Patient letters on RLS symptoms and remedies- Page 119

Sent: Tuesday, August 7, 2018 2:37 PM
Subject: Gabapentin and RLS

I augmented on Mirapex about 1 1/2 years ago. During the withdrawal my neurologist started me on Gabapentin 300mg every evening. As soon as I started the Gabapentin, I became depressed; had anxiety and nausea, shaking, memory loss, lack of coordination. I also tried Methadone, Oxycodone, Dilaudid and Tramadol. On each of the opioids I had severe nausea, weakness and inability to eat [I lost 30 pounds]. So I stopped the opioids. After stopping the opioids, I was started on Rotigotine 1mg patch. The nausea and depression has continued even with taking Wellbutrin XL.

In light of the recent JAMA article linking Gabapentin with depression, I have tapered off Gabapentin (off 5 weeks now). I tried the opioids again and had severe nausea. So I had to stop. My RLS has become much, much worse. I also tried the Relaxis pad, but it did not work. If I cannot take Gabapentin and opioids, do I have any recourse?

Sherry G.

A Medical Reply

I would definitely agree that you should stay away from gabapentin (and definitely Horizant and most likely Lyrica) due to the depression side effect issue. The Relaxis pad might be helpful but not under circumstances where you are off Mirapex, experiencing severe RLS and not taking another drug to help mute it.

The opioids may still be worth a try but perhaps at lower doses in addition to taking Zofran to treat the nausea. You might be able to keep the dose of the opioid lower by adding small amounts of Neupro (1-2 mg and 3 mg only if really necessary).

Intravenous iron might still be helpful but likely not covered by insurance with a high ferritin level.

Discuss this plan with your doctor.

Date: Thursday, July 12, 2018
Subject: Iron levels

To try and eliminate iron deficiency as a cause of my RLS my doctor ordered a Serum Ferritin test. It came back at 281. I am a 54 year old male. He said this indicates iron supplements won’t help. Is there other tests that should be completed to completely rule this out or is my Ferritin score adequate? Thank you!

Mark M.

A Medical Reply

The ferritin level is typically the most sensitive test for iron deficiency. The only issue is that it can be falsely raised by infections and other causes of inflammation (and may remain raised for a month or so even after the infection is over). As such, we usually get serum iron and iron saturation levels and if they correlate with the serum ferritin, then the serum ferritin is accurate. If not, then we repeat the serum ferritin again well after any inflammatory or infectious problem is over.

A Reply from Mark

Sent: Friday, August 17, 2018 9:55 PM
Subject: RE: gabapentin

In trying to get me off of 4 mg of extended release ropinirole, my doctor has had me reducing my dose by .5mg every week or so for the last month. I’m down to 2mg of extended release ropinirole. He has added in 300mg of gabapentin which I could increase to 600 mg if needed. I have come off of the ropinirole quite nicely but the gabapentin, which seemed to help a lot with sleep initially, is no longer helping as much with sleep and it seems to be making my legs worse towards the morning hours.

I went off of the gabapentin for a couple of days and I no longer had the morning RLS. Have you seen this with other patients and gabapentin? Any suggestions on what to do from here as I continue to reduce the ropinirole?

Mark M.

A Medical Reply

It is unusual for gabapentin to cause RLS symptoms and it is also surprising that they got better when stopping the gabapentin but anything is obviously possible.

However, the real issue is that decreasing the ropinirole further will likely exacerbate the RLS significantly. To get off the ropinirole, typically potent opioids are necessary.

Sent: Tuesday, July 10, 2018 2:03 AM
Subject: treatment options

I am a UK patient and my General Practitioner recently prescribed ropinirole as she thinks my symptoms may be RLS. She isn't sure, because although the sensations of pulling and prickling are those described by RLS patients, I actually wake up with these feelings in my thighs, they don't seem to get any worse in the evening, and it isn't substantially relieved by walking. this really started about a month ago and is pretty much present 24/7. I am booked in for an appointment with a neurologist on Thursday afternoon.

My question really is about medication options if RLS should be diagnosed. In my 20s (I am 56 now) I suffered greatly with intrusive thoughts and anxiety, and some associated depression, which eventually were controlled by cognitive therapy. I am reluctant to take dopamine agonists because of the risk of impulse control disorder, as I have had good mental health for many years now, helped by a mindfulness meditation practice. What would you suggest as the best course of treatment to discuss with my neurologist?

Alison L.

