Patient letters on RLS symptoms and remedies- Page 112

 

Kicking RLS/PLMD Patient



Sent: Friday, August 28, 2015 12:49 AM
Subject: RLS and insomnia

I've just discovered your website - really interesting. I live in France, so the names of the drugs may be different.

I have had RLS since I was a child - really only a problem in tiring, cramped conditions like long bus journeys. However, over the last few years (I am now 70) it has got much worse - every evening and then insomnia at night. I have been suffering from insomnia for 15 years and been treated, mostly unsuccessfully with sleeping pills which stopped working after the first couple of nights. My doctor finally sent me to a neurologist who made the connection between the RLS and the insomnia.

I have tried Pramipexole (nausea but worked), the Neupro patch (allergic) and ropinirole (augmentation). I stopped all 3, thinking that, now that I have retired, it might be bearable - less tired and not having to get up in the morning. I now rarely have RLS in the evenings but terrible insomnia. I am trying homeopathy, without much success and various changes to diet.

Anyway, the neurologist wants me to try pramipexole again and, if this doesn't work, Lyrica. At the moment I am taking an over - the-counter codeine and paracetamol mixture, which works a bit when the RLS wakes me up, but I am still exhausted.

Why do you think I should do?- continue to try to find something for the insomnia, go back onto Pramipexole (dreading the nausea), try Lyrica (dreading the weight gain and addiction), continue in my search for a non - drug alternative, etc?

Claire RD

Medical Reply

If you have had nausea before with pramipexole there is no reason to believe that it would not happen again. Furthermore, if you developed augmentation with Requip, it is also quite likely that it will reoccur with pramipexole.

Lyrica is a good choice as is gabapentin (although Lyrica works more predictably). Lyrica may cause weight gain (more than gabapentin) but does not cause addiction.

You have already discovered that opioids (low dose codeine which is likely about 8 mg) can be very helpful for treating RLS symptoms. More potent opioids would likely eliminate the problem but you will likely find it hard to find doctors who will prescribe them for RLS.

There are very few non-drug alternatives that really work. You should have your serum ferritin checked as if it is low (we have higher standards for RLS of 50-75), then iron therapy can be very beneficial.


Sent: Sunday, August 30, 2015 3:53 PM
Subject: Nocturia (frequent urination at nighttime) with Mirapex or sleep apnea/ 49 yr old female

I have nocturia which it seems to have started after switching from Requip to Mirapex after augmenting a few yrs ago. I go to bathroom as much as 5 times a night. I do have sleep apnea and use a CPAP now for 1 year of therapy. My complete lab work and ferritin and all looks good...so am I correct in thinking the Mirapex is the reason for the nocturia?

Does RLS cause nocturia? Would you please advise? I see my doctor in a couple of days and need to try something to figure this out.

Laura

Medical Reply

Increased frequency of urination might occur rarely with Mirapex so I can't say that Mirapex did not cause this problem. However, it is more likely that the increased nightly frequency of urination is due to something else.

RLS does not cause nocturia unless you are kept up and thus go more often to the bathroom.


Sent: Tuesday, September 01, 2015 11:00 PM
Subject: Migraines & RLS?

I first noticed symptoms of RLS during my second pregnancy, about 7 years ago. I have never sought a diagnosis as it has been relatively mild most of the time. I have always battled insomnia and I also have chronic migraines. I began taking a low dosage of nortriptyline and Baclofen for the migraines. After doing some research, I expected the nortriptyline to worsen the RLS, but it actually seemed to help (even though it didn't help me sleep better).

I have since stopped the nortriptyline for other reasons (still taking Baclofen) and the RLS symptoms have come back worse than ever and not only in my legs as it was before. Is there a connection between migraines and RLS? Why would stopping nortriptyline make RLS symptoms worse?

Stacy B.

Medical Reply

There is no direct connection between migraines and RLS although RLS seems to be more common with many neurological disorders.

Although most antidepressant medications worsen RLS, the secondary amine tricyclics (desipramine and nortriptyline) seem not to bother RLS. However, they don't typically help RLS symptoms. The only association might be if the nortriptyline and Baclofen were helping you fall asleep (they both have sedative properties), stopping them might then cause an increase in insomnia and perhaps an increase in RLS symptoms.

Otherwise, it is a mystery.


Sent: Monday, September 07, 2015 8:19 AM
Subject: change of symptoms

My husband suffers from severe RLS. At the moment he takes OxyContin ER twice a dayÖone 10 mg in the morning and one 10 mg at night. His RLS symptoms have disappeared completely, and he really suffered a lot before. However recently he has had something like the jumps or spasms where his whole body sort of shakes. These are not painful like the RLS for which he is grateful Öbut they do keep him from sitting or lying down comfortably.

We are wondering if this is a side effect of the OxyContin. There is no predictable time when these shakes occur but they usually occur daily sometimes briefly and sometimes for hours. He has tried taking a bit more oxycodone (perhaps 1.25 mg) to see if that would help but to no avail. His doctor here is baffled.

I read on your site something related that mentioned this could be PLMW. Does this sound like what it could be? Is there anything to do about this? Is this a reaction to the OxyContin?

Lucy G

Medical Reply

I cannot say for certain whether your husband is experiencing PLMW but these are not uncommon in RLS patients so that would be a likely diagnosis to explain the jerks. Typically, PLM do not respond well to opioids. They respond much better to dopamine agonist drugs like Mirapex/Requip but I would not suggest treating them with these drugs (they can make the problem and RLS worse over time).

If they are PLMW, it would probably be wisest not to add medication at all to treat them (drugs like gabapentin may also help modestly).

A Reply from Lucy

Sent: Monday, September 07, 2015 4:26 PM
Subject: RE: change of symptoms

I know my husband cannot take any dopamine agonist as he suffered augmentation when on the Neupro patch. But you mention gabapentin. He gets extremely stressed when these shakes/tremors/jumps come on and is unable to rest or relax if it is a severe attack. I am wondering if it is worth trying a small dose of gabapentin when these attacks come on. I will talk to his regular doctor (who has a good knowledge of RLS but has been baffled by these shaking jumpy attacks), but what do you think?

Lucy G.

Medical Reply

It is difficult to determine whether gabapentin would be helpful especially as it is not certain that he is suffering from PLMW. In addition, it can be difficult to determine the correct dose of gabapentin. Many patients do not absorb the drug well at higher doses so failure may be due to lack of sufficient medication in the body. Horizant and Lyrica are much more predictable but may be much more expensive and not covered. Furthermore, sedation occurs with all the drugs in this class.


Sent: Tuesday, September 08, 2015 4:00 AM
Subject: RLS Augmentation Question

I'll try to be brief and give you the Readers Digest version of my situation. I'm a 48 year old male, and I've suffered with RLS for as long as I can remember (I recall going to the doc as a young kid trying to describe 'crazy legs') and was officially diagnosed and began treatment about 8 years ago. I went to the St Johns Sleep Center in Santa Monica, and we began a treatment protocol which began with the usual first line DA's to no avail, then went to Neurontin, and perhaps another or two I can't recall. Ultimately we tried Oxycodone 5 mg capsules and it was clearly the medication for me - almost full relief, and zero side effects. Needless to say it changed my life massively for the better.

I continued this treatment for around 6 years, at which point I moved from LA to South Florida (June 2013.) I quickly discovered that there is a terrible, almost draconian stigma associated with the medication in this state, and the neurologist I found to treat me would not prescribe it. So we tried Lyrica (awful), Neurontin Patch (didn't really help). I had tried Horizant when it came out while still in LA (not effective.) I was losing hope when as a last ditch effort he prescribed Carbidopa/Levodopa 25/100. Surprise, it worked fairly well. It then started wearing off in middle of night, so went to ER version, 50/200. It worked better, but after about 6 months - WHAM, augmentation slammed me.

All the usual...symptoms became much more severe, traveled to arms, broke through to AM and started earlier and earlier in day. I am now taking two of these carb/levo ER 50/200 tablets at night, and the augmentation is doing nothing but getting worse. It's as clear as a bell to me what I need to do--switch to an opioid (of which I have a track record of years of safe, efficacious use) and ASAP. But my doc will not do it.

So that's my situation, and I write to you out of somewhat desperation. Do you happen to know of a colleague somewhere in South Florida (West Palm Beach, Ft Lauderdale, Miami area) that you could refer me to? Any other insight/opinion/advice? I can't tell you enough how much I'd appreciate any help you could offer. I would not think to write out of the blue like this if not for my really almost unbearable current condition. Thank you again, and thank you for all you do for us RLS sufferers.

Edward D.

Medical Reply

This is a typical example of ďIf it ainít broke, donít fix it!Ē

The worst treatment is actually the Sinemet (short acting or long acting) as when taken daily, augmentation is virtually guaranteed. The best advice that I would give your doctors is to get you back on the oxycodone ASAP.

As far as finding a doctor in your area (or Florida in general) who will prescribe opioids for RLS, that is a much tougher issue. You could check the RLS Foundation list of Healthcare Providers who state that they treat RLS (by city or state) but we do not know the level of their expertise or willingness to prescribe opioids (I checked the list but none of the names are familiar to me). I am actually on a committee now that is trying to create a resource list for patients to find doctors with higher levels of RLS treating skills. I tried to get prescribing opioids as one of the tick boxes that must be checked as yes or no by these doctors but the committee members (possibly rightly so) had concerns that this might attract opioid seeking patients.


Sent: Tuesday, September 08, 2015 4:51 AM
Subject: RLS/PLMD

I am 29yrs old and have had RLS for 10 yrs but have only been receiving treatment for about 2yrs we have tried Requip, Mirapex, gabapentin and now Sinemet NOTHING is working. I was recently diagnosed with sleep apnea and have to wear oxygen at bedtime but it seems to have made it worse. I tried to cut out caffeine, tried warm baths, leg massages, walking around, heating pads, ice packs, nothing is helping!

Many nights I lie awake and cry because I am so uncomfortable I have 2 kids ages 5 and 8 and can barely stay awake long enough to get them ready for school some days!!! ANY HELP IS APPRECIATED IM GOING NUTS!!

