioids after the first few months (usually due to side effects such as constipation, nausea, drowsiness), most all the patients do not experience any other issues. If doses are kept within reasonable ranges and monitored closely, the risk of dependence, tolerance or addiction should be almost zero. Furthermore, I have not seen much if any issues with tolerance for using the opioids for post-operative pain (or other types of significant pain) in my patients

Most of my patients just state that the low dose of opioids just relieve their RLS symptoms and they are otherwise unaware of being on medication. If that is not the case when you take the medication, then it is not for you.

Sent: Wednesday, July 30, 2014 12:59 AM
Subject: RLS issues.

Here is a strange note, when on occasion I have an orgasm, the pain completely leaves my legs. Not for very long but it is amazing that I have no pain.

The hydrocodone has helped a great deal but I think it could be better controlled at 10 mg. or maybe increase it by adding one more 7.5mg.-?- I say that because the 7.5 doesn’t last throughout the day because of not sleeping all night. So, to fill in that time frame, I will take a 5 mg. that I have left from my first prescription.

Tracy D.

Medical Reply

We have heard quite often that orgasm relieves RLS symptoms and one South American doctor even published a medical article on this topic.

Hydrocodone only lasts about 4-6 hours which is why I more often use methadone (lasts about 8-10 hours) or longer-acting drugs like OxyContin.

Sent: Wednesday, July 02, 2014 9:19 AM
Subject: Sinemet

About a year a go my migraine specialist put me on a daily dose of 2 x 250 mg CR Sinemet. My legs used to ache when resting and I wasn't getting good quality sleep. It stopped my legs aching and my sleep improved. (My legs would ache even in the day time).

A couple of months a go I slowly came off Sinemet as I read on your website that it shouldn't be taken daily. As soon as I lowered the dose I started having severe 24/7 RLS and PLMD all over my body.
One month a go I tried going onto the Neupro patch but I have not noticed any real improvement maybe its got slightly worse since being on the patch. I am still on the 3 mg patch. I have it 24/7 with some days better than others. When its bad I notice my hands are slightly shaky.

Can you think of any explanation to what's going on? Any advice would be really appreciated.

Adam in the UK

Medical Reply

If you are on the Neupro patch at 3 mg and still taking the pregabalin 300 mg then you are pretty good standard therapy. If that is not holding your RLS then it is possible that something else is driving your RLS symptoms. Other exacerbating medications (although the ones that you have communicated to me seem fine), low ferritin levels (in which case iron therapy may be beneficial) or even stress/anxiety.

Here is the USA, many experts would then add an opioid (methadone, oxycodone, etc.) but that might be quite difficult to obtain in the UK. The opioids typically resolve most of the problem in the majority of RLS sufferers.

Sent: Tuesday, August 12, 2014 6:56 PM
Subject: Horizant

I have read this website for years and consider it the most comprehensive source on RLS on the internet. It has aided in my choice of drugs for many years. I have RLS 24/7. I have probably tried every RLS related drug that is on the market. I had a consultation with the physician in charge of the Movement Disorders Clinic in the Medical School in my state. He prescribed Horizant. Within the first week of taking Horizant, I experienced a panic attack which was unlike anything I have ever experienced.

Eventually, I went to the Emergency Room because the symptoms became so severe. Also at the same time, I experienced a swift, almost overnight, slide into a major depressive disorder. I did experience two personal tragedies prior to this but was not in a depressive state. It's been over two years since that initial setback and the depression, even with drugs, has made my life very, very difficult. Have you heard or read of this kind of reaction to Horizant? It seems to have changed my life forever.

R. S.

Medical Reply

Horizant is known (as is gabapentin which is what Horizant turns into once absorbed into the bloodstream) to produce depression/suicidal thoughts. However, these usually occur in patients with a history of depression. Furthermore, the depression goes away quickly once the drug is stopped. Therefore, more likely, the two personal tragedies may have been the true cause of your depression and the Horizant merely triggered the onset of this depression a little sooner than it might have occurred on its own.

It is less likely that the Horizant was responsible for your increase in anxiety (although anything is possible) as it typically improves anxiety (often as well as SSRI antidepressants.

Have you tried opioids (like methadone or oxycodone) yet for your RLS?

Sent: Wednesday, August 13, 2014 1:18 AM
Subject: Restless legs, Ropinirole and Sinemet

I am a fit, healthy 65 year old woman and I've had restless legs for over 20 years. My father and half of my siblings and some cousins also suffer from it to various degrees. In 2006 my doctor prescribed Sinemet which quickly caused augmentation and diarrhea so I discontinued it on a regular basis. Because it worked fast, I used a half a tablet if my legs started aching in a movie or concert or during a long car ride.

For the next eight years I just resigned myself to getting up every two hours, doing stretching and yoga, listening to the radio and sometimes crying out of frustration. I was very sleep deprived and had big circles and bags under my eyes for almost the entire time.

In March 2014 my new doctor (I moved cities) prescribed ropinirole which has been almost like a miracle. I am now taking about .62 mg (two and a half .25 mg tablets) a few hours before bed. It usually doesn't last all night but I'm wary of augmentation and don't want to increase the dosage sleep and can get back to sleep for a few more hours. I try not to let the RLS kick in before bedtime by not sitting for long periods and keeping busy.

Would it be okay to still take the occasional small dose of Sinemet during movies or car drives as well as ropinirole at night? With my RLS under control I've been able to address my insomnia and found a good book "The Sleep Book" by Guy Meadows which seems to be a slightly different approach to dealing with insomnia.

Clare S.
West Coast
New Zealand

Medical Reply

Keeping the dose of ropinirole to a maximum should help to significantly reduce the chances of developing augmentation although augmentation may even occur at the lowest dose (.25 mg). Adding Sinemet as needed (but intermittently and not daily) may not increase the risk of augmentation that much but there is not a lot of clinical experience available to answer your question (even from experts like me who have very large RLS practices as we generally like to avoid prescribing Sinemet to patients on dopamine agonists like ropinirole).

Another choice for movies or riding in a car would be tramadol. It also works quickly and lasts about 4-6 hours.

A Reply from Clare

 It's taken a while since I asked about Sinemet and you recommended I try Tramadol. I gave my GP a copy of your email and then made an appointment with him. He prescribed Tramadol and said it would be okay to take in conjunction with the ropinirole, not just in the specific limiting situations I had in mind. I tried it once in the middle of the night and it seemed to relieve the pain in my legs but didn't last long and I woke up two hours later with pain. Okay, I might be a slow learner, an optimist or just doing research, but over the two months since I've had the prescription I've tried it nine times at night, always with the same effect or none at all. Sometimes I think it even kept me awake but that might have been my imagination. 

Yesterday I went to see a Met Opera live in HD movie which I really enjoy. About 15 minutes into the opera I took a Tramadol and waited for it to work. It didn't, not at all and for the rest of the three hours my right leg (it switches sides) was absolutely killing me. I was able to walk around during the intermission and luckily the movie theatre was one of the tiny ones and I was able to sit across the aisle from everyone else so I didn't disturb anyone but my husband and he's used to it. 

Currently I'm taking two .25 mg tablets of ropinirole, having backed off a little due to augmentation concerns. It's no longer the "miracle" I thought it was at first but still better than nothing. I realize RLS/WED is a moving target and one size does not fit all. I had a prescription for Clonazepam earlier this year and that too had no effect at all. 