A Medical Reply

The risk of impulse disorders is quite real and can be very problematic (some patients gamble away hundreds of thousands of dollars). However, it is much less common (2-6% of patients who take dopamine agonists) compared to augmentation (a worsening of RLS which occurs with time from taking a dopamine agonist) which is 7-8% of patients per year.

For both those reasons, I prefer patients to avoid the short acting dopamine agonist drugs like Requip. I would suggest a better choice is gabapentin or Lyrica (Lyrica typically works more predictably). However, you do have to watch out for increased depression with this class of drugs (which only occur in a small percentage of patients).

However, it is not clear that you have RLS since RLS should improve significantly while walking. A short course of Requip (like a week or so) may help confirm or reject the diagnosis as 90% of patients respond initially to a dopamine agonist.

Sent: Tuesday, July 10, 2018 4:03 AM
Subject: iron injections

You have very kindly helped me to manage my RLS since 2016 when I discontinued pramipexole, having augmented. Earlier this year you sent me the protocol for administering IV iron to pass on to my GP. I think iron would help me as I have responded well to raising my serum ferritin using oral iron but cannot get them to beyond about 60. However, my GP has informed me that he has not been able to source the product in Dublin, Ireland and has offered me an iron injection instead. Have you had any experience of injected iron? Would it be any use to boost my iron levels?

Alternatively, should I ask my GP to refer me to a consultant and, if so, would it be a hematologist who would most likely be able to give me an infusion?

Rachel A.

A Medical Reply

Your GP may not have access to intravenous iron as I suspect that in Dublin, this will be limited to hematologists and nephrologists (dialysis patients often get monthly iron infusions as standard therapy). I would recommend against intramuscular iron injections as the can be painful and causes changes in the skin (they are rarely used here in the USA). They will also not give you the level of iron needed to treat RLS.

Most patients find it very hard to get their serum ferritin levels above 60 as the body starts absorbing very little iron at that ferritin level (less than 2% or oral iron).

Attached is a recent consensus paper discussing the use of intravenous iron to treat RLS.

Sent: Saturday, July 28, 2018 9:12 AM
Subject: RLS Augmentation and withdrawal from Dopamine Agonists

I have been suffering from RLS since I was a child. It has gotten progressively worse with adulthood. I am now 51 years old. I had been on Requip for 10 years until last September when my doctor switched me to Neupro. At first Neupro did nothing for me. I was prescribed a 6mg patch. I would double up and use the patch from the previous day along with a new dose. I recently switched doctors. The new doctor prescribed 5 mg of methadone and instructed me to get off Neupro as soon as possible.

When I did, I suffered tremors and shakes anxiety and did not sleep. I researched this and found out how difficult it is to withdraw from Dopamine Agonists. I’m scared. The two nights I spent cold turkey from Neupro were the worst days of my life. I’ve been out of work since May 8th. I’m a teacher and can’t wait to get back to my students this year but I’m so afraid that the withdrawal symptoms won’t allow me to.

I talked my doctor into a slower withdrawal of Neupro but he wants me off it completely by August 8th. How slowly should I be withdrawing from Neupro? Are there any medications that will help me during the withdrawal period? Why is it so difficult to withdraw from dopamine agonists ?

Tom H.

A Medical Reply

There are several issues with your RLS treatment. Your dose of Neupro was quite high (double the recommended RLS dose) and augmentation is very likely. The symptoms that you are experiencing when stopping the Neupro could be DAWS (Dopamine Agonist Withdrawal Syndrome) which has many of the features that you described. However, it is also possible that when stopping the Neupro, your RLS was not well enough controlled and a higher dose of methadone may have gotten you through.

Either way, there is no reason not to try tapering the high dose of Neupro slowly. There is also no reason that the taper off Neupro could be much slower. Typically, going slower is no issue (except that it takes longer).

It is very likely that with a slow taper off Neupro and adding in adequate amounts of methadone (for the short term, doses as high as 20-30 mg per day are not unusual) have an excellent chance of successfully getting you off the Neupro and treating your RLS. It often takes a few weeks off the Neupro (or any dopamine agonists) to have the RLS calm down and become much easier to treat.

A Reply from Tom

Sent: Saturday, July 28, 2018 8:32 PM
Subject: Re: RLS Augmentation and withdrawal from Dopamine Agonists

I’m going to try to do the slow taper and I pray to God that I’m not experiencing DAWS. I read about it and it’s frightening.