Adena J.

Medical Reply

Gabapentin does not get well absorbed by most patients. Therefore, even going to quite high doses does not mean that you are getting enough of the drug in to be effective. Horizant (turns into gabapentin but much more of the drug gets into your body no matter what dose) is a much better choice and is FDA approved for RLS. Lyrica is not FDA approved and may be expensive but also works very well for RLS.

If the above treatment does not help, then you should discuss using opioids (oxycodone, etc.) with your doctors. However, most doctors do not know about using potent opioids (which are typically very effective and safe if prescribed appropriately) for RLS and will be reluctant to do so.

You should also have your serum ferritin level checked. If it is less than 50-75, supplemental iron may be quite helpful.


Sent: Tuesday, September 08, 2015 4:06 PM
Subject: Info/suggestions to help RLS

I'm a 36 year old male that has been suffering from RLS for years. I would consider it moderate to severe and causes me issues daily. Until I saw a commercial years ago talking about RLS I had no clue what my deal was. In fact, I remember being very young moving my legs up and down the bed. I was maybe 8-10 years old. So my first attempt was Miraplex from a previous doctor and I didn't benefit from it. I also seemed to have side effects and discontinued using it.

Just over a week ago I decided to try Requip with my current Doctor that I see. Of course he had zero advice nor did he really know much about it. This medication makes me feel very off, doesn't seem to help, and yesterday It felt like my mouth area around my face didn't want to work correctly. Almost numb and hard to smile. At this point I want to stop the medication. Have you heard of this side effect? I have an order to see a sleep specialist but I'm not feeling very confident at this point.

Any suggestions or recommendations? I will add that I've had normal blood work including thyroid and sugar levels all normal.

Mike
(Restless in Michigan)

Medical Reply

Requip and Mirapex are both short-acting dopamine agonist drugs (quite similar to each other). They typically help over 90% of RLS patients get quite significant relief (but some need higher doses and you may have been limited to achieve these benefits due to side effects at lower than effective doses). Side effects are quite common with the dopamine agonists including fatigue, sleepiness, nausea, etc. so it is not too surprising that you experienced side effects with both of these drugs.

The next choice (which would very likely have been my first choice) is Horizant. You should speak to your doctor about a switch to that drug.

The one important blood test is a serum ferritin level (even if your iron levels are normal). The level should be above 50-75 (not above 10-30 that most labs suggest) and if low, iron therapy might be helpful.


Sent: Friday, September 11, 2015 9:54 PM
Subject: Lyrics after Mirapex

I have been using dopamine agonists for the past ten years, 5 years Requip, lastly 4 mg, 5 years Mirapex, lastly 0.75 mg per day. I switched from Requip to Mirapex in one day without tapering without problems. After augmentation with Mirapex became unmanageable, I tapered in one week to zero with the help of opiates (oxycodone, methadone) switching to cannabis after that week. After two weeks on cannabis alone I started taking Lyrica and increasing the dose in two weeks to 600.

However, no effect at all on my RLS. Thus I am now considering returning to Mirapex (on the lowest dose). Is two weeks a fair chance for Lyrica in a withdrawal period? However, shouldn't I at least have experienced some relief from Lyrica? If I would go back to Mirapex, can I taper Lyrica during introduction of Mirapex or should I first get 'clean' and then start Mirapex?

Peter B.

Medical Reply

The simple answer is that since Lyrica seems not to be helping your RLS (which can happen in a minority of RLS cases), it does not really matter when you stop it in relation to starting on Mirapex. However, the more important question is, do you really want to go back on Mirapex? Once augmentation occurs, it is very likely it will reoccur. Even starting at low doses of Mirapex does not guarantee that the augmentation will not reappear.

You may want to consider using a low dose of oxycodone or methadone on a regular basis. This type of treatment can be very effective and very safe if managed properly. Addiction should occur rarely (if ever) and typically the worst problem is constipation. You may want to discuss this option with your doctor.

A Reply from Peter

Sent: Saturday, September 12, 2015 12:12 AM
Subject: Re: Lyrics after Mirapex

Augmentation with Mirapex occurred gradually over the 5-year period. Would it occur faster for the second time? During the Mirapex withdrawal period, oxycodone (5mg) and/or methadone (10mg) did not relieve my RLS symptoms. However, do you think that might be different now that I have been off Mirapex for a month? Would a combination of opiate and Mirapex (low dose) be worth trying?

Peter B.

Medical Reply

Augmentation typically occurs much quicker after the reintroduction of Mirapex in someone with a history of augmentation.

It is quite expected to need much higher doses of opioids for the first few weeks of stopping Mirapex (often 3-5 times the doses needed after this period). Therefore, it is quite likely that the methadone or oxycodone may work much better now. Many patients need doses of methadone at 10-20 mg/day (or more) and even higher doses of oxycodone (as oxycodone is only 75% as potent as methadone).

For patients who do not get full relief with opioids or who can't tolerate adequate doses, we do sometimes add back Mirapex in very low doses but this still represents a significant risk of augmentation recurring.


Sent: Monday, September 14, 2015 4:31 PM
Subject: Magnesium, Iron and Mint Tea

Have you heard of Seratame? If so, do you know how effective it is for RLS? One thing it claims to use is Magnesium Malate because apparently regular magnesium is not absorbed as well. Do you know if this is true? Does magnesium really help iron metabolism and such? Could some peoples RLS issues come from iron not being absorbed or metabolized correctly? (As opposed to just having lower levels of iron)  The website for Seratame is Seratame - Seratame.com | All-Natural RLS Relief.

I have been looking into it for treatments other then RLS. However, I came across some info that stated that mint tea has been found to inhibit absorption of dietary minerals, especially iron ("Caused an increase in unsaturated iron-binding capacity"). Being how popular mint tea is, I wondered if there is a correlation with RLS and people who drink mint tea. Have you heard of anything about this? If so, would poor absorption of iron even effect RLS for someone who is benefiting from Dopaminergic drugs (Mirapex)? Or does lack of iron almost always cause RLS?

Here is the article regarding this if you're curious:
http://www.healthyfellow.com/290/mint-tea-warning/


Also, here's scientific journal about it I found interesting:
http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=931228

Sean M.

Medical Reply

There is nothing in Seratame that has been proven to be effective for treating RLS (despite their claims). They do have correct information about iron deficiency in the brain being associated with RLS but as far as Seratame helping RLS, which remains to be determined by proper scientific research. Magnesium does not aid iron absorption or metabolism. In fact, it may drastically reduce iron absorption; http://www.ncbi.nlm.nih.gov/pubmed/8024640 .

There is no known relationship between mint tea and RLS reported in the literature or that I have heard from my large volume of RLS patients (which only means that we donít know). Low iron levels may worsen RLS but there are many other factors involved so any patientís response to low iron (and treating with iron) can be quite variable. It also depends upon how much iron gets into the brain which is also quite variable.

Low iron has also been associated with increased augmentation from dopamine agonist drugs. So even if the dopamine drugs work well initially, they may worsen RLS with time especially with low iron levels.


Sent: Sunday, September 20, 2015 10:46 PM
Subject: Requip withdrawal issues

My mother, aged 56, suffers from RLS past 32 years. She was on Requip past 6yrs.. She suffered from augmentation in the last two years. We decided to get off Requip and start pregabalin from August 15th with the help of my friend who is a neurologist is USA. She was on 1.5 mg Requip at night. 0.5 mg in morning, 0.5 mg in the afternoon, 0.5 mg at evening. So we started tapering of 0.5 mg dose from morning, afternoon, evening and night gradually every 3 days.

While gradually increasing dose of pregabalin. So by September 4th she was completely off Requip and on 200 mg pregabalin at night and 100 mg in afternoon. But the withdrawal pains were terrible so we had to start with untraced one tablet at night which would give her relief but still no proper sleep. Then the dose has been increased to 250 mg at night with one untraced. It in 3rd week of withdrawal.. Pain is better but hardly 2-3 hours sleep at night and only after 2 am.

We are v worried bout her routine going haywire because of insomnia. Do you think tramadol is causing insomnia? Or is it withdrawal of Requip.. We tried to give clonazepam 1mg without tramadol but she had extremely bad jittery pains radiating all over body. We are extremely worried doctor... Kindly help us manage her...

Dr A G
Dermatologist

Medical Reply

The issue with your mother is that she most likely was experiencing augmentation (a worsening of RLS from taking a dopamine agonist like Requip) especially as she clearly had RLS symptoms starting in the morning (which likely were not there before starting Requip). Decreasing or stopping Requip in this setting always causes a marked worsening or RLS that may not settle down for at least 2 weeks or up to 2 months. Pregabalin is not up to treating this withdrawal from Requip RLS worsening (it would have likely worked well if started before Requip was instituted) and even Ultracet only helps modestly. The insomnia is most likely due to uncontrolled RLS and the tramadol is only an issue in that it is not potent enough to control those RLS symptoms.

The best treatment at this point is potent opioids. We typically use oxycodone or methadone at low dose. Under proper supervision (a physician who is familiar using opioids for RLS), this is very safe and effective. You mother would be able to sleep and live virtually RLS free. After a few months, pregabalin may be added to reduce or eliminate the opioids.


Sent: Sunday, September 20, 2015 11:29 PM
Subject: Ropinirole and St. John's wart

Please can you tell me If its ok to take St. John's wart and ropinirole I suffer with RLS and my doc put me on ropinirole last week (1tab a day) Amazing! No jumping legs!

Jackie M.

Medical Reply

There is not much known about St. John's Wort and RLS or ropinirole. The chances are reasonable that there should be no issues but the only way to find out is to try it.


Sent: Tuesday, September 29, 2015 10:21 AM
Subject: anti-nausea drugs

I am a RLS sufferer based in the UK. I was looking at Domperidone as a RLS anti nausea drug but I have read an article that shows it can exacerbate RLS.

http://www.ncbi.nlm.nih.gov/m/pubmed/22922159/

Adam

Medical Reply

Although domperidone is not available in the USA, we have had our RLS patients use this drug quite a lot in the past, typically obtaining it from Canada or Mexico. I have never heard a report of worsening RLS with the drug but none of the patients who used it in the past had concurrent Parkinsonís disease. It is quite likely that if the drug does worsen RLS, it may be unique to patients who have both RLS and Parkinsonís disease.