You said Sinemet was not a good match with ropinirole. Would it be okay if only during the movies or car rides I took it and did not take the ropinirole that night? Do you have any other suggestions? I value your advice. My GP is a very diligent young doctor and seems to be open to suggestions.

Clare

Medical Reply

Another option would be to try 2 of the tramadol instead of 1 and see if that works. If that is not successful, another interim treatment for occasional situations like movies may be an opioid like hydrocodone (Vicodin, Norco, etc.). 

However, the wearing off effect of ropinirole may already indicate that augmentation is occurring in which case your RLS will continue to get worse if you increase the dose to treat those worsening symptoms. It is not clear whether adding as needed Sinemet for movies (instead of my suggestions above) will make this worse but your treatment with ropinirole should likely be addressed in the very near future.

Sent: Tuesday, August 26, 2014 5:18 PM
Subject: Anxiety and PLMD

I have had GAD (Generalized Anxiety Disorder) my whole life (30 years). I now realize I may have had PLMD for a long time, as well. I never knew I had it until I became sexually active around 10 years ago and had bed partners tell me that I kicked them in my sleep. However, since I never felt any adverse effects, I never thought to ask a doctor about it.

In the last 5 years, however, I have had many different sleep problems. Trouble falling asleep (less often), trouble staying asleep (more often), and, now, I seem to be able to stay asleep but I wake up very tired every day. I don't ever remember feeling refreshed for at least 5 years. Granted, I can still be very active without caffeine or stimulants (I can cycle 20 miles a day without too being fatigued to get on the bike). Cycling brings me great joy and I am grateful I have the energy to do it. So, part of me thinks I could choose to just accept the fatigue without using prescriptions.

However, following a sleep study where I showed 50 disruptive leg movements per hour, my primary care doctor has prescribed me Requip at a starting dose of 2mg. I have taken it for 3 days now and, unfortunately, I have awakened more often each night (at least 5 times) than I ever do even when I have trouble staying asleep. I've never awakened so many times! Someone suggested doubling the dose but that made the awakenings even worse.

I plan to ask my primary if I can try Mirapex instead and, if it both reduces my fatigue, insomnia and anxiety, I won't need to add another pill. However, I would like your opinion on what, if any drug, I could add to Mirapex for my anxiety should Mirapex not help those anxious symptoms. I am concerned because it sounds like Wellbutrin (which is not considered a first-line treatment for anxiety, given its "stimulating" nature) is the only antidepressant known to NOT worsen PLMD for anyone.

Yet, having tried benzodiazepines, I know that I develop tolerance very quickly to them and they affect my cognitive abilities very acutely (I became very disorganized and unfocused at work when I took them on a daily basis and nearly lost my job). I have considered asking trying a long-acting benzo like Tranxene (Klonopin makes me uncharacteristically depressed) but I have been told all benzos carry similar risks.

I am willing to white knuckle it through my PLMD and anxiety but if I knew there were safe treatments that addressed both without exacerbating either, I would feel better about electing to take drugs.

Nick

Medical Reply

Treating PLMD is very controversial. It is very far from clear that the PLM leg kicks (even with arousals) have any real impact upon the sleep quality or next day refreshed feeling (except for perhaps in your bed partner). Furthermore, you did not have any issues for 10 years while you had manifestations of PLMD so it is even more unclear why the PLM would be a factor currently. Most RLS/Sleep specialists do not treat PLM by themselves but do treat them in RLS patients since most of the RLS drugs reduce the PLM (or the arousals caused by the PLM).

Your dose of Requip at 2 mg is already quite high (I would have started at .25 mg) so increasing it further may be more likely to cause adverse effects rather than improvement (especially since you already have noted worsening of your current problems with awakenings which increased further with doubling the dose). Changing to Mirapex (which is more potent than Requip and somewhat longer acting) would be unlikely to work any better than Requip.

The only other antidepressant that does not worsen RLS/PLMD is trazodone. Although this drug might also help you sleep better, it is not a great antidepressant (must be used in higher doses to be truly effective which cause more side effects) and in men may cause priapism (which is not common but can cause permanent loss of function). You are correct about Wellbutrin as it often causes some insomnia and an increase in anxiety.

A Reply from Nick

Sent: Tuesday, August 26, 2014 9:44 PM
Subject: Re: Anxiety and PLMD

Is it true that Ambien CR may help maintain sleep (a recurring problem) and (potentially) lead to better perception of rest (feeling "refreshed") -- and will not worsen PLMs?

Nick

Medical Reply

Ambien is a commonly used drug for patients with insomnia for any reason. Although it has not been well studied for PLMD, other benzodiazepines (Ambien is a selective benzodiazepine) have been demonstrated to decrease the arousals from PLM/leg kicks but not reduce the number of leg kicks.

Since Ambien has a relatively short half-life of 2.5 hours (meaning that it has less of a propensity to cause next day sedation) it should be reasonable choice to see if reducing your PLM arousals results in improved daytime function and decreased fatigue.

Sent: Saturday, August 30, 2014 7:52 PM
Subject: RLS...what to do next?

I'm a 65 year old male with some family history of RLS. I'd had periodic minor episodes of RLS for probably 20 years, but not daily, and without medications. In fact, I could go months with no issues. About a year ago I suddenly began having serious daily episodes that kept me awake for several days. My doctor put me on a daily dosage of 1mg Requip. It certainly helped in the beginning. However, I now experience RLS every day, and more frequently than just bedtime. I can wake up with it in the morning, or get it when driving a car, or when sitting during the afternoon/evening. I still often have trouble getting to sleep.

I see my doctor in a few days and am guessing he will recommend an increase in dosage. However, I am very reluctant to do so. In fact, I often wonder if I'd be better off to get off all meds since RLS has become more serious since going on meds. I understand this can be very difficult. But from what I've gleaned in reading this blog, I'm already on the maximum recommended dosage (1mg), and the rebound may become even more serious with an increased dosage.

I'm hoping to arm myself with some possible treatment options to discuss with my doctor, and would very much appreciate any thoughts on the following two questions:
Given my history, is it possible that going off meds could have a good outcome (in time)?

If not likely, what changes in meds should be considered?

Fred in Collinsville, IL

Medical Reply

Sent: Sunday, August 31, 2014 6:45 AM
Subject: Re: RLS...what to do next?

Thank you for the prompt and thorough response!! Two more questions: I have read that marijuana is effective for some people. Might it be a safer alternative to the other opiates? With the extended release Requip and others, wouldn't augmentation still be likely in time?  

Fred R.

Marijuana (inhaled) often works very effectively to control RLS symptoms. It may be best for bedtime RLS as it takes effect very quickly but does not last very long. It is very difficult to say how safe it is compared to other treatments as the long term effects have not been well studied. However, with the legalization of marijuana in many states, I suspect we will get an answer to that question eventually.

Augmentation may occur with the long acting dopamine agonist drugs but it occurs much less commonly. However, we do need to gather more data on the use of these drugs to find out what happens. We do have some good 5 year data with Neupro that shows a very small percentage (5%) with the 3 mg dose only (it was 8% with the non-RLS approved dose of 4 mg) after 5 years.

A Reply from Fred

Sent: Sunday, August 31, 2014 9:37 AM
Subject: Re: RLS...what to do next?

It's nice to have alternatives, but the decision is not an easy one. Getting off Requip altogether is very tempting, but I'm somewhat concerned about the transition period, and the need to use potentially addictive opiates.