I was just approved for a NY State Medical Marijuana card. Do you think that this may help my treatment or would it potentially get in the way? I’ve never taken any recreational drugs in my life. Methadone is scary and marijuana scares me a bit too. But anything that helps these withdrawal symptoms and can ease the symptoms of RLS seems to me to be worth it.

On August 14th I’m supposed to go to Ireland to see family. I’m worried about traveling if I have DAWS. I want to go but I’m not sure what I would do if I ever had an major withdrawal symptoms on a six hour plane ride.

Again, thank you for this amazing resource and for responding to my email. It’s comforting to know that there are people out there that have been where I am and have made it through the process. It’s very comforting to know that a Doctor like yourself cares enough to take the time to answer emails.

Tom H.

A Medical Reply

Marijuana does help RLS (but typically only when inhaled). How it may help other issues (like DAWS) is completely unknown. It may not be the best idea to put it in the mix of your treatment until you have problems with the more conventional treatments.

Although you should always be concerned about using opioids, doing so following the guidelines that we have set up usually makes this a very safe and effective treatment.

Sent: Monday, July 30, 2018 10:31 PM
Subject: Older patient with RLS

My mother is nearing 90, in pretty good health for that age. She’s been on Pramipexole for a little while and it has helped, but within the last two weeks the RLS has become severe, even during the day, for hours. Augmentation, obviously. She takes a low daily dose of Norco for back fractures (osteoporosis) as well as BP meds, thyroid meds, and a few others.

We called her doctor (Internal Medicine) to ask if we could change her medicine since it was likely causing problems, but the only response I got was a call back from the nurse, telling me that the doctor said there was nothing he could do, since any other medicine he would give her would do the same thing. Now what can we do? How do I even find a doctor that is interested enough to research RLS just the little bit that I have, because I know there are other drugs out there?

I’m guessing that she should be weaned off the Pramipexole but wouldn’t she need a stronger pain medicine? Percocet (taken for a previous back fracture) made her so loopy that it was scary, so does that mean Oxycodone is out of the question? I worry, too, that anything that makes her dizzy could cause a fall. We’ve tried the easy, at-home things, like extra magnesium, and she walks in her house for hours, and massages the calves of her legs and her feet, and we’ll also have her iron checked. But I really just don’t know what to do. Do you think a neurologist would be more helpful?

Diane C.

A Medical Reply

A neurologist or sleep specialist would be much better but even most of those specialists would likely have difficulty helping your mother.

You might want to take her to one of the RLS Quality Centers where there are real RLS experts who can give her the best possible treatment. These centers can be found on the RLS Foundation's website (www.rls.org).

A Reply from Diane

Sent: Wednesday, August 1, 2018 11:11 AM
Subject: Re: Older patient with RLS

Took my mother to see a neurologist today, and although I asked if we could get her off the Pramipexole, this doctor simply prescribed Requip. Is that not closely related? I sure wish we lived closer to one of the RLS Quality Centers, but we are in south Mississippi, many hours from either of the closest two. Meanwhile, thanks so much for your helpful advice.

Diane C.

A Medical Reply

Requip is very similar to pramipexole (like swapping one poison for another). Definitely, not recommended.

Unfortunately, my prediction about seeing the neurologist was totally correct.

Sent: Tuesday, July 31, 2018 7:52 AM
Subject: Tramadol

Just a few words if you are not to busy to reply, but I have been weaning of the patch, because I think I was getting, (augmentation) to help with the pain I was taking Tramadol but this seems to have stopped working for me know. I was just wondering if there was any other med I could take apart from codeine, I know codeine makes you constipated.

Claire T.

A Medical Reply

The issue is that when you wean off a dopamine agonist, the RLS returns with a vengeance for at least 1-3 weeks after stopping it (and definitely while reducing it). The tramadol which worked well with the Neupro is now being asked to do too much. It might work better after a few weeks totally off the Neupro patch.

For now, only potent opioids (not codeine) like oxycodone, methadone, etc. would be helpful. The constipation can most often be managed with stool softeners, increased fiber (like a high fiber cereal) and if needed, Miralax. There are some new medications that also help the opioid induced constipation.

A Reply from Claire

Sent: Wednesday, August 1, 2018 4:47 AM
Subject: Re: Tramadol

thanks for your reply its just that the tramadol as stopped working can you recommend a strong painkiller that will help with the pain,

Claire T.

A Medical Reply

We typically prescribe methadone or oxycodone.