These days we use Zofran or Kytril to treat nausea in RLS patients so there is no need for my patients to seek out domperidone.


Sent: Saturday, October 03, 2015 8:46 AM
Subject: Restless Legs making my life a misery?

I have had restless legs from being a child as I was very restless but always told to "keep still" by my parents even though my dad suffered from restless legs. I suffered quite severe restless legs and at times felt like committing suicide as they would jump around until after 3 am every morning and I got very little sleep. Around 10 years ago, I went to the doctors and he prescribed ropinirole and overnight these tablets changed my life to the point where my legs never jumped around.

I have never taken a big dose and now I take 0.50 mg at 8pm and 0.50 mg at around 9 pm and my legs are great. However over the years I have suffered more and more from insomnia which is making my life a complete misery. I always go to bed at around 10-10.30 pm but wake up between 12 and 1pm and sometimes this is as much as I get. During the day I feel like a zombie.
My health has deteriorated and so has my eye sight.

I have been to the doctors and a specialist and they say to come off the Ropinirole to see if this helps. I can't understand why they say this as my legs would just start again and I would not be able to sleep at all. Do you think that the Ropinirole is causing the insomnia or something else? I don't take any other medication.

Jeff S.

Medical Reply

Although the more common side effect of ropinirole is sleepiness, a significant amount of RLS sufferers get insomnia from the drug. You could change to Mirapex which is another dopamine drug (and therefore would make this transition quite easy as it should take care of your RLS as well as ropinirole) but there is an excellent chance that it also would cause insomnia (only trial and error can determine whether that would happen).

The only way to stop ropinirole without experiencing a marked worsening of your RLS for a few weeks to a few months is to replace it with an opioid (oxycodone, methadone). This takes some expertise (although it is typically very safe and effective) and most doctors do not like to prescribe opioids.

A Reply from Jeff

Sent: Sunday, October 04, 2015 2:59 AM
Subject: Re: Restless Legs making my life a misery?

I live in the UK so not sure if Mirapex is a prescribed medicine but will ask my doctor. What I never included in my email is that I also think that Ropinirole is also making me have hallucinations and I have been feeling very negative as a person and a bit depressed.

I have read that magnesium in large doses (400-800mgrams) can help some people with RLS but unfortunately I get really bad stomach off magnesium so don't know if this works. What a shame there isn't a natural cure for this horrible relentless inconvenience and I feel so sorry for anyone who suffers from it.

Jeff S.

Medical Reply

Mirapex (pramipexole) is available in the UK. However, the odds are high that you may experience the same problems as with ropinirole.

You should also have your serum ferritin level checked as iron therapy can be helpful for those with levels below 50-75 (which is much higher than accepted normal levels).


Sent: Monday, October 05, 2015 1:24 PM
Subject: Desperately seeking advice from expert

When a patient only have restless legs in late evening and night, will the depot formula of oxycodone be sufficient? I tried Targiniq (OxyContin & naloxone) altering between 5-10 mg doses, the same with OxyContin 5-10mg. I have been using Sifrol 0.18 at evening for many years until it stopped working. Also tried Requip 10 mg depot formula for some weeks. But I was tired during the daytime. The same on Neupro (rotigotine) Tonight I am starting Lyrica 75 mg, very afraid of the possible sedative reactions are daytime.

Since I have the restless legs-symptoms only nighttime, do you think Lyrica only at evening be ok? Do not want to be more tried than necessary. Depressed because I do not find the correct solutions. If I could choose, I would reintroduce Sifrol. Also gave a problem with insomnia, and knowing the dopamine agonists play a negative role here. Sleep deprived since June. In hospital.

Elisabeth S
Greetings from Norway

Medical Reply

It is surprising that the Targiniq and oxycodone did not improve your RLS. Lyrica is a good choice but you may need a higher dose. When stopping the pramipexole (Sifrol), it may take 2 weeks before the RLS calms down enough to adequately relieve the RLS symptoms. Lyrica is usually short acting enough that next day sedation should not be an issue for most patients.


Sent: Tuesday, October 06, 2015 8:53 AM
Subject: hydrocodone issues

Iím female, just turned 60, have had RLS for 20 years. Iíve written in the past and received advice from Doctor Buchfuhrer. Iíve been on Mirapex for close to 15 years and have definitely suffered augmentation from it. It was suggested to use methadone to get off the Mirapex. That was in 2006. The methadone worked beautifully at relieving all my symptoms and I dropped the Mirapex from 1.5 mg to 1, which where Iím still at

After a month/6 weeks on methadone, I started having panic attacks and my Pain Specialist took me off the methadone (went through a withdrawal that was awful even though I was on less than 10 mg for a short time). Iíve been on hydrocodone ever since but my family practitioner is less than enthused about it and Iíve recently learned that the lack of appetite, lack of balance and coordination (I cannot walk a straight line) are all side effects of the hydrocodone. Itís turning me in a recluse.

My problem is that Iím still Mirapex per day as well as 3-4 5/325 hydrocodone (down from the 10/650 originally) and really need to eliminate both of them. Iíve had terrible augmentation this past summer, itís made my life miserable. I donít know where to turn. Iíve tried 3 different neurologists but all they do is order another MRI (to check for MS) or send me home with the latest pill samples (last time is was Requip, I never went back). I feel Iíve run out of options. Iíve been on 18 different drugs and seen 14 doctors for RLS in the past 20 years (some of the drugs were really questionable as to their usefulness at all). If you like I can send a list.

Brenda
South Dakota

Medical Reply

Your case is somewhat complicated by several issues. The purpose of adding methadone (or any opioid) when treating augmentation is to completely eliminate the Mirapex (which is not what you did). Once the Mirapex is completely stopped, the RLS will calm down (after about 2 weeks) and be much easier to treat. As long as you keep taking Mirapex, you do not get this benefit and of course, augmentation may easily return (Mirapex at 1 mg is still quite a high dose for RLS).

You are now having worrisome side effects with a less potent opioid, hydrocodone (not to mention that you are taking Tylenol which is attached to the hydrocodone which does not help RLS and could result in side effects with long term use) so it is hard to suggest which opioid to try next (especially as you had a very unusual withdrawal reaction after taking a relatively low dose of methadone).

You clearly need to see an RLS specialist to help sort this out. As you have already found out, regular neurologists know very little about treating difficult RLS cases. With proper expert care, almost all of my patients do very well once we find the right therapy.


Sent: Tuesday, October 06, 2015 12:12 PM
Subject: RLS Advice Needed

I wrote to you previously and you helped point me in the right direction of getting off of Ropinirole, Lyrica, and others. Essentially I was going through augmentation.

Since then, I have successfully relieved myself of those medications. I was instructed to take Horizant (2 600mg) pills in the evening. After no success, Neupro 1mg was added into the mix. I have still found no relief. I will have to be set up with a new doctor (which is a 5 hour round trip for me) since my previous doctor is no longer available..

My family doctor feels as if sheís done all she can for me. Sheís the one that originally tried the Ropinirole, Lyrica, and Gabapentin. She tried me on Tramadol and eventually moved me up to 5 mg Norco, 4 times per day. They have helped a lot but each one only seems to last at best 2.5-3 hours. And if I wait too long before taking another, then it feels as if itís harder for that one 5mg Norco to work effectively.

With the recent changes in prescribing opioids, I donít feel comfortable asking for anything else for the pain, as Iím fearful of losing what I have currently and being off worse than before. Over the last 4 months, the RLS has worsened to the point where I quit a new (second) job making more money as the hours involved and amount of time spent walking just killed my legs. Any advice would be greatly appreciated!

Kevin P.

Medical Reply

It is difficult to provide you with a complete answer to your problem as it would take a more thorough review of your treatment and exactly what happened with each drug and drug combination.

However, there are some issues with the hydrocodone. I generally do not use that drug for daily treatment of RLS as it contains Tylenol which does not help RLS so the risk of long term side effects from the Tylenol is not balanced by any benefit. Furthermore, as you have already noted, the hydrocodone in Norco only lasts a few hours.

I typically prescribe methadone which usually covers about 8-10 hours of RLS discomfort. However, you may have difficulty obtaining methadone as most doctors do not prescribe the drug and thus it is out of their comfort zone. OxyContin is another choice for you to discuss with your doctors.

With proper care, you should be well enough for almost any job.


Sent: Wednesday, October 07, 2015 8:29 PM
Subject: RLS & Lexapro

I've had RLS for 20 years. I started taking Requip ER 6 mg about 5 years ago to treat RLS. I started in smaller Requip dosages but 6 mg was the smallest dosage for me that worked. I started taking Lexapro 40 mg for generalized anxiety disorder with OCD about 13 years ago.

I recently titrated off of the 40 mg of Lexapro (for generalized anxiety) since the Lexapro seemed to be making the RLS worse and my provider and I felt my anxiety was under control. I titrated off of Lexapro about 7 months ago and noticed a great reduction in RLS symptoms as I was getting off of Lexapro. After getting off of Lexapro, I initially was able to completely go off of the 6 mg of Requip ER that I was taking for RLS for about 4 weeks. However, after a month I had to go on 2 mg of Requip as the RLS duly motions came back. Nevertheless, stopping the Lexapro made the RLS symptoms much more bearable.

In the past two weeks my anxiety has increased since being off of Lexapro and I would like to go back on an anti-anxiety medication. What anti-anxiety medications will not make RLS worse like Lexapro did so that I can discuss those options with my providers? Also, will weight loss reduce RLS symptoms for persons that are overweight

Eric S.

Medical Reply

Lexapro and most all the anxiety/antidepressant medications make RLS worse (as you have already noticed). The only antidepressant medication that does not worsen RLS is Wellbutrin but it often worsens anxiety. Weight loss does not make RLS better or worse.