Given that I've been on 1mg Requip for just 17 months, might the transition period be shorter than for some? Or, is there not any way of predicting? If I first tried the long-acting dopamine agonist drugs, would there be any potential advantage to trying something other than Requip since it's not working so well now?

Fred R.

Medical Reply

It is difficult to say whether the long acting Requip would work better than either Mirapex ER or Neupro even though the short acting Requip is not working for you. I usually start with Neupro since it is FDA approved for RLS and thus more insurances cover it.

You may have it a little easier transitioning from Requip since you have not been on it very long but since you have significant augmentation already, it still might be quite difficult. Using opioids should be done very carefully, but in the hands of an expert, tolerance/dependence/addiction should rarely occur (unless there is a pre-existing history of opioid abuse). However, you do need this transition to be done by a doctor with some experience with this process. There may be some experts in the St. Louis area but I do not know of any.

When doctors (like your internist) call me, I do offer free advice but few call since most doctors know little about the augmentation process and feel uncomfortable navigating it even with some expert help.

A Reply from Fred

Sent: Sunday, August 31, 2014 4:30 PM
Subject: Re: RLS...what to do next?

Is a transition process necessary when switching from Requip to one of the long acting meds? Once on one of these meds, can I easily switch among these products if one isn't working so well?

Frederick R.

Medical Reply

There is no real formal method to switch over but most of us slowly decrease the short acting while increasing the long acting. However, in your case, the lowest dose of Requip XL is 2 mg which is already much higher than what you are on and for Mirapex ER .375 mg (which is like 1-1.5 mg of Requip so may be a better choice of the two). Therefore, there is no transition except for an immediate swap.

For Neupro, the 1 mg patch is similar to about to about Requip 1 mg (but spread over 24 hours) so 1-2 mg may be comparable. However, you should start with 1 mg for a week and if you need some Requip (like ½ tab) to supplement then it likely means that you need to go to the higher dose after 1 week on the lower dose.

A Reply from Fred

Sent: Monday, September 01, 2014 4:47 PM
Subject: Re: RLS...what to do next?

I've read on page 6 of the "RLS Medical Bulletin":
"The metabolism of ropinirole and pramipexole is different, so either may work when the other has not."

My brother, who is 5 years older than me and had RLS much longer, was initially put on Requip with limited success and switched to Mirapex with much better success (0.5 mg 3 times/day). He's been on the med for at least 3 years and has occasional issues, but much better.

I'm thinking this might be the better first step for me, instead of trying to go off all meds. What you agree? Or do you think it better to try going off first?

If I do go on Mirapex, should I start at the minimum dosage and increase as necessary? Or should I start at an equivalent dosage to my 1 mg Requip prescription?

Fred

Medical Reply

I do understand that you are looking for simple to execute alternatives to your problem but augmentation is much more complicated.

Although ropinirole and pramipexole have different metabolism (one is metabolized in the liver while the other is excreted through the kidneys) that is more of a concern when there are liver or kidney problems. Sometimes when patients initially do not respond to one dopamine drug, they may respond to another but that may have more to do with their binding to the different dopamine sub-receptors.

If your brother is on Mirapex .5 mg three times daily, he clearly has been experiencing problems with augmentation also as that is a very high dose of Mirapex. Although he has done well for the past 3 years, it is quite likely that he will require more Mirapex sooner or later with decreasing effectiveness.

Sent: Saturday, August 30, 2014 8:36 PM
Subject: Essential Oils for RLS Relief

I am 65 years old and have suffered from intense RLS for the past 25 years. I had it off and on as a child, especially on long trips in the car, but don't recall any issues with it as a young adult.

I have tried many of the anti-seizure and Parkinson's medications with little or no relief. I was prescribed one Vicodin at bedtime, 20 years ago by the first doctor that actually put a name to my condition. (I never knew it was called Restless Leg Syndrome). That has progressed over the years to 7 tramadol a day, plus one Pramipexole at bedtime. The progression was a result of needing more and more of the pain killer over the years to achieve the same level of relief.

Recently I have been experiencing the symptoms again, which, in the past would lead to additional medication. I decided to try using Essential Oils as a complementary therapy, rather than add another "pill". They work! I have done a lot of research and there are some important things to know if you are going to try this kind of therapy. First, and foremost - you must use pure Essential Oils - no fillers, no additives, since these are usually toxins that can cause their own problems. I use doTERRA brand Essential Oils and would strongly advise RLS sufferers to check them out. I am still trying to find the best combination, but the oils that are working for me are "Aroma Touch" "Deep Blue" and "Serenity" ( all are blends of different oils). I also use Lavendar, Marjoram, Roman Chamomille and Vertiver. I put a couple drops of each in a bit of Fractionated Coconut Oil and rub it into my leg. I typically layer 2 or 3 oils at once.

Relief is usually immediate and will last anywhere from an hour to a couple hours before I need to reapply. Sometimes I can even get through a whole night with one application. They are pretty amazing, completely non-toxic, natural, with no side effects. If anyone wants any more information, I would be glad to help.

Pete H.
Idyllwild, California

Medical Reply

We will post your experience with the essential oils although we have not heard much (if any) other RLS patients benefiting from this therapy.

Sent: Monday, September 01, 2014 2:46 PM (see previous series of letters, Oct 18, 2013, at 9:32 PM)
Subject: Re: Restless leg as a result of withdrawal from fentanyl and opiates

It has been quite some time since I wrote to you. In the intervening time, much of what you warned me about actually happened to me. The Ropinirole did cure my immediate problem but I soon developed severe augmentation.

I exercise fairly hard every day (about one hour of jogging or riding a spin bike). Because of my age (72), I usually try to take a one-half hour nap during the day. However, the augmentation would happen whenever I tried to sleep and that left me with the choice of less sleep or more ropinirole.

I never realized just how bad the augmentation could be. I was really in a situation that looked desperate. I did come up with a treatment that worked for me but only because my chronic pain became worse and they had to greatly increase the amount of Morphine I was taking. As you know, opioids are the treatment of last resort and certainly not something that I would wish on anyone.

Stephen H.

Medical Reply

The real issue here is that as long as you continue to take the ropinirole, you will continue to drive the augmentation and need more opioids (such as morphine) to treat your symptoms.

You really need to find a doctor who can treat your problem so that it will not continue to escalate to a point where you need very high doses of opioids and ropinirole.

Sent: Wednesday, September 03, 2014 9:08 PM
Subject: Medications

I have been on Requip for 7 years. It has caused the nasty augmentation. I switched to Mirapex and after only 3 weeks my arms are jerking again. I would really like to get off the dopamine medicines. Should I go with Gabapentin or Horizant? And how much? Should I do both?

Cindy G.

Medical Reply

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine agonists. After a few weeks or months off the dopamine agonist drug, the RLS will typically improve and may even return to pre-dopamine agonist levels. However, stopping the dopamine agonist will provoke a marked worsening of RLS symptoms for a few weeks to months and for most patients, only a potent opioid (methadone, oxycodone) will be able to control those symptoms (Horizant, Lyrica or gabapentin will only help marginally in this situation).

It typically takes an RLS specialist or a doctor who is very familiar with RLS to manage the augmentation process. Most doctors do not feel comfortable prescribing potent opioids but unfortunately, without them the withdrawal from dopamine agonists can result in weeks or months of misery (with little or no sleep). After several weeks or months when the RLS has calmed down, alpha-2-delta drugs (Horizant, Lyrica, gabapentin) may be added to help reduce or eliminate the opioids.