Sent: Sunday, August 26, 2018 3:12 PM
Subject: My Personal Care Physician Refuses To Prescribe Opioids For RLS

I am a 72-year-old male who is increasingly suffering from refractory RLS. Recently the horrible twitching has kept me rocking and pacing to the point where I am lucky to get even an hour or two of sleep per night. The list of palliatives and nostrums I have tried number in the dozens but have availed me little to not at all, except for powdered Kratom, which I look upon as lifesaving.

My Personal Care Physician is less than expert as regards RLS, and only offers me dopamine agonists such as Pramipexole. Three times I have embarked upon its use: the first time with no results (admittedly I only used it for five days) and then I found Kratom which was so effective that I was happy to quit using the Pramipexole, having read more and more about the hellish effects of dopamine agonist augmentation.

However, after nearly two years of gradually creeping doses of the powdered Kratom (from roughly 4 gram doses not quite every day, to my current 8 gram doses times 4 per day), it has become apparent to me that I’m headed for big trouble in that my receptors seem to need to be “reset” as no longer do I get more than a modicum of relief in the form of symptom reduction or ability to sleep. So, about two weeks ago, for a second time I administered myself the (.125 mg) Pramipexole pills (3 pills over 2 hours), but reacted extremely poorly in that I experienced suicidal ideation and extreme depression (neither of which had EVER happened to me before in my entire life!), but I calmed down after administering a couple more doses of Kratom over the next few hours.

This month my Personal Care Physician (PCP) has persuaded me to try the Pramipexole again, but after just one pill I began experiencing the aforementioned extreme reaction and thus I fear ever taking it again. I spend hours each week on the internet researching possible remedies and have come to the conclusion, via this website and a similar one called HealthUnlocked (in the United Kingdom), that I am a perfect candidate for methadone treatment, or at least for the use of some sort of opioid therapy. I have never abused an opioid prescription and have responded well to their use when prescribed them (e. g. dental work, hernia operation). But I live in Las Vegas and she (my PCP) says that she fears the Nevada authorities might threaten her livelihood because of the current opioid panic, so she adamantly refuses to prescribe them “off label”.

Could I travel to Downey to see whether Dr. Buchfuhrer would be willing to prescribe methadone to me? Would such a prescription be valid at a pharmacy here in Las Vegas? Is it possible that Dr. Buchfuhrer knows and would recommend my case to a sympathetic physician here in Las Vegas? If worse comes to worst, I would be willing to attempt to move to Southern California, so fearful am I that this RLS has become utterly ruinous to my quality of life!

James D.

A Medical Reply

You clearly do not want to try pramipexole again (not sure why you would even retry it after your initial poor reaction). It is possible that the Neupro patch might work and a short trial might be reasonable even though it is also a dopamine agonist drug (but releases very slowly so may not cause similar side effects).

Another option is to add gabapentin, Horizant or Lyrica if you have not already tried them.

Although we are all concerned about prescribing opioids in the opioid epidemic climate, any doctor should be able to easily prescribe opioids without concern if they do so correctly.

Sent: Tuesday, August 28, 2018 9:02 AM
Subject: Treatment Advice for Severe RLS

I am 76 year old female with severe RLS since early teens. I am sensitive to many medications and augmented on pamiprexole after only three months. Gabapentin and pregabalin were not tolerated and I ended up taking 30 mg. codeine nightly for the past few years. This worked reasonably well for quite a time but in the last 2 - 3 years RLS has been very severe and occurs anytime from lunchtime onwards when sitting only a short time. The RLS spread to arms and the leg movements during night became very jerky and uncontrolled.

Six weeks ago I talked to my doctor and persuaded him to let me try oxycodone slow release (Longtech) 5 mg. each evening. For the first month this worked well and I managed some sleep. Now it is not working any longer and I would very much appreciate your advice on perhaps increasing treatment before talking again to my doctor. His knowledge of RLS is scant but I feel he is open to suggestion.

I am taking no other treatment apart from 75 mg. Aspirin daily which has been very successful is preventing migraine with aura.

BARBARA K.

A Medical Reply

Oxycodone at 5 mg is not a very high dose. Most patients need 10-15 mg (or more) for relief of severe RLS symptoms. It could be that your dose was just borderline and a small increase may work well.

In addition, you should have your iron and ferritin levels checked and if not high enough (we like much higher values than the normal from your local lab), then iron supplementation can be quite helpful (and if low, might also explain why your RLS symptoms are worse).