Another choice is to change to an alpha-2-delta drug (Horizant, gabapentin or Lyrica) as they may control your RLS and also help control anxiety symptoms for many patients.

A Reply from Eric

Sent: Sunday, November 03, 2013 7:49 PM
Subject: RLS help

I've had RLS since about 13 y.o. from what I can remember but was only diagnosed 4 years ago when I saw a commercial on TV for it and asked my MD about taking meds for it, after which I was Rx Requip. I was amazed how quick it worked and what relief I felt. "So this is what my legs should feel like I thought to myself." Now I wish I had never taken anything. Prior to taking meds, it hurt and I had to constantly move my legs, but it was tolerable. After two weeks the meds stopped working and so I was referred to a Neurologist. They put me on Requip XL in addition to the Requip (there was also a period where I tried Mirapex but it didn't work as well or it didn't feel as strong as the Requip). Then that didn't work after about 6 months and now I'm taking 4 mg Requip XL and 2 mg Requip (regular).

The XL works great for the duration of the day, but the regular 2 mg is what I really need at around 5 pm (I take the XL 4 mg at bedtime). The problem with the regular 2 mg Requip (non-XL) is it makes me anxious and irritable (and tired). I also take Lipitor and Lexapro 40 mg. For the two weeks I've taken a 1/2 tablet 5/325 oxycodone and that's helped immensely and I've been taking that once per day. However, now my legs are getting worse again and I'm really at wits end.

My legs are in so much pain that it really is effecting my daily life and relationships (if I go out to eat for dinner I have to take a Requip 2 mg (regular) but it makes me irritable and tired so I don't enjoy myself. And since alcohol makes it worse, I can't have a good time with a glass of wine. The best part of life is from when I wake up (7 am) to 3 pm. I'm almost on a natural high because I don't have leg pain.

But then after 3 pm it gets so bad that I just fear the pain. Is there anything I can do differently and how bad is this going to get? I'm really worried because I'm young, in my 30s and if this gets worse I can't imagine. I also fear living off of narcotics which I don't want to do. I am overweight which my neurologist told me could be a contributing factor as possibly is my Lexapro. I keep trying to exercise and do, but not consistently.

Eric S.

Medical Reply

Your neurologist is correct about the Lexapro worsening your RLS (Wellbutrin may be a better choice if it works for you as it does not affect RLS) but totally incorrect about your weight contributing in any way to your RLS problem.

The real concern is that the dopamine agonists (Requip) have caused augmentation (worsening of RLS from taking the dopamine agonist) and taking more Requip will help temporarily but only add fuel to the fire and continue to worsen your RLS. The treatment is to get off of all your dopamine agonist drugs which is very difficult to do as your RLS will get markedly worse for several weeks or months before it starts to get better. RLS experts typically treat this transition with potent opioids (like oxycodone) but it most often takes an expert with lots of experience to handle this situation without causing significant discomfort.

However, rest assured that with proper treatment from a physician who is well versed with treating difficult cases/augmentation, most all RLS sufferers should be able to get excellent relief and live without being plagued by RLS symptoms.


Sent: Thursday, October 08, 2015 12:15 PM
Subject: RLS

Brief synopsis
Primary RLS, serum ferritin 103,augmentation from Mirapex, currently on Neupro patch. After 2 good years on 1mg Neupro patch my RLS is back and recently spread into both my arms. I moved up to 2 mg a week ago but no improvement.

I am suspecting augmentation again but my understanding was that normally with augmentation when you raise the dose there is usually a period of improvement before symptoms became severe again whereas the upping of my Neupro dose didn't give me any improvement even for a short time. In fact symptoms were worse when I upped! As usual your thoughts on whether or not this sounds like augmentation will be greatly appreciated. I have not made any other changes medication wise,

Kim W.

Medical Reply

Augmentation is still the most likely explanation. Since the Neupro patch releases medication slowly, it is possible that you might need to go to 3 mg/day to see improvement. The augmentation process may be severe enough that you need significantly more medication to overcome those worsened symptoms.

A Reply from Kim

Sent: Tuesday, October 20, 2015 4:17 PM
Subject: Drug holidays

I would value your opinion on "drug holidays" from dopamine agonists. I am administrator on a support group and hear this mentioned occasionally. The aim appears to be to reset the dopamine receptors. Is it possible to "reset the dopamine receptors" or is this just jargon? Would you say the longer the drug holiday the better in order to help prevent augmentation?
 

Can I also ask your opinion on Magnesium supplements/oil as this crops up on the support group on a regular basis? I feel it is placebo but maybe I am wrong!

Kim W.

Medical Reply

Drug holidays or rotation therapy do have a role for some difficult RLS patients. Taking a few days, weeks or months off a dopamine drug does reestablish its potency in cases of tolerance or even augmentation. Sometimes the effects last only a few days but often we can get at least a few weeks or longer. In those cases, it might make sense to alternate with an opioid especially if the opioid causes significant side effects such as constipation or mild nausea (or even some tolerance). Like I noted above, this rotation of drugs may occur every few days, weeks or months.

Resetting the dopamine receptors is a term that many use (I have even used it occasionally) but we have no idea if that is what is really happening although many experts think that daily dopamine agonists cause down-regulation of the dopamine receptors which is reversed when off the DA after 10-14 days.

Once a drug holiday exceeds a few weeks, there is likely little benefit for prevention of augmentation recurring. What limits the length of the drug holiday typically are issues (side effects usually) from the drug used instead of the DA during the holiday.

There was some very early weak/poor evidence that magnesium may help RLS but further study revealed no benefit.


Sent: Thursday, October 08, 2015 10:29 PM
Subject: Restless Legs and Oxycodone

I have had Restless Leg Syndrome for many years now. I was taking Pramipexole for about seven years then ropinirole for the last three years. The dosage for the Ropinirole was 2 mg in the evening and 2mg modified release at bedtime. Because the symptoms have become severe during the daytime I have been told by my neurologist to take the 2mg of immediate release as usual in the evening but has replaced the modified release tablet at bedtime with Oxycodone 5 mg. Since taking these for a couple of days I have had virtually no sleep whatsoever. Can you please tell me if this is because of withdrawal symptoms from the night time Ropinirole and how long will it last before the Oxycodone takes effect.

Jayne N.

Medical Reply

The issue here is that you most likely have developed augmentation (a worsening of RLS from taking a dopamine agonist drug like pramipexole or ropinirole). Most specialists recommend stopping the ropinirole completely (tapering off the drug over a week or so) and replacing it completely with an opioid like oxycodone. You may need a significantly higher dose of oxycodone per day (often up to 30 mg).

After 10-14 days, most patients find that their RLS symptoms start to improve and they need much less of the opioid. However, with any decrease (or when stopping completely), there is a marked worsening of RLS that you have already noticed that may require higher doses of oxycodone.

A Reply from Jayne

Sent: Friday, October 30, 2015 12:53 AM
Subject: Re: Restless Legs and Oxycodone

The Oxycodone seems to be working to take the place of the Ropinirole at bedtime but the RLS is no better during the day. I still have problems on journeys and sitting for more than ten minutes at a time which has become very tiring and inhibiting. It has been suggested that I could use a rotigotine patch but then it would be going back to more dopamine agonist drugs again. I still take 2mg Ropinirole at 6pm to get me through the evening.

Jayne N.

Medical Reply

The first issue is that to improve your RLS from augmentation fully, you should get off the ropinirole completely. Staying on the ropinirole at 2 mg may be preventing you from being able to get by with less oxycodone (after the initial 10-14 days of marked worsening after stopping the ropinirole).

Changing to the Neupro (rotigotine) patch may work and take care of your daytime issues. However, there is the risk of augmentation occurring again (although less of a risk than ropinirole).


Sent: Saturday, October 10, 2015 4:14 AM
Subject: My RLS breakthrough

I admire your work and have the greatest respect for your commitment to providing relief from a horrible affliction.

Please allow me to share my personal breakthrough with RLS. After getting progressively worse for more than 15 years I had advanced to a state of persistent misery which made my completing a day of work behind a desk almost impossible. I dreaded getting into bed at night. I learned to read the newspaper while walking around the dining table. With no clue that I had a treatable condition, I noticed that some variations in my diet seemed to cause some reduction in my symptoms. For the past 5 years I have kept a record of virtually everything I have eaten and how I felt the following days.

After achieving quite a bit of relief I eventually discovered certain foods were ďtriggerĒ foods that would bring on symptoms about 24 hours later. I mistakenly concluded that these foods, such as spinach and Swiss chard, were problematic because they are goitrogenic. About 6 months ago I finally put the final piece into the puzzle. My RLS was brought back by a non-goitrogenic soup with leeks, okra, carrots, tomatoes, potatoes and zucchini. Somehow I came up with the idea of researching levels of oxalic acid in foods. I discovered that my vegetables were all moderately high in oxalic acid. By making a soup I had concentrated that acid into a perfect trigger for my RLS.

By eating a low oxalate diet I have achieved complete cessation of all RLS discomfort. I can work at my desk or drive in my car all day with no discomfort. I lie comfortably in bed no more aware of my legs than I am of my ears. At 67 years of age I get up 3 or 4 times a night. I very seldom have any trouble getting back to sleep. When I do have trouble sleeping I have no urge to toss and turn or wiggle my legs.

I am no scientist but I have read that oxalic acid interferes with the absorption of minerals from our food. Perhaps those of us with this condition donít maintain proper stores of these minerals in our bodies and, if our daily replenishment is interfered with, we manifest RLS.