An alternative treatment (which is still fairly new) is to change to a long-acting dopamine agonist. The Neupro patch is the only FDA approved long-acting dopamine agonist for treating RLS (up to 3 mg/day) and may work well for patients who are having augmentation on relatively lower doses of Requip (up to about 3 mg/ day) or Mirapex (up to about .5 mg/day). For higher doses of those drugs, a switch to long-acting Mirapex ER or Requip XL may be helpful (but these drugs are not approved for treating RLS so may not be covered by insurance plans). When transitioning from short-acting dopamine drugs to long-acting ones, the dose of the long-acting drug is started at the lowest dose and may be increased on a weekly basis as needed. The short-acting drug can be used to supplement the long-acting ones until the optimum dose of the long-acting dopamine drug is found.

Sent: Saturday, September 06, 2014 11:33 AM
Subject: RLS question

I have had bad RLS for a long time. I am currently taking Ropinirole (Requip) 1 mg a day around bedtime. It really does not help. I sleep for a couple hours and then wake up with the same feelings in my legs and I have to get up an walk around. I tried taking .5mg around 11PM and then another .5mg when I wake up at around 3AM. Not much help that way either.

I recently tried Melatonin to help me sleep but it seems to be worse. I cut out caffeine and starting taking Magnesium and still no help.

Jacqueline B.

Medical Reply

There are several approaches that would help you but some of them might result in more problems in the future.

Increasing the Requip at bedtime (to 1.5 mg or 2 mg) would very likely help your problem but this might lead to augmentation (a worsening of RLS from taking a dopamine agonist drug like Requip). Changing to Mirapex (acts a little longer) at an equivalent dose (.25 to .375 mg) might also help but the augmentation issue might still occur.

Changing to a long acting dopamine agonist like Neupro (which is approved for treating RLS) could be very helpful as the Neupro patch is kept on for 24 hours. Although augmentation is still a concern, this problem tends to be much less common with the long acting dopamine drugs and especially when Neupro is used at the lower and approved doses.

Another option would be to add Horizant which should help your RLS and also tends to promote better sleep.

There are other options (such as going completely off the dopamine drugs) but that may require a doctor with much more RLS expertise.

Sent: Sunday, September 07, 2014 10:42 PM
Subject: RLS and depression?

My story begins with my diagnosis of anxiety and depression. I may have had a predisposition for depression and anxiety because I have family members who suffer. I had a grandmother who was housebound and another relative who has suffered from panic disorder her entire adult life and she is now in her 70's. Following a traumatic life event, I began having panic attacks. This started a one year long journey to find the right medication at the correct dosage to control my anxiety. Valium was amazing. I felt and functioned totally normal when taking valium but knew I couldn't be on this drug long term.

After many antidepressants at many dosages, I found Zoloft. This is the med that saved my life. Not only was I able to leave my house on my own, but I was even able to have a job. I was able to do all of this on the lowest dosage. The one thing I learned about myself along the one year journey back to sanity was my extreme sensitivity to medication. It was shortly after taking the Zoloft regularly that I started noticing discomfort in my legs. I found myself not being able to sit down and watch TV at night without having to get up and stretch out my legs.

I didn't know it at the time, but I was developing RLS. It was mild back then. I remember feeling the urge to move my legs when trying to fall asleep at night, but at the time I could stretch or change my sleeping position and easily alleviate my symptoms. Over the years my RLS has become more severe. I really believe it was the SSRI that gave me my RLS. It's too bad that I can no longer take the Zoloft because it was the one thing that helped my anxiety the most, but it exacerbates my RLS.

These days my RLS is relentless. For a while I wasn't getting much sleep at all and the sleep I was getting was probably not a good one because of my constant moving. I have tried magnesium, essential oils, ibuprofen, walking, stretching, quinine etc. Sometimes, I can find some relief but not enough to get a good nights sleep, Recently, my doctor prescribed me Requip. I'm taking one .50 an hour or so before bed. It seems to be working enough to sleep but not all night. As soon as the drug wears off, I am awake suffering again. This is usually around 4am. Due to my sensitivity, I am unable to tolerate a much higher dosage. When I take more I suffer from fatigue and just an overall unwell medicine head feeling. I just want to be able to lay comfortably in bed at night and get a good nights sleep.

What else can I do for my RLS? Also, do you have another recommendation for a medication I can use in place of the SSRI for depression and anxiety? The other questions I have are does Requip make RLS worse in the long term? In other words, if I use this drug for an extended period of time will my RLS be worse when I stop? Does RLS ever resolve itself? What is being done to help sufferers in the future?

Theresa R.

Medical Reply

Most likely, the Zoloft merely triggered your RLS and was not really the cause. We feel that RLS is mostly genetic and in many patients it may wait until age 40-60 before appearing, often as in your case when a medication sets it off.

Wellbutrin is really the major alternative drug that is RLS friendly. It often works well for depression but may not help or even worsen anxiety (the only way to figure this out is to try it). Some patients may also do well with nortriptyline (an older antidepressant).

However, if the alternatives to Zoloft do not help, then most RLS experts would just treat around the Zoloft (especially if it is essential for severe depression/anxiety as in your case). It does require an RLS doctor who knows more of the options and how to use them.

Other options to treat your RLS include the Neupro patch, Horizant and Lyrica (both of which may help anxiety but could worsen depression so would have to be monitored closely) and opioids (which can be very effective and safe if prescribed correctly). Iron supplementation for patients with serum ferritin levels less than 50-75 may also prove very beneficial.

Requip, even at the low dose of .5 mg may cause augmentation which is a worsening of RLS due to taking the dopamine agonist. This can occur within a few months or years or anytime during the course of treatment. However, stopping the dopamine drug (Requip in your case) usually reverses the augmentation process but can result in a few weeks of marked increase in RLS symptoms (it may be impossible to sleep during that period).

There is a lot of research being done but even difficult cases such as yours can be adequately managed with the treatments available today by an RLS expert doctor (which can be hard to find).

Sent: Thursday, September 11, 2014 2:44 PM
Subject: Methadone to Neupro patch

My questions are not born out of desperation, happily, but my PCP isn't super well versed in RLS/WED and I wanted to get advice from one who knows. Haven't found anything exactly on point in the forum.

I am looking at transitioning from methadone to the Neupro patch. (To his credit, my PCP is quite willing to work with me on meds.) I switched fairly recently to methadone from Mirapex because of augmentation and am sleeping pretty well with it. However, it seems to be causing me to overheat very easily; also, I would like to get 24/7 coverage, especially because I have a couple of international flights coming up in late October.

So question #1 is, What's the best approach to transitioning from the methadone to the Neupro?

And question #2 is, If the Neupro isn't effective for me, is it possible/advisable to space out lower doses of methadone over 24 hours, in order to cover me for those long flights? I saw a mention in the forum of someone taking three doses a day. I currently take my single 7.5- to 10-mg dose before bedtime.

Patty H.

Medical Reply

We don't often transition off an opioid to Neupro but rather the other way around. However, the transition would work as follows:

Start with the Neupro 1 mg patch for the first week and see how much you can decrease the methadone (by 1/2 tabs). If you still need methadone after 1 week, increase to Neupro 2 mg and try to further decrease the methadone. You can go to Neupro 3 mg in the third week if you need to further reduce the methadone. If you can't get completely off methadone with Neupro 3 mg, then you should not increase the Neupro dose any further.