Sent: Saturday, September 1, 2018 5:37 AM
Subject: Iron Infusions for the treatment of RLS

As a Restless Leg Syndrome sufferer for many years I have read that iron infusions can be an effective treatment for the symptoms of this disease. The last time I had my ferritin level tested it was 68, after using iron supplements to raise it up from around 22. My symptoms still persist nightly.
I would like to discuss the option of an infusion with my doctor.

However, I believe that here in the United Kingdom this procedure is not commonly used in the treatment of this disease. As an expert in this field, I am wondering what your views are on this and whether you have successfully treated patients with infusions. Also, what you consider to be the the optimum ferritin level for a person with this condition?

Anne B.

A Medical Reply

About 60% of patients respond to iron infusion therapy for RLS. We generally like to see the ferritin level below 50-75 but we have seen many patients with ferritin levels above 150 (and even above 200) respond to IV iron therapy. It depends more on how much iron we get into the brain and the serum (blood) iron do not always reflect the amount of iron in the brain.

Here is the USA, IV iron therapy is being used more and more but mostly by RLS specialists. However, there is a recently published medical article that discusses when and how to give IV iron. There are also only a few IV iron preparations that help RLS so they must be used for RLS patients in order to relieve the RLS symptoms.

Sent: Thursday, September 6, 2018 8:35 PM
Subject: Side Effects with Long Term Use of Methadone

I’m 71 years old and have had RLS since 2002. I’ve been taking methadone for my refractory RLS since December 2014, after having augmentation with Mirapex at 10 years and then Tramadol at 2 years. Both worked extremely well until augmentation. I also tried Horizant with little success. My neurologist has tested by iron levels and they are normal.

I started methadone at 2.5 mg for a few weeks, then increased to 5 mg for 2 years, and have now been on 7.5 mg for the last 2 years with very little symptoms. The methadone has been very successful in keeping my RLS symptoms under control, however, a few months ago I started experiencing an uncomfortable feeling in my head, usually starting 1-2 hours after taking my methadone. I sometimes feel these symptoms during the day, but they are not as significant as in the evening after taking my methadone.

I would describe the feeling as a mild headache accompanied by a foggy sensation, perhaps like a stupor, sometimes hard to focus, feeling dizziness and lightheadedness and somewhat wobbly. I did not have these side effects for the first 3 ½ years while taking methadone. I haven’t introduced any new medication, having been on simvastatin and low dose aspirin for years. It seems to me that if you’re going to have side effects you most likely experience them when starting a medication or increasing dosage.

Have you ever come across something like this with methadone, experiencing side effects after 3 or 4 years? I’m not sure what to do? I need the methadone but these side effects are beginning to affect the quality of my life. I guess one of my major concerns is if the long term use (years) could be causing the side effects and also if the long term use of methadone could have any adverse effects on the brain, i.e. memory, and/or depression. Any insight you could provide would be greatly appreciated. Thank you.

Mike B.

A Medical Reply

You are correct that most often side effects with any medication (including opioids like methadone) tend to occur early on (most often with starting the medication) rather than after a few years. The exception is when other drugs are added that may interact (slow the metabolism or enhance the effect of the drug). It does not sound like that is an issue in your case.

It could be that as you get older, you are metabolizing the methadone more slowly and it might be accumulating causing those side effects. In that case, changing to a shorter acting opioid like oxycodone or hydromorphone might be helpful.

Even though your iron levels are normal according to your neurologist, we know that much higher levels (especially of ferritin) are needed for RLS patients. You might be a candidate for iron therapy depending upon your current iron and ferritin levels (using RLS standards, not your typical lab normal values).

A Reply from Mike B.

Sent: Monday, September 10, 2018 8:38 AM
Subject: Re: Side Effects with Long Term Use of Methadone

A quick follow up to my previous email and your response. You indicated that as I grow older I may be metabolizing the methadone more slowly, therefore causing it to accumulate more and possibly causing the pronounced side effects. What impact would Metamucil have on this? I take a heaping tablespoon of Metamucil every day for constipation about 2-3 hours prior to taking my methadone.

Would discontinuing the Metamucil possibly help?

Mike B.

A Medical Reply

Metamucil should have no effect on methadone metabolism or how it works on your body.