There are websites devoted to low oxalate diets for people who have a tendency to form kidney stones. The information on these sites is somewhat inconsistent. Different foods have tested at different levels of oxalic acid in different studies. There is a certain amount of conjecture about what constitutes a high oxalate food. For example, black tea leaves are extremely high in oxalic acid, but Iím able to tolerate several glasses of brewed tea at lunch without recurrence of symptoms. What works for me is as follows:

During the past 6 months my primary vegetables have been broccoli, cauliflower, cabbage, peas, mushrooms, corn, cucumber and all types of lettuce. These I eat in large servings. I eat potatoes, tomatoes, onions, Brussels sprouts, celery, bell peppers and chili peppers in small to moderate amounts. I sometimes boil a sliced carrot and add it to the peas. When cooking vegetables I boil them rather than steam them, although I generally roast cauliflower, braise cabbage and grill corn. I avoid unboiled potatoes such as French fries and those that are baked or oven roasted. I only eat small quantities of tomato sauce and olives. I sometimes have small servings of zucchini or yellow squash sautťed in olive oil. Sauerkraut is an interesting alternative to plain cabbage. Pickled cucumbers are good.

I have been limiting my fruits to melons, mangoes, apples, green and red grapes (no purple), and cherries. I think bananas and oranges are OK, but I donít eat them often. I enjoy lemon and lime juice added to drinks, but I donít throw in the peel because of its high oxalic acid content.

I avoid whole grains other than oats and corn. A couple of slices of white bread or a hamburger bun are fine, but I wouldnít eat half of a large thick crust pizza. Pasta is actually low in oxalic acid. I eat corn tortillas most days. I eat a lot of white rice. My breakfast usually includes steel cut oats cooked slowly with chopped apple and cinnamon.

When pinto or black or white beans are served I limit myself to a small portion. I have generally been avoiding all nuts and seeds. I use black pepper moderately. I freely eat eggs, red meats, chicken, fish and shell fish. I eat cheese most days.

When I began trying to perfect a low oxalate diet, I reduced my coffee consumption and switched from black to green tea. I have gone back to a couple of mugs of ďhalf caffĒ in the morning. And I havenít had any problem with the black tea which is served as iced tea in most restaurants. I drink several glasses of wine with supper.

I donít feel like I have reached the final insights available from my research. I will continue to test which foods are safe for me to eat. Iím not sure about asparagus. Some sources say kale is low in oxalic acid. We shall see. Right now I want to share my progress in the hope it can help others.

Jim H.

Medical Reply

We have not gotten any email letters or communications in the past about oxalate affecting RLS. We will post your letter so that others may learn from your experiences.


Sent: Tuesday, October 13, 2015 3:38 AM
Subject: Domperidone

I took one dose of 10 mg of Domperidone and after about an hour or so my Restless legs have got a lot worse. Have you ever heard of this as I thought Domperidone is RLS friendly and doesnít cross the brain barrier?

Jake D.

Medical Reply

Here is the only reference to domperidone worsening RLS (but only in patients with PD).

Parkinsonism Relat Disord. 2013 Jan;19(1):92-4. doi: 10.1016/j.parkreldis.2012.07.019. Epub 2012 Aug 24.
Restless legs syndrome outside the blood-brain barrier--exacerbation by domperidone in Parkinson's disease.
Rios Romenets S1, Dauvilliers Y, Cochen De Cock V, Carlander B, Bayard S, Galatas C, Wolfson C, Postuma RB.


Abstract:

INTRODUCTION:
Models of dopaminergic function in restless legs focus on central dopaminergic neurons. Domperidone, a peripheral dopamine blocker that cannot cross the blood-brain barrier, is commonly used in Parkinson's disease. After encountering a case of restless legs syndrome that dramatically worsened with domperidone, we assessed whether Parkinson's patients may have exacerbation of restless legs with domperidone.
METHODS:
From two Parkinson's disease cohorts, we assessed restless legs prevalence according to standard criteria, in patients taking vs. not taking domperidone. Regression analysis was performed, adjusting for age, sex, disease duration, UPDRS, dopaminergic medications and other medications.
RESULTS:
One hundred eighty four patients were assessed, of whom 46 (25%) had restless legs. Thirteen out of twenty seven (48%) patients on domperidone had restless legs compared to 33/157 (21%) without (p = 0.010). Other medications were not associated with restless legs.
CONCLUSION:
This unexpected finding suggests that dopaminergic neurons outside of the blood-brain barrier may be important in restless legs syndrome pathophysiology.

A Reply from Jake

Sent: Wednesday, October 14, 2015 5:37 AM
Subject: Re: Domperidone

What is the best form of iron to take?

Is there anything else i can take with it to help the brain absorb it. e.g vitamin C?

Jake D.

Medical Reply

Ferrous sulfate 65 mg elemental iron is one of the better over the counter preparations. Taken with orange juice on an empty stomach improved absorption from the gut but nothing makes the brain absorb it better.


Sent: Sunday, October 25, 2015 8:38 PM
Subject: I have had RLS all my lifeÖ.

Twelve years ago I told my doctor about my "jumping legs" and how it was ruining my life, at the time I was 61 years old. She had just read about Mirapex and how it might help RLS. That night I took .25mg of Mirapex, yawned three times and slept 8 hours. I have never any side effects. Over the years I have needed to up my dosage to calm the restless feeling. At the moment I need 1.25mg to calm my legs.

My new family doctor, the one I had retired, says that only .50ml of Mirapex is recommended for RLS and I'm 50% over so I need to go to a sleep specialist for help. I'm have been sent to the sleep clinic, I live in Boulder, Colorado, and have seen someone who had my Iron tested, it is low, the iron that feeds my brain, so I'm on iron and 1.25 mg of Mirapex. I have been taking Foesol Complete for a week and 3 nights I only needed 1mg of Mirapex. I think the Iron is helping. This Doctor wants to get me off of Mirapex because of the augmentation. She is hoping that Iron is my problem.

I'm a 73 year old woman who is active all day, my hobby is to refinish vintage furniture and sell it. I love working and support a daughter and grandson. Because I'm active all day, I don't have restless legs until the evening. I have a strong cup of coffee at 3 in the afternoon when I'm winding down, .25mg of Mirapex at 8 PM and 1mg at say 9 PM and I'm fine all night and the next day. Why is there a problem with having to up my dosage at my age? I need your help because the sleep specialist is thinking of taking me off the Mirapex, and is not worried that I will go through hell for 2 weeks or so, and hoping to reset something and find another medication.

Kathie A.

Medical Reply

Your doctor who recommended stopping Mirapex is correct. Although Mirapex .5 mg is the maximum FDA recommended dose for the drug. In the past, many RLS experts used doses of up to 1.5 mg in severe cases (and some still do) but most experts now realize that is a very bad strategy.

The problem that you are experiencing is called augmentation which 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 (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.

Check out this link for up to date information on how to treat augmentation from a group of us experts that is available on the web:

http://irlssg.org/augmentation/

A Reply from Kathie

Sent: Tuesday, October 27, 2015 7:12 PM
Subject: Re: I have had RLS all my life..

One question for you. The reason I got on Mirapex to begin with was the my RLS was already intolerable. If I can get back to that level off Mirapex I am still in trouble. I have tried Gabapentin a few weeks ago, given by a sleep specialist, I walked around in a daze for 3 weeks and my RLS was worse started earlier and more intense. I was taking 1 mg of Mirapex and Gabapentin. It is beginning to feel that an opioid is all that I can take for the long term. How can that be better then Mirapex?

Kathie A.

Medical Reply

Although no one wants to be on long term opioid therapy and many patients canít tolerate them, opioids are actually super effective for most patientís severe RLS symptoms and surprising safe when taken in low dose (which is all we use for the vast majority of RLS sufferers). I have had many patients on low dose opioids for over 25 years who are doing great on the medication with no significant side effects and NO escalation of dose. In fact, most of them just say that it is like taking a cholesterol pill in that they do not even notice that they are taking any medication except that they have no RLS symptoms.

A Reply from Kathie

Sent: Wednesday, October 28, 2015 5:53 PM
Subject: Re: I have had RLS all my life..

I have an appointment with my sleep specialist in a few weeks. She has me on Iron as my blood test showed I was low in brain iron. It is helping and most nights I can take 1mg of Mirapex instead of 1.25 mg. I know she is going to try to reduce the Mirapex further. Is there something I can take while reducing the Mirapex. At one stage in my life many years ago I sometimes took Valium when I was traveling from the US to Australia, so that I could reset my sleep pattern. It also helped my RSL. I read that Ambien might be helpful. Would you recommend it. I worry about taking opioids. Maybe I shouldn't. I don't know how competent this clinic is, I wouldn't mind your opinion. I'm worried about going through hell for 2 weeks or a few months. I live in a small house with my daughter and 4 year old grandson. Any help easing the transition from Mirapex to something else I would be grateful for.

Kathie A.

Medical Reply

Iron is helpful for RLS but typically, oral iron therapy takes months to be effective and most patients have trouble increasing their bodyís iron sufficiently due to absorption issues (the more the iron levels increase, the less the body absorbs). That is why it often requires intravenous iron to help decrease RLS symptoms.

Sedatives are helpful for treating insomnia related to RLS. However, they can only go so far especially as the RLS worsens dramatically with decreasing doses of Mirapex (and even much worse when finally stopping the drug). We usually prefer short acting sleeping pills like Ambien.

Getting off dopamine agonists can be done without opioids but you will experience a lot of suffering in the process.

A Reply from Kathie

Sent: Wednesday, October 28, 2015 7:11 PM
Subject: Re: I have had RLS all my life..

Actually I think I'm scared about what is in front of me. I truly thought my RLS days were behind me. The sleep specialist talked about intravenous iron, she might do that next. Is it possible to reduce Mirapex and take opioids at the same time so the suffering is minimized? Is the truth there is going to be suffering no matter what I do?

Kathie A.

Medical Reply

Some experts like to slowly wean off the Mirapex (especially at higher doses such as yours) while slowly increasing the opioid dose. I generally have the patient go cold turkey off Mirapex while starting reasonable doses of the opioid. Most of the time, this transition can be near painless but it does take some knowledge and experience from the treating doctor working closely with the patient.


Sent: Saturday, October 31, 2015 7:24 AM
Subject: RLS/PLMD

I am having some problems with my RLS, I have been on all kinds of medication and been tested for every blood work possible that is out there. Everything came back fine. I have seen a orthopedic doctor, rheumatologist, neurologist and they all say it's RLS, but I get really bad achy and throbbing in my lower legs. I am on gabapentin and tramadol and when my legs get really bad nothing seems to help. I researched foods to avoid, exercises, etc.