At that point, you may want to stay on the combination of the 2 drugs as you should be taking a lower dose of methadone and hopefully, that might eliminate your side effect of overheating.

If you still wish to eliminate the remaining methadone dose (assuming that you were not fully successful with the above plan), then adding another class of drug (like Horizant) might help you to accomplish that goal.

If Neupro does not work for you, then taking extra smaller doses of methadone is a common treatment for airplane flights. If you are concerned about the overheating issues, you might want to ask your doctor to prescribe oxycodone instead. The immediate release oxycodone lasts about 4-6 hours so more dosing may be necessary or you might consider using OxyContin which lasts for about 12 hours.

A Reply from Patty

Sent: Friday, September 12, 2014 3:59 PM
Subject: Re: Methadone to Neupro patch

It turns out my Neupro prescription has to have prior authorization, and from past experience I doubt that will come through, so I think I'm going to be sticking with the opioids. Can you advise me on methadone dosages and timing for the flights?

I tried oxycodone briefly before I went to the methadone. I didn't give it a very long trial, partly because it wasn't lasting more than 4 hours and causing daytime sleepiness. I think I'll see about starting the OxyContin once I get back from the trip. I'd really like to try it sooner, but I'm having a hard time imagining how I'd manage those dosages in flight. If you have suggestions about that and think OxyContin could work well on the trip, I'll ask my doctor for a prescription sooner.

Patty

Medical Reply

It takes the methadone (or regular oxycodone) about 30-60 minutes to kick in, so I typically recommend my patients to take the pill about 30-60 minutes before symptoms typically occur. Since it may take 30 minutes to 2 hours after sitting in the airplane for symptoms to start depending upon the time of day you are traveling, then just take the pills at the appropriate time before to prevent them from occurring (remember that it is much easier to prevent symptoms compared to taking them away once they are active).

The dose needed may also vary on the time of day and most patients need less medication earlier in the day compared to later (so you will have to experiment or if you are very worried about getting it right, just use your higher dose of 7.5 - 10 mg).

Since OxyContin is also a brand name, you may have trouble getting that authorized by your insurance. Even if you can get it easily and sooner, it is always smart to go with the drug that you are familiar with when facing a new challenge like an airplane trip.

Sent: Wednesday, September 17, 2014 6:18 AM
Subject: A further request for help with RLS.

Many thanks for your previous help. (Last contact 25/10/2013). A brief summary present position. I am 70 years old, don’t smoke or drink alcohol. I live in Perth Western Australia.

I still can’t find any medical practitioner that really understands RLS and how to treat it. I have been to several Neurologists and more than 6 GP’S looking for help. Most doctors still suggest the Dopamine Agonist medications. My doctors don’t read your notes. I have tried pramipexole 75mg SR, ropinirole 2mg and some other dopamine agonist’s .These all augment within several months. Also tried Tramadol 100 SR without success.

Currently I have gone back on the Rotigotine 2 mg patch and Targin 10/5 (combination of OxyContin and Naloxone) once a day (in the morning). I tried gabapentin 300mg, take 2 a day for a few weeks without any relief. Still used Targin in morning. Also take Panadol osteo 665mg 2 / 3 times a day, Nexium 40 mg occasionally & meloxicam occasionally for arthritic pain. The Rotigotine (Neupro) patch has worked for the last 3 weeks but I have started to get some RLS thru the night. Rotigotine worked really good for the first 2 weeks. To complicate my health I also have severe sleep apnea and use a CPAP machine every night. Currently my oxygen de saturation is around 92% this has been like this for some months.

The major problem I have is not getting enough sleep. My CPAP is disruptive and my legs get very restless. Sometimes I only get 3 to 4 hours a night.

I am hoping you may have found a better treatment program since I last contacted you. Also what is your suggestion about the Targin 10/5 medication should I look at increasing the dose to 20/10 or what else should I ask my present doctor to look into.

Graeme H.

Medical Reply

Since you seem to have problems (like many RLS sufferers) with the dopamine drugs, it may actually be better for you to be off them. You can go up to 3 mg of Neupro but if that only helps for a short while then things get worse, then you may actually do better off that drug.

The Targin is a very reasonable choice for treating RLS and if taken appropriately (and monitored carefully since this is a potent opioid), it may control all of your RLS. However, Targin works for only 12 hours so you might need to take it in the morning and at night. Typically, the larger dose is needed in the evening when the RLS is worse. It sounds like you morning dose is fine and an evening dose should take care of the rest of your RLS symptoms.

You should also have your serum ferritin checked and if it is below 50-75, iron supplementation may be helpful (although this often needs intravenous iron transfusion therapy to be truly effective).

Even though you have failed gabapentin, it might be worth a trial of Lyrica to see if this will help you keep the dose of Targin as low as possible.

Sent: Monday, October 06, 2014 5:50 AM
Subject: RE: A further request for help with RLS.

I have stopped the rotigotine patch. My GP has now started me on LYRICA but a very low dose of 75 mg in the evening. I have had no benefit from LYRICA as yet and I am told by my pharmacy, the minimum dose or 150 mg is usually needed to get some result. The level of TARGIN is 10/5 mg and only taken in the evening. What levels of these medication is usually necessary to get some relief from RLS. Currently most nights RLS keeps me awake and this is cause for concern.

A recent check of ferritin level is 66 ug/L is this satisfactory. Iron umol/L is 20 and iron saturation is 31%.

Graeme H.

Medical Reply

The dose of Lyrica that supplies benefit for RLS varies considerably. Some patients do well with as little as 50 mg and some need 300 mg. The 75 mg dose is a good start and we generally increase the dose by 75 mg every week or so until it provides adequate relief of RLS symptoms.

Targin lasts only for 12 hours so it would not be expected to treat your RLS symptoms during the night. If you have daytime symptoms, the morning dose is reasonable. Otherwise (if you don’t have much daytime RLS), then only an evening dose would be necessary. For patients with RLS symptoms around the clock, twice daily doses are often necessary but the morning dose can be adjusted separately from the evening dose (most patients need a higher dose in the evening).

Your iron levels seem adequate.

Sent: Monday, May 09, 2011 8:59 AM
Subject: Requip and chest burning @3 a.m.

I take Requip for restless legs at 8 p.m. At 3 p.m., I get a burning sensation under the rib cage. I take 1/4-1/2 of a 2 mg. tablet. I have been taking Requip for 2 years. During the day I have no problems at all. I feel perfectly normal. I also get cold right after taking Requip and then hot. I also get a slight tingling right after taking it. I have no other problems.

Norma

Medical Reply

Your reaction to Requip is somewhat unusual and therefore hard to explain. However, it does not sound serious so it may not be worrisome. If the reaction worsens, check with your doctor.

Sent: Monday, September 29, 2014 11:46 PM
Subject: RLS Medication

I was diagnosed about a year ago with RLS. I am a 23 year old female but I feel these are symptoms I have had for most of my life that were described as “growing-pains”. I tried all the dopamine agonist drugs (Requip, Mirapex) with less than optimal results and I actually hated the Mirapex. So more recently I was put on tramadol and Ambien (I have been on Ambien for 6 years and would like at some point to get off of it.) I recently had a seizure and was therefore told no more tramadol but the tramadol worked amazingly. I am now on 0.5mg of Klonopin which sometimes works, but sometimes doesn’t. My sleep doctor wants to put me on medications that I am concerned about (carbamazapine or Lyrica) and I was wondering what you’re opinion was. My recent seizure testing came back with no results for cause and therefore no diagnosis of epilepsy. I have read some studies about oxycodone-naloxone and they seem to have very positive results but I fear that no doctor is going to take me down that route. Do you have any recommendations?