Sent: Sunday, September 16, 2018 10:10 AM
Subject: RLS deterioration

You have very kindly offered me advice in the past. I have severe RLS and Small Fiber Neuropathy. I currently take 175 mg of Tramulief (tramadol), 2800 mg of Gabapentin and use a 2mg Neupro patch. My neurologist wants me to slowly (25 mg a week) stop Tramulief and increase the Gabapentin to 3600 mg. My legs had been relatively ok but at night the kicking and movement is occurring again. My question is where do I go from here?

Martin C.

A Medical Reply

Most doctors (including neurologists) are often not aware of the limitations of gabapentin absorption. Very few patients can absorb more than 600-900 mg per dose (if that) so adding more medication adds very little extra medication or therapeutic effect. That is why Horizant was developed to overcome the gabapentin absorption issue.

A change to Lyrica may be helpful as that drug gets very well absorbed into the body even at the highest level. Traulief (tramadol) may help RLS but is not as potent as the real opioids like oxycodone or methadone. If the change to Lyrica or Horizant is not helpful, then changing to a potent opioid might be very helpful (if you can get your doctor to prescribe those drugs).

Sent: Wednesday, October 24, 2018 1:27 AM
Subject: RLS

I have had RLS since grade school until I got to my 30's. Now I take 2 5mg of Diazepam either both at bedtime or one at bedtime and one in the morning. I had gotten a new doctor who apparently knows nothing about RLS. He didn't want me on Diazepam so I weaned off of it and he prescribed 1mg of Mirapex 2 times a day well after no Diazepam the Mirapex wasn't working so I myself went back on the Diazepam and am taking the original 0.125 mg of Mirapex too.

I didn't know about no caffeine until I reed this website Thank you because yesterday morning I had a large cup of coffee and within 20 min my legs started up again. I thought oh boy here we go again. My RLS is very severe. It's like having an anxiety attack through my whole body. It is exhausting... I will be getting a new Dr. as soon as I get either Medicaid Disability or financial assistance through one the hospitals. Until then I just pray that I can get the last refill on the Diazepam.

My question is is there any other RLS medicine other than Mirapex or Requip that I could ask the Dr about? The new Dr had me on 2mg of Mirapex and the Requip makes me so nauseous I end up in the hospital ER of dehydration. This the worst thing I have gone through and still am going through ever. Also how long does it take for the Diazepam to get built back up in my body?

I just got back on it 4 days ago and I'm having issues in the middle of the night and in the day time. Before I got off the Diazepam I would only on occasion have RLS during the day which was still not fun to deal with. I would appreciate any and all the help I could get!!! Actually I'm up right now it's 3:25am and I can't go back to sleep. HELP!!!

Maggie M.

A Medical Reply

Valium (diazepam) typically does not help RLS symptoms (unless anxiety is a large component triggering RLS) but does help RLS patients fall asleep (just as it would help patients with back pain, headaches or other disorders that may prevent falling asleep). This drug is quite addictive so should be used very cautiously and should not be needed if your RLS is controlled directly.

Mirapex and Requip usually work very well initially but with time make the RLS worse (called augmentation). Mirapex should be started at .125 mg and should not exceed .5 mg per day (so your recent starting dose was way too high). Once you have been on high doses of Mirapex, your RLS may be much more difficult to control.

You should see a true RLS specialist to get more help as your current doctors do not seem to know that much about treating RLS (and especially difficult cases).

Sent: Wednesday, September 26, 2018 9:02 PM
Subject: Oxycodone and Total knee Replacement

I have written you several times in the past about dealing with my RLS in upstate NY where finding a RLS specialist has been very difficult, but based on your recommendations ,my GP has been great about dealing with my symptoms based on your research in the field.

Briefly I have run the gamut with Requip and Mirapex, both augmenting on me and I presently Use 10 mgs. of oxycodone at night only to deal with symptoms. Fortunately during the day, I have been able to cope with it , so I only rely on it at bedtime.

3 weeks ago, I had a total knee replacement, and I knew I would have to increase my oxycodone to deal with pain short term , but was concerned that once the pain had subsided, which it has, dropping back would create some withdrawal symptoms. Two nights ago I was able to drop back to my normal dose, but that brought on stomach cramps , and some disorientation, which I fear is from going from 30 mgs. to 10. Obviously I can’t be certain this is cause, but don’t know anything else to point fingers at.

Do you believe my body will reset itself shortly so that the 10 mgs. Will be sufficient to deal with my symptoms? Secondly I really do hate having to use an opiate for the rest of my life for RLS ,but will if research doesn’t ever find cure or better treatment. That said would it be worth trying to replace opiate with a test run of gabapentin enacarbil . I believe you had indicated it may not be strong enough, but I figure I have nothing to loose if I try it other than having to stay with oxycodone. I have read of a couple of studies ,one with 600 mgs. And one with 1200, but don’t know if this is taken all at once, like a certain time before bed, or spread over a period of time. Again I am only looking at dealing with symptoms at bedtime.