They say the achy and throbbing that I get doesn't sound like it's part of RLS. They get so bad even when I walk it's still there, unless I take nice HOT bath. I also have depression and anxiety that I can't take anything for because it makes my RLS extremely bad. Now, I feel it's under control, but the problem is when it does get bad, they don't know what to do for me. I also have a history of substance abuse for headaches, and now I wish I would have never done that. It was stupid of me, because now when they do get bad (RLS) I don't know what to do.

I have such a high deductible for insurance I don't want to see doctors now because all they say is nothing is wrong and I just have to deal with it, but some days I can't sleep for a whole week sometimes and I almost got into a car accident 3 times in one morning dropping my girls off to school because I was so tired. My anxiety and depression sometimes makes its worse, but can't take anything for it because it just makes my RLS bad, but then my anxiety is just crazy some days. I have been doing mediation on YouTube to help control it. No support from my husband because he thinks its all in my head.

Jamie A.
Mother of 2

Medical Reply

As you have already found, most doctors including specialists know very little about treating difficult RLS cases. Most patients can achieve excellent relief from their RLS symptoms with the help of a real RLS expert (however, the true RLS experts can be hard to find).

Your case is obviously complicated so I would recommend that you see an RLS expert who can guide your therapy and bring you relief (in which case, your anxiety and depression may also resolve).


Sent: Monday, November 02, 2015 12:49 PM
Subject: Doctor will not prescribe Methadone

I have been taking hydrocodone for my RLS for years now. It does work but the effects wear off within 2 hours or so, requiring more doses. Following your recommendation, I asked my primary care physician if I could switch to Methadone. He refused, saying that he was afraid of addiction. I also get a lecture about addiction every time I see him. I have your book on treating RLS and, as you have advised in the past, I suggested that he take a look. He was definitely not interested. I have tried to share this information with other physicians and always get the same reaction. They seem extremely offended.

My current doctor is not in my insurance network and I pay $139.00 a visit, but I continue to use him because at least he will prescribe some narcotics. Other physicians have flat out refused. I have put off dealing with other health issues due to the cost. So far I have been lucky and relatively healthy. Since they have reclassified hydrocodone, I now have to call and pickup my prescription every month. I live in rural area and if I switch doctors the round trip to pick up a prescription would be 70-80 miles and I would have to take time off work.

It is so frustrating to have a cheap, reliable, and safe solution for such a miserable condition placed under all these constraints. If they only knew how carefully I think about each and every dose. Being treated like a drug addict is humiliating. I wish there was some other option, but I have tried the other classes of RLS medications and they do not work for me.

Sorry, I know I'm whining but I know there are others out there like me who are experiencing the same issues.

Paula R.

Medical Reply

Unfortunately medical care is often challenging when living in a rural area and difficult RLS pushes that challenge to the extremes. I typically donít like RLS patients taking hydrocodone as it is combined with acetaminophen and since the acetaminophen does not help RLS symptoms, you are exposing yourself to a drug that when taken on a daily basis has a small chance to cause serious side effects in the long term.

There may be a solution if you can find a doctor within a reasonable distance to see periodically (I see my severe RLS patients every 6 months once they are controlled on opioids) who can then either mail you the controlled prescriptions (I use FedEx to assure secure arrival) or now many doctors and most pharmacies (especially national chains) can prescribe opioids electronically (I am already doing that).

I will post your email so that others can benefit and chime in.


Sent: Sunday, November 08, 2015 4:49 PM
Subject: Re: Mirapex/Requip

I am using Mirapex and have to keep increasing the dosage. I'm now up to 2.5 mg taken in the evening. I see that there are good things said about Neupro patches but it is cost prohibitive in Ontario. The cost is around $150 for 30 patches and I'm on a fixed income.

I did get one package of 2 mg/24hr patches but didn't have a lot of success with them I'm not sure that they were being prescribed properly.

Jane M.
Canada

Medical Reply

Unfortunately, you are already on such a high dose of Mirapex that Neupro at the highest approved dose for RLS at 3 mg is not even close to covering your RLS. At your dose of Mirapex 2.5 mg, it is very unlikely that anything other than opioids will enable you to be successful to get of Mirapex.


Sent: Wednesday, November 11, 2015 3:52 AM
Subject: Restless Legs - Augmentation with Pexola (Pramipexole)

I've had restless leg syndrome for many years. In late 2009 I discovered that there was a drug called Requip that I could use and my doctor prescribed it for me. In about 2012 the type of Requip I was using was taken off the market and my doctor put me on Pexola (Mirapex). I was on 0.125mg at night. My restless leg syndrome was definitely much worse if I forgot my tablets or took them late than it was before I started taking the meds.

In about 2014 I was on 0.25mg at night. Now I am struggling with waking up in the middle of the night and having to take another 0.25mg to stop the legs going. The distress is far greater than when I wasn't on the medication.

I've been advised that this is augmentation and that taking the medication makes the RLS worse. I think if I asked my doc he would prescribe a greater dosage of Pexola, he already knows that I use more than my prescription per month. I am on long leave and am in a position to take a drug holiday - will it help? Should I change my medication altogether or can I reset the clock by going off them for a while?

I'd be most grateful for your help as I am struggling some nights taking 2 x .25mg and still not sleeping.

Mandy S.
South Africa

Medical Reply

The problem that you are experiencing is called augmentation which 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 (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.

Check out this link for up to date information on how to treat augmentation from a group of us experts that is available on the web: http://irlssg.org/augmentation/

As far as taking a drug holiday, you will suffer greatly (unless following the above suggestions). Pexola (Mirapex) will then be more active but will quickly (weeks if you are lucky) augment again requiring another drug holiday. Not a very good solution unless you have a drug like an opioid to alternate with.


Sent: Thursday, November 12, 2015 3:09 PM
Subject: Severe symptoms after stopping Vicodin use.

Iíve had very severe limb movements during the night after stopping ( 5 mg 4 x daily for about a year ) Vicodin use. My doctor started me on Carbidopa-Levodopa 25-100, 5 months ago and increased the dose recently from 1 before bedtime, to 1.5 before bed and 2 during the day. Generally leg movements have occurred nightly for about a year, but walking seemed to help greatly and if not, the leg movements would subside in an hour or so. I tried Requip before and the first night both legs were uncontrollable for several hours and that scared me from continuing use.

Back to the Vicodin, for the last month my symptoms have been harder to manage, but after stopping the Vicodin for 3 days ( prescription filling problems ) the severe movements which were only in one leg or the other before, increased in duration to 4-5 hours, and also both arms were doing the same and I have never had arm problems at all. So, one leg would cease, the other would start, and the same with my arms. For a short time ( 1/2 hour ) both an arm and a leg were firing at the same time. Needless to say , this drove me nuts and sleep was impossible.

Do you think it was due to Vicodin withdrawal or augmentation or both ? I will have Vicodin available in the next few days. Also take 1mg. Ativan 3 times daily for anxiety. I was also diagnosed with MS earlier this year. I am 60 years old.

I see my doctor in a few days, but she is admittedly not very up on this malady. Should I seek a specialist for continued treatment, and if so, how do i find one ?

James K.
Ohio

Medical Reply

It is not clear whether you have PLM alone or with RLS. Either way, Sinemet (carbidopa/levodopa) is always the incorrect choice as after helping the problem, it will markedly worsen it due to augmentation.

Vicodin helps RLS considerably but does not help PLM very much.

I strongly suggest that you see an RLS specialist. However, although most sleep specialists and neurologists claim that they can treat these disorders, they would likely have difficulty with your more complicated case. You might consider going to one of the RLS centers of excellence which can be found on the RLS Foundation's website (www.rls.org).


Sent: Thursday, November 12, 2015 11:58 PM
Subject: RLS and gabapentin

I have been on gabapentin for 2 years and have recently about a month or 2 ago have had my dosage upped to 600 mg 3 times daily but I am still finding no relief in this. Is there anything else I can do?

Leslie D.

Medical Reply

The issue with gabapentin is that it does not get absorbed very well. At lower doses (about 300 mg) about 60% of the drug gets absorbed. However, as the dose is increased, a much smaller percentage gets in (like 30-40% at 600-900 mg). So, increasing the dose may provide only a very small (if any) further benefit. Changing to Horizant (a FDA approved RLS drug that turns into gabapentin but 75% of the drug gets absorbed no matter what dose) or Lyrica (also gets very well absorbed but not approved for RLS) may work much better.


Sent: Sunday, November 15, 2015 10:25 PM
Subject: Requip

I have been diagnosed with PLMS and according took Clonazepam for years. Unfortunately it left me feeling exhausted the next day so I tapered off over the course of a year and now am trying other medication to find something effective. I first tried Lyrica however, although 300mg kept me asleep most of the night, the next day fatigue was still very debilitating.

I have started moving off of Lyrica and onto Requip and am really struggling. I reduced Lyrica by 75mg a week and am currently on 75mg a night. Alongside I am now on 0.5mg of Requip. The Requip so far has not done anything and I have reverted back to my pre medication days of waking up every 45 minutes. I am not feeling any nausea from the Requip.

Is it acceptable to increase Requip faster and at what point would I know it isn't going to work for me?

James C.

Medical Reply

There is a bigger concern in that we normally do not like to treat PLMS. Even though we can document many leg kicks (although leg kicks with arousals or PLMA may be more important) it is not at all clear whether the PLMS cause any problem with next day sedation or disability.

If treatment of PLMS is contemplated, Lyrica would be a good choice as it usually does not cause next day sedation. However, at 300 mg, daytime symptoms are more likely so just lowering the dose may be helpful.

We usually suggest NOT to use dopamine agonists (Requip or Mirapex) as they may markedly reduce the PLMS but may eventually bring out RLS symptoms often in augmentation (a worsening of RLS from taking a dopamine drug).