Joanna M.

Medical Reply

The next step of treatment in your case is typically Horizant (the only FDA approved non-dopamine agonist drug). It is in the same class of drugs as Lyrica (which works very well for RLS) but Lyrica is not approved so is usually not covered for RLS and is thus more expensive. Carbamazepine may have some modest benefits for RLS but is rarely used to treat it.

You do not say why Mirapex and Requip did not work well for you but the Neupro patch (which is also a dopamine drug) often helps when the older short-acting dopamine drugs have failed.

The recent study on Targin (oxycodone/naloxone) were quite favorable for patients who have failed first line therapy but pure oxycodone or methadone are used much more frequently as Targin was only approved a few months ago in the USA. However, we typically do not start opioids until the above therapy has proved unsuccessful. Also, you are correct that most sleep specialists and neurologists who treat RLS are not that familiar or comfortable prescribing opioids for RLS but there are national RLS experts who prescribe them frequently when needed.

Klonopin does not really treat RLS but rather just helps RLS patients fall asleep. It has a very long half-life (over 40 hours) which can cause next day sedation and has a high potential for causing tolerance/dependence.

A Reply from Joanna

Sent: Tuesday, September 30, 2014 12:16 AM
Subject: Re: RLS Medication

Is Horizant and gabapentin the same thing, or similar? I tried gabapentin for a while as well at 300 mg a night and I felt it left me "foggy" all day and as an aspiring medical student I did not feel it was worth this side effect.

The Requip worked at a low dose in combination with Norco that I had left over from surgery but once I ran out of that we decided to try Mirapex. Mirapex seemed to make everything worse, the RLS was worse and the insomnia was worse. I didn't sleep for about 3 days.

So yeah, I guess I'm just lost on what the next step to take is.

Joanna M.

Medical Reply

Horizant is simply a much better delivery system for gabapentin so it is quite likely that this drug will cause drowsiness in the morning.

In your case, the next step may be low dose methadone or oxycodone which can be reasonably safe and effective when prescribed by a doctor who is experienced and knowledgeable about using them for RLS.

Sent: Friday, October 03, 2014 9:08 PM
Subject: Desipramine - RLS friendly or not

My GI physician wants me to take amitriptyline for Burning Mouth Syndrome and nausea and acid. My psychiatrist wants me to take imipramine for depression, pain and sleep. Recent Psychiatry/RLS article (July 2014) suggests tricyclic medications may be RLS friendly.

The RLS article from Nightwalkers newsletter 2009 (http://www.rls.org/Document.Doc?id=1870) states that desipramine is an alternative RLS friendly antidepressant. There seems to be contrary opinions. I don't know what to do as below:

“Many antidepressants such as selective serotonin-reuptake inhibitors (SSRIs) like Cymbalta, Effexor, Paxil, Prozac, Serzone, and Zoloft, and tricyclic medications (Elavil, Tofranil, and others) have been linked to a worsening of RLS. Alternatives include Wellbutrin, Norpramin (desipramine), and Desyrel (trazodone). Ask a qualified physician for advice.”

Pam M.

Medical Reply

This is a little complicated. Desipramine and imipramine are both tricyclic antidepressants but desipramine is a secondary amine while imipramine is a tertiary amine. The secondary or tertiary designations refer to how many organic molecule substitutions occur for the hydrogen atoms that are attached to a central nitrogen atom in the amine molecule. The 2 substitutions that occur in secondary amines give them different properties (and thus different clinical effects) than tertiary amines that have 3 organic substitutions.

The bottom line of this complex explanation is that although they appear to be in similar classes of antidepressants, they are actually in different subclasses which make them quite different, especially with respect to RLS. It is thought that the secondary amine tricyclics like desipramine have less serotonergic effects than the other tricyclics (and RLS is thought to worsen with drugs that increase serotonin levels). Limited clinical experience with desipramine has found that it quite often does not seem to worsen RLS due to the above reasons but imipramine will most likely exacerbate RLS.

Wellbutrin and trazodone are completely different classes of antidepressants (each is in a class by themselves) and have very different properties and effects than the other antidepressants (and no serotonergic properties) so are safe for RLS.

A Reply from Pam

Sent: Saturday, October 11, 2014 12:06 PM
Subject: Carbidopa/Levodopa and augmentation?

My RLS specialist decided to start me back on Sinemet last night after being off it for 2 years. Currently only thing I've been taking is .5 mg - .7 5mg of clonazepam mainly at bedtime plus OTC Calmlegs (valerian) Evening Primrose Oil and occasionally OTC Restful Legs. Took it at 6:40p.m. last night as my worse time seems to be from 7 - 10p.m. (resting period while on sofa).

Today, I've noticed pain in my upper thighs and mild RLS at 12:30 p.m. This is earlier and new. Got up and moved around just a little and it's somewhat better. Also woke up at 4a.m. (after 4 hrs sleep) on clonazepam with some mile/moderate thigh pain and added additional .125 clonazepam at 5:15a.m. and it subsided after about but never went back to sleep just tossed next 2.5 hours. Is this augmentation this quickly?

Pam

Medical Reply

The vast majority of patients (like over 90% which is why we do not recommend taking Sinemet on a daily basis) get augmentation with Sinemet within a few weeks or months after taking it for the first time (you were extremely lucky to go 8 years before augmentation occurred). However, when Sinemet is reintroduced once augmentation has occurred in the past, the augmentation can return within a few days or less (which is why we recommend not to do this much more emphatically than even using Sinemet in the first place) and you do not say how many days you took it this time before problems occurred.

As you may also know, we typically do not recommend the use of Klonopin to treat RLS. The drug has a very long half-life of 40 hours and tolerance/dependence/addiction occurs readily.

Sent: Tuesday, October 07, 2014 12:47 PM
Subject: RLS/PLMD Medication Issues

I have been suffering from RLS and recently PLMD since my early teens. It has been successively controlled with Requip or its generic Ropinirole. Due to what I now understand is augmentation, my 6 mg. extended release Ropinirole has been enhanced with 1800 mg taken in two doses in the evening of Gabapentin and Tramadol 75 mg all taken in the evening within 2 hours of each other. My primary care physician, previously attempted to treat my worsening RLS with Baclofen 20 mg, then Neupro 2 mg patch, next Carbidopa/Levodopa 25 mg., added Klonopin, and Promethazine. All without the Ropinirole. The result was dramatic increase in RLS with PLMD to boot. My current medication: Ropinirole 6mg., Tramadol 75mg., and Gabapentin 1800 mg. has caused extreme dizziness, sleep disruption allowing for no more than 2 hours, usually one hour at a time and no more than 5 hours combined in a night.

I recently suffered a fall during the night while walking around. I believe I feel asleep standing up. The fall resulted in a broken nose and facial trauma since I literally fell on my face. The neurologist in my area is at a loss and I am scheduled to see another next week. Since I live in a rural area in Missouri the chances of seeing an RLS specialist are zero. I now suffer from Fibromyalgia and have begun Savella 50mg. once a day with some success. I have had to leave my job as a special education classroom aide on medical leave because I cannot walk the school hallways without holding on to a wall from dizziness and lack of sleep. Temazepam 30 mg. has helped but I am afraid to take anything more than I already am for fear of more dizziness and falling. Throughout the years I have been on Lunesta then Ambien for sleep but had negative side effects from them such as doing things in my sleep I was unaware of.