The biggest reason I would like to attempt a different medicine ,is I have to have my Right knee replaced in spring , and in all likelihood a hip or two down the road, so really would like to avoid the up and down dosage of opiate if it’s even possible.

John E.

A Medical Reply

I have had many patients increase their opioids post operatively then return to their previous dose without any issues. I would suspect that the short term increase of oxycodone from 10 mg to 30 mg should not be able to induce a withdrawal reaction (in fact, that should be pretty unlikely). However, anything is clearly possible when rare exceptions occur.

It is very unlikely that you could eliminate the oxycodone by switching over to Horizant. You might be able to decrease the dose of the oxycodone (to perhaps 5 mg or 7.5 mg) but in the long run, that may not be that helpful. I tend to add Horizant when I need to reduce the dose of the opioid (for side effects such as constipation, nausea or sedation) but otherwise I don’t like adding an extra drug to try to get a small reduction of the opioid dose when there are no other compelling issues (and I am not sure there is really one in your case).

Sent: Sunday, September 30, 2018 12:11 AM
Subject: Seeking help for mother's RLS

My mother aged 60 years is suffering from RLS past 36 years, which started during her pregnancy. She has borderline Diabetes mellitus . She is otherwise very active and positive strong willed person She started on medications 10 yrs back , having tried L dopa and ropinirole ( which caused augmentation after 3 years of usage).

We had to withdraw ropinirole and start with pregabalin. She underwent tremendous withdrawal symptoms but managed to come out of it. She presently has symptoms mainly at night times for a period of 2-3 hrs roughly between 11.30pm to 2.30 am.. during this time she cannot sleep. She manages to sleep beyond that for 4 hrs on an average. Day time sleep is v variable may or may not happen. We are worried bout her insomnia.

She presently take pregabalin 75 mg by 5 pm and 150 mg by 10 pm. What else can be done in her case? We are from Bangalore India and unfortunately it's not very commonly encountered condition here hence neurologists here are not well versed in handling these cases. I am a practicing Dermatologist myself, and I feel so helpless that m not able to do much about this. Ever since I came across this organization online m so happy and relieved to know I can seek help here.

Archhana G.

A Medical Reply

The first thought would be to increase the 10 pm dose of Lyrica slowly (by 75 mg each week to a maximum dose of 300 mg) if tolerated until symptoms are improved.

If that does not help, there may be other options.

Sent: Friday, October 5, 2018 8:20 AM
Subject: Advice needed re Iron Infusion and Trazodone

I am a 52 year old female who lives in the UK and has had RLS since I was a teenager. It runs in my family. It affects me mainly at bed time or an hour beforehand but was manageable for many years. However, ten years ago I was prescribed Pramipexole but began to suffer augmentation about two years ago which made my desk bound job very difficult in the afternoons, even distressing.

My Doctor referred me to a Neurologist who advised that I needed to triple/quadruple the pramipexole to relieve my RLS but I felt that I needed to come off the drug completely. I was told I could just stop (I was on 0.18mg per day), and wouldn’t need any help with withdrawal. I tapered the Pramipexole in December 2016 and suffered very bad withdrawal, followed by acute anxiety, which resulted in two months off work. Since then I have persuaded my Doctor to prescribe 50mg of slow release tramadol which I take in the evening together with one soluble solpadeine (8mg codeine/500mg paracetamol) and one co-codamol (30mg codeine/500mg paracetamol).

 I manage about 5 hours sleep on this regime but there are nights every so often when I get very little sleep and suffer very painful legs and/arms. I have tried a small dose of Lyrica and it did not agree with me. I am reluctant to increase the tramadol or try other opiates if I can manage without. I do not smoke or drink and try to eat a healthy diet.

I asked my Doctor about the possibility of an iron infusion but in the absence of any NICE (NHS) guidance, he has asked me if there is an evidence base for this type of treatment. If the iron infusion is not a possibility for me, would you recommend an increase in tramadol/another drug? I also take Sertraline (100 mg) and have asked to be switched to Trazodone (which anecdotally is RLS friendly?), however it is not normally prescribed here. Is there any evidence that Trazodone is better for RLS patients?