If the sedating drugs helped your sleep (clonazepam, Lyrica) but Requip did not, it is more likely that the PLMS has nothing to do with your disordered sleep/daytime function and a shorter acting sleeping pill like Ambien may be a better choice to just treat you sleep disorder.

A Reply from James


Sent: Monday, November 16, 2015 3:10 AM
Subject: Re: Requip

I did have many PLM arousals on my sleep study. Lyrica did help me stay asleep at 225mg and higher but at any dosage which helped I had severe brain fog the next day.
If 0.5 mg is not effective should I consider require not suitable for me.

I will ask my sleep clinic about Ambien at my next appointment and discuss with them your point about augmentation.

James C.

Medical Reply

Although Requip at .5 mg is not a very high dose, I would still recommend staying away from dopamine agonists to treat PLMS.


Sent: Friday, November 20, 2015 5:12 AM
Subject: RLS

I just started taking chromium picolinate for diabetes, but it has brought back my RLS. The chromium picolinate is doing a great job with my diabetes so is there anything I can take or do to to alleviate the RLS. Also has this been known to happen before.

Cheryl

Medical Reply

I have not heard of chromium picolinate causing RLS to worsen before. However, you might have your iron and ferritin levels checked (if they are low, supplementing with iron could be helpful). Otherwise, starting treatment with Horizant or gabapentin might relieve your symptoms.


Sent: Saturday, November 21, 2015 10:21 AM
Subject: Augmentation and RLS

I am a 57 yr old woman who has had RLS for as long as l can remember. Due to not being able to tolerate the symptoms any longer, especially the sleep deprivation it was causing, l sought help from my GP. After ruling out other causes and establishing a family history, both my mum and brother have it, my GP prescribed carbidopa/levodopa 25/100 mg tablets. I take half a pill each night before bed. I realize that this medication is designed to treat Parkinson's, but was assured that it was effective for RLS in this small dose.

Recently l have been experiencing what l now know to be augmentation, as the RLS is presenting itself in my legs again. However, in addition to this l seem to have developed RLS symptoms in my arms, hands and chest. These symptoms are really severe, worse than my original leg problem and are blighting my life. I cannot sleep at night as the spasms and shooting nerve pain is incessant.
I have been referred to a Neurologist, which is reassuring, but my question is this, what can be done in the meantime, as l am in terrible discomfort and it's now unrelenting?

I have always been told that my iron levels are " normal" but in respect of RLS, What exactly would normal mean?

Lesley W.,
UK

Medical Reply

Unfortunately, you are correct about the Sinemet (carbidopa/levodopa which is a dopamine precursor drug used for PD) causing augmentation. Since the early to mid 1990s when it became very obvious that Sinemet causes augmentation in almost all patients who take it, we have strongly recommended that it should not be taken on a daily basis to treat RLS.

There is nothing that you can do on your own that will help the augmented RLS symptoms and they will continue to worsen while on Sinemet. A change to a dopamine agonist drugs like Requip or Mirapex will help considerably but augmentation is quite likely with these dopamine agonist drugs down the road (months or years). Most neurologists will suggest this change that will most likely be a temporary fix but will eventually present you with similar problems.

Although there are several different treatments for augmentation, most experts suggest getting off the dopamine drugs. 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.

Check out this link for up to date information on how to treat augmentation from a group of us experts that is available on the web:

http://irlssg.org/augmentation/

A Reply from Lesley

Sent: Saturday, November 21, 2015 2:26 PM
Subject: Re: Augmentation and RLS

Thank you so much for your speedy response. When it was recognized and confirmed that l had RLS l was very pleased that it had been diagnosed and my distress acknowledged. It was great to be prescribed a medication that would relive the symptoms that disturbed my life everyday. I had always thought that this was something that l needed to endure without cure.

At first the medication was successful and it was wonderful to be able to enjoy a social life, travel , even long haul, and sleep. My doctor did not warn me of the dangers of augmentation, perhaps he did not know? For months now l have been experiencing painful spasms, tingling, burning and numbness in my arms, torso, hands, and occasionally neck and head, with some mild cramping in my calf muscles. The symptoms are present during the day, but are extremely severe at night.

As you can imagine not knowing what was happening has caused me to worry that l had some major neurological problem, such as MS. My doctor did not recognize the symptoms of augmentation when l sought help from him and referred me to a Neurologist. She is convinced that the carbidopa/levodopa is the culprit. I am scheduled for an MRI scan next week and an EMG nerve conduction test. I am told that this is just to be sure that there is nothing more sinister going on. Have researched augmentation/rebounding and reading your very knowledgeable site, l think the Neurologist is probably right.
Within the last week the RLS has returned to my legs with a vengeance and the augmentation in my other limbs is now more extreme and unpleasant than the legs. I cannot sleep at all, night time is a torture. I am very concerned that my doctor did not know to warn me that this might happen, as evidence from research seems clear and compelling.

I guess l will just have to get through this as best l can whilst the Neurologist manages the situation and decides on a treatment plan. I will share with her your very helpful reply and thank you once again for your help.

Lesley

Medical Reply

Your story is very classic and common for Sinemet induced RLS augmentation. Typically, we do not get MRI scans or EMG tests as they are not at all helpful.

You may find that even your local neurologist may not be that familiar with how to treat augmentation and seeing an RLS specialist may be necessary (unfortunately, this is the case more often than not). However, the UK has few if any RLS specialists.

Let us know how you do.

A Reply from Lesley

Sent: Wednesday, December 16, 2015 3:59 PM
Subject: Re: Augmentation and RLS

I have now had my MRI tests and the EMG nerve conduction test. The results of both were normal and that now seems to confirm that my symptoms are the result of augmentation from the Co-Careldolpa. The Neurologist has advised me to see my GP to discuss how to manage changing to another drug, she has suggested Ropinirole.

To my surprise it appears that the Neurologist is saying that my GP can take things forward, but my concern is that the GP does not have the in depth knowledge necessary to treat my RLS effectively and that switching to Ropinirole will cause augmentation again at some later date. Do you think l should ask for a referral to an RLS specialist, if l can find one.

Lesley W.

Medical Reply

Changing to ropinirole (pramipexole may be a little better) will help the augmentation problem from Sinemet. However, you are correct that you will just be delaying the next problem which is augmentation from ropinirole. I am also surprised that the neurologist did not manage the transition as they should know much more about that process than a GP (the neurologist may actually not know what to do himself). That is certainly not how we do it here.

You may not find a ďrealĒ RLS specialist but if you search, you should find a neurologist who is more experienced and comfortable treating RLS and who should be willing to transition you from Sinemet to whatever other drug works.

A Reply from Lesley

Sent: Friday, December 18, 2015 3:13 PM
Subject: Re: Augmentation and RLS

Thank you for your reply, can you advise how long it should take for the augmentation symptoms to stop once l stop taking the Co-Careldolpa? And in your experience will my RLS symptoms return to their original state? I am very concerned that the discomfort which is now apparent in my arms, hands and feet will not subside.

Lesley W.

Medical Reply

Typically, it takes 10 days (give or take a few) for the RLS symptoms to return to their previous state prior to taking the dopamine drug.

However, if you substitute ropinirole or pramipexole, you will likely feel better within a few days or less. However, you then face the issue of augmentation down the road.

A Reply from Lesley

Sent: Saturday, December 19, 2015 1:41 PM
Subject: Re: Augmentation and RLS

Thank you for your response, l apologise for asking so many questions, but l am struggling to find someone in the UK that has the ability to answer my questions with the speed and authority that you do.
I stopped taking the Co-Caredolpa, one half tablet of 25/100 mg, on the 23rd of November. I did not have any medical intervention and simply managed the considerable discomfort myself using over the counter painkillers. For the first two weeks my symptoms were very severe and painful, but have gradually eased to a level that is more bearable in comparison.

However, the RLS symptoms in my legs, arms, feet and hands have changed in their presentation. I now have a fairly constant burning/aching/tingling sensation which does not abate. I also have acute sharp stabbing pain, that comes and goes, in my left hip and sometimes left knee and shin bone. I do not know if there is any relation between the two.

You say that on average it takes 10 days or so to revert to a previous state, therefore l am concerned that my symptoms whilst milder, show no signs of cessation in my arms, hands and feet.
My legs ache particularly in the calf muscles almost constantly, at night they get much worse. It seems that since l stopped the Co-Caredolpa l have no periods without RLS symptoms, and those caused by augmentation in my extremities have not stopped either. Is this common?
Many thanks

Lesley W.

Medical Reply

Most patients find that after the 10-14 days that their RLS symptoms are much improved (as noted before to pre-dopamine drug levels) but for some patients this may be different. If you had been on the drug for many years, it is possible that the RLS worsened naturally and may have been part of the augmentation presentation (and then of course, RLS symptoms cannot return to the old baseline since there is now a new baseline).

A small percentage of patients find that they suffer persistent worsening of their RLS symptoms that improve only mildly when the dopamine drug is stopped. We do not know why some patients have these persistently worsened symptoms but quite a few patients experience this problem (even though it is a small percentage of patients that stop a dopamine drug).

Some of your symptoms may not be due to RLS but the only way to tell for sure would be to start ropinirole or pramipexole and see if they go away. In the UK, it is unlikely that you will get many other choices except for gabapentin or Lyrica (much better but may be more expensive). I would suggest a trial of gabapentin or Lyrica first and if that is unsuccessful at reasonable doses, then your only alternatives in the UK may be ropinirole or pramipexole.


Sent: Friday, November 20, 2015 8:51 PM
Subject: RLS help please

I have suffered from RLS for most of my 41 years, remembering back to when I was a young teenager and having the awful sensation of needing to move my legs at night when trying to sleep (I also get the sensation in my arms from time to time). I, unfortunately, come from a long line of RLS sufferers, itís so prominent on my fatherís side that about 90% of us suffer from RLS, ranging from mildly to severe, with my father being the most severe. Our doctor has made comment that he is the worst case he has ever seen, and unfortunately for me I seem to be following in his footsteps. It used to be a here and there, every now and then thing for me but after age 35 it got worse and worse and continues to do so as I age. There is no time day or night when, as soon as sleepiness sets in, my legs donít begin to bother me and I must get up, I canít even sit down and enjoy watching TV or a movie anymore, unless of course Iím wide awake. No napping allowed for me these days. It is very frustrating and there are times as Iím doing my laps around my house I just cry out of aggravation.