If this isn't enough now at times, especially stressful ones, because of the fibromyalgia, I am in extreme pain as well. I went from being a functioning active adult to a cane dependant shut in. I currently am afraid to drive a car for fear of drifting off to sleep.

Cynthia H.

Medical Reply

Your RLS care has clearly been and still is quite suboptimal.

Some of the drugs do not help RLS (Baclofen, Klonopin) while others tend worsen it immediately (like promethazine). Savella is a good fibromyalgia drug but can also worsen RLS.

What most RLS experts would recommend at this point is to wean off the ropinirole while replacing it with a potent opioid like methadone or oxycodone. Most doctors are not aware of this treatment and also reluctant to prescribe opioids (which can be done fairly safely by a knowledgeable doctor).

Sent: Wednesday, October 08, 2014 10:40 AM
Subject: Medication

I have been taking carbidopa/levodopa (Sinemet). I emailed my neurologist asking if Kaiser had Mirapex. I explained my concerns about augmentation and well he didn't take that well and has fired me! I am seeing another neurologist the 21st...in the meantime I switched my self back to the ropinirole which is working! My problem is that after a week maybe two, the meds stop working. Do you think it is safe for me to switch back and forth between both meds every other week. I think this will outsmart the RLS. The Kaiser pharmacist I spoke with thought it wouldn't be a problem.

Dana G.

Medical Reply

We rarely switch patients back and forth between Sinemet (carbidopa/levodopa) and a dopamine agonist (ropinirole) as the chances of augmentation are very high. However, it is possible that this regimen could work for you although I suspect that you will have trouble after a few months or less.

The best current solution for you problem would be to change to a long acting dopamine agonist (Neupro or the long acting forms of Requip/Mirapex although Kaiser hates to pay for these brand name drugs) or to get off all the dopamine drugs by using an opioid (I have seen a few Kaiser doctors use this technique).

You are quite wise to change quickly from the neurologist who fired you as you clearly were beyond his comfort and knowledge zone.

A Reply from Dana

Sent: Wednesday, October 08, 2014 6:06 PM
Subject: RE: Medication

Don't think they have Mirapex and I know they don't have the patch. Can ask about the opioids though. Does the Requip cause augmentation as well as the levodopa?

Dana G.

Medical Reply

All the short acting dopamine drugs (Mirapex, Requip, Sinemet) cause augmentation and at a high rate. Even Neupro and the long acting Requip and Mirapex may cause augmentation but at a much, much lower rate and not as severe.

Kaiser does carry Neupro and the long acting Requip and Mirapex. They just don’t like to prescribe them due to cost of brand name drugs.

Sent: Sunday, October 12, 2014 4:11 PM
Subject: Exercise worsening RLS?

I have been on .25 of Mirapex in the evening for restless leg. It works on those days when I am not exercising but exercise always makes it worse and the Mirapex doesn’t work. The more exercise I do, the more restless leg in the evening. If I take a long hike or do much uphill climbing, it is agony most of the night. This was worse before I began taking meds for RLS but continues even on the Mirapex dose. Do I have to stop taking long hikes?

Kathy B.

Medical Reply

RLS actually gets better with regular mild to moderate exercise. However, vigorous exercise (and of course, that definition varies considerably from person to person) very often worsens RLS symptoms such as you have been experiencing.

It might be helpful to add Horizant (but you would likely have to take that on a regular basis) but another choice would be to take an opioid (Vicodin, oxycodone, etc.) just before exercising vigorously. There is no guarantee that either treatment would help but they may be worth trying or otherwise you may not be able to do heavy duty exercise.

A Reply from Kathy

Sent: Monday, October 13, 2014 3:15 PM
Subject: Re: exercise

Actually ANY exercise above a casual stroll makes my legs worse

Medical Reply

Sorry to hear that. It is very unusual for such minimal exercise to trigger RLS symptoms. You are the first case (of a very large group of my patients) to have that issue.

Sent: Monday, October 13, 2014 9:08 PM
Subject: RLS and high glucose

I've had RLS most of my life. I even recall feeling the irresistible urge to move my legs as far back as 2nd grade. It sort of disappeared between 20 and 45 years but reappeared and now that I'm 50 it is terrible. In addition to the restlessness at bedtime, I now experience a burning/tingling/painful sensation in my legs.

Recently, my blood glucose has become elevated as is my hemoglobin A1c at 6.2 which has my family doctor concerned. I've been taking gabapentin and tramadol (1200mg and 50mg respectively) at night and together they provide terrific relief. I have a couple of questions.

1. Should I be concerned with the long term use of these medications? My neurologist thinks that there are no long term concerns but a second opinion would be greatly appreciated.
2. Is there a connection with diabetes and RLS? Both of these run in my family on my mother's side.

Nick A.

Medical Reply

There is typically no concern about the long term use of either gabapentin or tramadol by themselves or when taken together.

There is a weak link between diabetes and RLS in that there is a higher incidence of RLS in diabetic patients (similar to what we see with many other diseases like many neuropathies (MS for example), thyroid disease and numerous other medical conditions. How or why these disorders have more RLS patients is not understood. However, it may be that most of these disorders have increased neuropathy (nerve damage that can cause pain or RLS like sensations of numbness/tingling) that might be confused with RLS.

Furthermore, there is no immediate clinical concern about your diabetes (likely only glucose intolerance at this point unless your fasting blood sugar is over 126) in that the goal for diabetics is to get their hemoglobin A1C under 7 and you are already there. In addition, real diabetes only causes problems (kidney, nerve and other organ damage) after years of uncontrolled and elevated sugars and hemoglobin A1C levels. Thus, the only concern that your family doctor should have is that your sugar problem will worsen as you get older (especially if you gain weight) and then you might need treatment with medication.

Sent: Wednesday, October 08, 2014 9:24 PM
Subject: PLMD & clonazepam

I've been on 500 mg of clonazepam for PLMD for about a week. I have had several sound night's sleeps but have also experienced some arousals with mild waking PLMS. Is this is a common experience with this drug? If so, is there a more consistently effective alternative?

Dick J.

Medical Reply

The treatment of PLMD is somewhat controversial in that many experts recommend NOT treating it. Furthermore, clonazepam does not reduce the number of PLM but just decreases the arousals from the leg kicks. There are much better medications that do not have a very long half-life (like the over 40 hours for clonazepam) and will accomplish that task (like Ambien, Lunesta, etc.).

Waking arousals with PLM are more common in RLS patients than those who have PLM without RLS. We then just treat the RLS which often resolves the PLM problem also.

Sent: Thursday, October 16, 2014 8:45 AM
Subject: Mirapex or Requip?

I've written to you before. I have had RLS for about 15 years that has progressively gotten worse to the point of no sleep and an inability to function at work. I am currently taking ropinirole 1mg 2-3 hours before bedtime. I started out at ,25 and have only been taking it about one month. The 1 mg dose does greatly reduce the RLS but even at this low dose I'm having side effects. I am extremely restless (my legs seem calm) and don't sleep well. I'm having trouble falling and staying asleep. I have a hung-over feeling in the morning.

Another problem is that it has caused me to start clenching my teeth. Very strange I know, but true. Do you think that a switch to Mirapex may help or can I expect the same side effects? Also, my doctor has referred me for a sleep study. Are these studies helpful in treating RLS?