I have tried just about everything on the market for RLS. Permax and Mirapex both made me pass out and violently vomit all night long, so needless to say neither my doctor nor I am willing to even try Requip as it will most likely have the same side effects for me. Plus my father was on it for years and experienced augmentation badly; heís no longer taking it. Gabapentin seemed to do a whole lot of nothing for me and Lyrica seemed to make me worse, especially at night when at work.

To make treating this even more of a challenge, I am a night shift nurse and work at least 3 7p-7a shifts per week. Over the past couple years my RLS symptoms have starting showing up while at work, as soon as I start to get sleepy, and it gets so bad I have to get up and do laps around the hospital or stand up and walk in place to do my charting, I canít sit for any length of time, itís extremely frustrating.

I have been on Percocet 5/325 for my RLS for about 4 Ĺ years now, they work well and I get quick relief, the problem is they donít always last long. I take 2 to 4 pills (only 2 at a time though) a day because of my work schedule, I need to take them after work in the morning to sleep, then again at night, if I happen to be off that night, to sleep. Over the years Iíve gone from only needing one 5mg to do the job to needing 2 as their effectiveness has worn off or my RLS has gotten worse. Either way, I now take an average of 4 per day. The problem I am finding is that 3-4 hours after I take them they wear off and my legs wake me up and I am needing yet another dose (I try to only take one on those occasions) to quiet them so I can get back to sleep, this isnít always the case but seems to be happening more frequently than it used to. Then there are those nights while at work when I have to take one to get some relief or I will lose my mind. My doctor only gives me an allowance of 90 per month and I seem to run out a few days to a week before my next refill is allowed.

I recently decided to try Tramadol, to try something different and because the half-life of Tramadol is longer I thought they may work longer for me. They certainly do relieve the RLS symptoms but they take about 2 hours to kick in, and they make me a complete insomniac. I am very restless and cannot sleep at all, so that completely defeats the purpose. In the morning getting off of work, I donít have 2 hours to wait for them to kick in, especially if I have to work again that night, I only average 5-6 hours of sleep on the days I work back to back as it is. So I donít think, with my situation and work schedule the Tramadol is a very good option for me. Though I think they would be good for me to take while at work to get me through the 12 hours of work and keep my RLS at bay.

After reading many of your posts, I see you donít recommend Percocet for treatment of RLS due to the Tylenol involved and the long term effects it can have. But I need something with a quick action. My doctor is pretty open to suggestion and very willing to help, although I donít think heíd be willing to prescribe the real strong narcotics you suggest on here, like OxyContin or methadone, and I donít know that I am comfortable taking those (maybe itís just the addiction associated with those meds that scares him and me). So do you think it would be reasonable to request him to prescribe the Oxycodone 10mg, without Tylenol, at 60 per month, which would give me a two per day allowance. And then the Tramadol, 30 per month, to keep my symptoms at bay while at work or just wanting to sit and relax watch TV or a movie without having to get up and pace the floors.

Please let me know what you think my best options would be with the severity of my RLS and my work schedule taken into consideration. Is there something else on the market that I could take daily that is not a narcotic that might just keep my RLS symptoms from bothering me all the time, something that doesnít have the terrible side effects of so many of them and would not cause drowsiness as I canít be out of it when at work. I have an appt with my doctor in a few weeks to discuss my treatment and would love to be able to come to him with your suggestions.

Thank you for taking the time to read this, I think it is really nice of you to do this for people on your own time, I know I appreciate it greatly and I am really hopeful that you can help me find some peace and relief, before I go completely insane.

Julie S.

Medical Reply

You are quite correct about the concerns of taking acetaminophen (Tylenol) with the Percocet as it provides no benefit and thus only presents a risk. However, you are wrong about the increased addiction potential of OxyContin or methadone. The OxyContin is merely a longer acting (8-12 hours compared to 4-6 hours for oxycodone) oxycodone and the risk of addiction is merely related to the total dose, not the duration of action. Therefore, there is no difference between taking regular oxycodone 10 mg compared to OxyContin 10 mg for addiction although the OxyContin dose will last longer. Methadone is about 25% or so more potent than oxycodone and lasts longer (8-10 hours per dose) but as long as you are using equipotent doses, the risk of addiction is the same.

Using a longer acting medication may smooth out your RLS control and actually allow you to use less medication. It is typically easier to prevent RLS symptoms than trying to relieve them once established (and needs less medication to prevent them).

Additionally, you could add Horizant even though you have failed gabapentin since Horizant is a better delivery system for getting gabapentin into the body (which can be very poor with regular gabapentin). You should have your serum ferritin levels checked and if low, iron supplementation (sometimes intravenously) can be very beneficial.

With proper care, most all RLS patients can get excellent relief.

A Reply from Julie

Sent: Saturday, November 21, 2015 11:15 AM
Subject: Re: RLS help please

Thank you for your quick response. I do believe I've read that Horizant isn't for people needing to stay awake at night and sleep during the day, that's why we never tried that one. I'm always reading up on the newest medications for RLS in hopes of finding something that I can take that will work for me with my work schedule as it is.

Do you agree that the Tramadol would be a good option for me to take to keep the symptoms from showing up while at work, or in the evenings when I want to just sit and watch a movie or TV, but to not take them when I need to sleep, since they don't let me? And if I'm asking my doctor to prescribe me OxyContin, what dose should I suggest and how many per day would I need, keeping in mind again I sometimes sleep twice in a 24 hr period due to my work schedule.

Julie S.

Medical Reply

As you already know, shift work is very difficult for RLS patients (and anyone with insomnia). Horizant should not be taken at dinner time if you are going to work during the night. However, you could shift the dose so that you take it about 5-7 hours before going to bed (as long as it does not make you too sleepy to drive home).

OxyContin should be started at its lowest dose of 10 mg. If it makes you sleepy, you have to make sure that you take it at least 8-12 hours before needing to be alert. You should try to keep the total daily oxycodone dose under 30 mg if possible (to avoid tolerance/dependence). Methadone often works better (not sure exactly why) and you may be able to get by with lower doses (and it may or may not cause much drowsiness).

It is very reasonable to use tramadol during the daytime to control RLS symptoms in order to stay alert and at least 4-6 hours before bedtime (I do that often for my patients).


Sent: Monday, November 30, 2015 10:13 AM
Subject: RLS

I have had RLS on and off for about 3 years, mostly off. I found that Ultram took care of most issues.

However, starting last Monday, I began a bout with RLS that even Ultram couldn't touch. It has kept me up 4 nights now in a row. I'm desperate and feeling really despaired about the situation. I was hoping you could give me some guidance on any doctors that specialize in RLS?

My current doctor seems to dismiss the urgency of this condition and cannot find anything in the area that will take me in right away - I need relief! Any help would be greatly appreciated.

Dan D.

Medical Reply

For the short term, a stronger opioid like oxycodone (without Tylenol) might work very well. For the longer term, Horizant is a very good choice. Most specialists will want to add Mirapex or Requip which will help initially but tend to cause worsening of RLS with time.


Sent: Wednesday, December 02, 2015 2:20 PM
Subject: RLS and pregnancy

I'm 39 y/o and 23 weeks pregnant and having the worst Restless Legs of my life. I was diagnosed before pregnancy and was taking Mirapex .25mg when unable to sleep. I am also on Prozac, which I know exacerbates RLS but is not an option to go off right now. I think my OB is reluctant to prescribe any meds at this time, even though we have discussed Sinemet, cabergoline, and opiates you mention.

Even if I want to sleep, I can't because my legs keep me up. Yesterday I took an hour long walk followed by a warm bath two hours later and ended up taking Mirapex at 3am because legs were still crazy. I will continue with the walk and bedtime routine. Am trying to avoid sugar and caffeine as well. I've tried to avoid taking Mirapex but have resorted to taking it this week 3 times out of desperation. I had taken it very sporadically during my pregnancy up until now, maybe twice a month. But now it's chronic and intolerable

Patricia P.

Medical Reply

There are several treatments suggested for pregnant women but Mirapex is not one of them.

Sinemet for RLS symptoms and clonazepam for insomnia are now the first line choices. If they fail, then opioids are appropriate.

There is a recent Consensus Practice Guideline article  that discusses the options at length.

A Reply from Patricia

Sent: Thursday, December 03, 2015 11:40 AM
Subject: Re: RLS and pregnancy

Per the Consensus guideline article, a more effective and safe non-pharmacologic approach was pneumatic compression devices. There are so many brands and types of machines on the market. Can you offer a recommendation? Additionally, are compression stockings recommended?

Patricia P.

Medical Reply

Although there are a couple of articles demonstrating improvement of RLS symptoms with the compression device, other studies have not confirmed it benefit (and I personally doubt its effectiveness) and it is quite expensive.

I suggest looking into the Relaxis pad (which is also expensive) but has been shown to be effective.












DISCLAIMER

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


If you have questions or wish to describe your symptoms and treatments, send us email by clicking below.

E-MAIL

To receive a response to your email letter, please use complete sentences with correct spelling (use your spellchecker), punctuation and grammar. Avoid abbreviations (do not use Dr or doc instead of doctor or yrs instead of years), incomplete words and do not use ALL CAPS or no capitals (like i instead of I or for the first word of a sentence). Email letters that do not follow these rules will not be read and will not receive a response.

 


   Click to go to the RLS HomepageRLS Treatment Page


Source: Southern California Restless Legs Support Group, Patient Letters and Medical Answers Section, Page 112.
http://www.rlshelp.org/rlscomp112.htm
This web site was last modified on Thursday, January 07, 2016.
Cartoon above was created and drawn by Robert Van Den Berghe.
All material on this web site is Copyright © by the Southern California RLS Support Group, 2014.

 top.gif (438 bytes)  Top of Page