I was diagnosed with panic disorder and depression about 15 years ago and due to my sensitivity to meds it took almost 1 year to get it right. I finally found that Zoloft was the only med I could tolerate that helped. I guess you can say I am currently in this process now with treating my RLS. I don't want to waste so much time experimenting with meds. 

Theresa

Medical Reply

Although sleepiness is the more common side effect from Requip (ropinirole), insomnia is not uncommon. Your hangover may be the delayed sleepiness problem that also occurs with Requip. We cannot be sure that Mirapex will not do the same, but the odds are quite high that it will.

You might do better with Horizant which actually helps insomnia in many RLS patient (although it may cause next morning sedation in some patients).

There is very little reason to get a sleep study in RLS patients as the RLS is an awake issue that just prevents sleep. Leg kicks while asleep (called PLM) are associated with RLS but we most often do not treat the PLM. I rarely get a sleep study in an RLS patients unless I need to rule out sleep apnea or narcolepsy (and I am also a sleep specialist).

Zoloft tends to worsen RLS symptoms but if this drug is essential, you should just work around it.

Sent: Thursday, October 16, 2014 9:58 PM
Subject: RLS from bulging disc

I had an accident about 9 months which caused a bulging disc, I now have RLS. It generally only happens when I lay down am about to go to sleep. My doctor put me on Cocodmramal and tramadol ( because of the severe pain I am having day to day with my lower back) and that usually helps me to fall asleep and not really notice it too much. Two days ago I noticed I was bleeding from my buttocks ( sorry not sure how to put that nicely) and decided to stop the medication as I believe the bleeding could be caused from that.

It is now 6 in the morning and I have not been to sleep yet and can't manage to get to sleep as the feeling is just constant. Has anyone been in my situation where RLS has been caused from a bulging disc? And if so do you know if it eventually stops? I can't help but let this get to me, I am 26 years old and sports And the gym were a huge part of my life. I feel like everything has been taken away from me and feeling totally fed up and exhausted. I don't like to take drugs to help me feel better and cope with the pain but it seems like I have no option.

Can anyone please suggest something that can help me out.

Alex K.

Medical Reply

RLS is often triggered by trauma or pain (especially from the spine). Once triggered, the RLS may continue even when the back pain is gone (although it is usually worse if the pain persists). You should have the back pain addressed (pain specialist, orthopedist, etc.) but the RLS can be also treated. Typically, tramadol and the codeine in Cocodmramal should take care of both the pain and RLS.

You can treat the RLS additional with Requip or Mirapex. Check with your doctor. Gabapentin may also be helpful (by itself or added to the above medication).

Sent: Friday, October 17, 2014 1:12 AM
Subject: Request for Help

I am sorry to have to come to you once again for advice on my RLS treatment but it appears that my Ropinirole in 1 mg. dosage per night is now less and less able to control my RLS. I have been on this dosage, very successfully, for about three years (before that being on carbidopa/levodopa until it became less effective). Now it appears that my minor spondylosis may be aggravated by my age (now 74 1/2) and Ropinirole just is not controlling the RLS in my legs. (I feel there is a connection between the two.)

Just prior to this lessened ineffectiveness of Ropinirole, I have been able to get to sleep with two over-the-counter Benadryl tablets taken with the Ropinirole and have not had a problem getting to sleep nor was I bothered by RLS for the balance of the night even when I had to get up to urinate and then return to bed. Rarely did the RLS manifest itself even the next morning under this regimen. With the lessened effectiveness of the Ropinirole just recently, I have, as you suggested below, increased the dosage to 1.25-.30 (cutting the tablet) but the increased dosage doesn’t seem to be effective.

I’ve recently had a series of physical therapy treatments for my lower back and now daily do some stretching exercises as prescribed. Unfortunately, the most focused of these exercises does not help me overcome the RLS though it has helped with some sciatica I had developed.

In 2011, you advised me as follows:

Increasing the Requip is one possible option. It would be most effective to take the extra amount (like .25 mg) just before going to bed so that it will last throughout the night (Requip has a half-life of about 6-8 hours). Alternatively, you could change to Mirapex which has a long half-life (8-12 hours, but one always hates to rock the boat too much making too many changes in medications). We generally like to keep the Requip dose at a maximum of 1 mg these days to avoid long term problems like augmentation. Another option is the Horizant which I discussed before that may take care of the RLS and help you sleep.

Based on my above discussion, would you make this same suggestion or is there something new on the market that might give me even more options?

For the record, I am not drinking alcohol nor any other stimulants before going to bed. I do have trouble getting to sleep regularly and, though active during the day, I am not unusually tired before going to bed at about the same time every night.

R. Stephen D.
Rural Western Oregon

Medical Reply

It is difficult to give you advice without seeing you as a patient. However, I can give you some information to discuss with your doctor.

Your minor spondylosis would only be responsible for worsening your RLS if the pain from the spondylosis was major. Otherwise, it is more likely that despite your low dose of ropinirole, you are developing augmentation (a worsening of RLS from taking ropinirole). If that is the case, changing your medication would be a more appropriate treatment rather than increasing the dose or changing to Mirapex.

One possibility is to change to the Neupro patch which is a long acting form of a dopamine agonist (like Requip and Mirapex). That would be the easier approach for a GP.

The alternative approach would be to get off ropinirole completely and replace it with a potent opioid like methadone or oxycodone. However, most doctors (even many neurologists and sleep specialists) are knowledgeable enough and comfortable with this management plan.

It is difficult to give you advice without seeing you as a patient. However, I can give you some information to discuss with your doctor.

Your minor spondylosis would only be responsible for worsening your RLS if the pain from the spondylosis was major. Otherwise, it is more likely that despite your low dose of ropinirole, you are developing augmentation (a worsening of RLS from taking ropinirole). If that is the case, changing your medication would be a more appropriate treatment rather than increasing the dose or changing to Mirapex.

One possibility is to change to the Neupro patch which is a long acting form of a dopamine agonist (like Requip and Mirapex). That would be the easier approach for a GP.

The alternative approach would be to get off ropinirole completely and replace it with a potent opioid like methadone or oxycodone. However, most doctors (even many neurologists and sleep specialists) are knowledgeable enough and comfortable with this management plan.

Sent: Friday, October 17, 2014 11:06 PM
Subject: Xanax helping my RLS

While I was glad many years ago to hear I wasn't crazy or developing some disease. I'm so sorry to see so many suffering from this horrible affliction. While some might say it could be worse they have not walked a mile in our slippers while trying to sleep. I heard a man say he wished his legs were not there at all some times and it made me cry I also have felt that. My "RLS" lead to a severe anxiety disorder which I spent years dealing with and finally was put on the drug Effexor only after losing my girlfriend of several years.

Long story short I found relief in Xanax. I was prescribed .5 and only took half when I needed which would make a 30 day supply last 90 or so days. While I don't recommend any narcotics to anyone ,if you do not have a dependency problem, you should be ok. Best of luck and I will keep you all in my prayers.

RLS sufferer

Medical Reply

Most RLS patients only use Xanax to help them get to sleep. Typically, Xanax and other benzodiazepine drugs (it is not a narcotic as that term now is more restricted to drugs in the opioid class) do not actually improve RLS symptoms in the majority of patients.

Effexor often makes RLS worse as do most antidepressant drugs.

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Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 108.
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