I would be very grateful any advice you can give me for my Doctor regarding the iron infusion and the merits of changing from sertraline to trazodone.

Catherine F.

A Medical Reply

As you obviously already know, your neurologist was wrong about increasing the pramipexole (would have markedly worsened the augmentation) and about no withdrawal getting off of it. Unfortunately, most doctors know very little about RLS and you probably already know much more than they do.

The tramadol is reasonable and you can go slowly up to a higher dose (up to 200 mg per day is reasonable) although tramadol may also cause augmentation (the only non-dopamine drug that causes augmentation). The issue with your codeine is that it contains paracetamol (acetaminophen or Tylenol here is the USA) which does not help RLS and thus in the long run increased the risk of liver or kidney damage. We only prescribe “pure’ opioids that do not contain paracetamol or ibuprofen for RLS. Even though you don’t want to try the more potent opioids, they actually work much better and with correct usage, addiction should be rare (attached is our recent article on Opioids for RLS).

We now have a consensus article for using iron for RLS that can be downloaded from PubMed for free.

Sent: Monday, October 29, 2018 2:06 PM
Subject: Treatment for my RLS:?

I am a seventy six year old lady. I suffered from RLS occasionally as a child but for the past twenty years I have it every night and it has increased in intensity as the years have rolled by.I was prescribed the Neupro patch about fifteen years ago but eventually suffered augmentation and had to wean myself off it with the help of Tramadol. I continued with the Tramadol all the time I was reducing the patch even though I was experiencing severe side effects (A very strong sensation of burning and freezing on my skin and severe constipation.)

When I had reduced the Neupro my doctor prescribed Gabapentin. This seemed to help a lot at first with the RLS and also helped me with the insomnia, which is something which has plagued me for half of my life. Unfortunately, now the good effects from the Gabapentin are wearing off and I have RLS every night and sometimes all night. Also the Gabapentin is now creating the same problem as with the opioids. I'm afraid of trying to stop the Gabapentin as I'm sure the RLS would be unbearable.

I have asked my doctor for an iron infusion but this has been refused because I am not anemic (my ferritin level is 66). He wants me to try and build up my ferritin level with oral iron. I have started iron bisglycinate in a patch and capsules but I know that this will take a long time before I even reach 100. My problem is how to survive these terrible nights and where I can go from here. I wondered if you have treated any of your patients with medical cannabis? I have read that this is about to become legal in the UK.


Diane S.

A Medical Reply

You do have some options to discuss with your doctor. Lyrica is another option which often works better than gabapentin (it is better absorbed) even though it works on the same receptors.

It is extremely hard to increase ferritin levels above 60 or so with oral iron. There are feedback loops in the body (with a chemical called hepcidin) that prevent oral absorption of iron at ferritin levels of 60 or more. However, even though you may benefit from intravenous iron, it may be difficult to persuade the insurers that it is warranted with a ferritin level as high as yours.

Sent: Monday, October 8, 2018 11:39 AM
Subject: RLS and Opiates

Has the Government made a decision as to whether RLS patients can get opiates? Most doctors won't give opiates for chronic pain either, except after surgery. Is this the new law from Washington? Are doctors threatened with losing their license, even for modest amounts of the pain pills? I just wonder exactly what is behind the hysteria concerning opiates. Thank you.

Irene O.

A Medical Reply

The government can’t restrict RLS patients from getting opioids. They can just make it harder with more hoops to jump through. The new law just requires doctors to do a drug report (check on which controlled drugs their patients are getting that requires a special web based search) for controlled drugs that are prescribed for over 5 days.

Unfortunately, many doctors are not that familiar with the opioids and over prescribe them which can lead to addiction. However, when prescribed reasonably by knowledgeable doctors, the opioids can be very safe and effective.

Sent: Wednesday, November 14, 2018 9:11 AM
Subject: Cymbalta

A pain doctor I saw said Cymbalta can help with pain. But since it is an anti-depressant, I figure it would make my RLS worse. I take now only 50 mg of Trazadone. If I take more than that, it makes my legs worse. Should I give Cymbalta a try? Is it a bad one for making RLS worse? If I did try it and RLS got worse and I quit taking it, would I go back to normal?

Irene O

A Medical Reply

Most RLS patients find that Cymbalta significantly worsens their RLS especially with higher doses. Some patients may not experience this worsening so it may be worth trying it (but the odds are against you). If you do try it and suffer worsening RLS, stopping it should make your RLS return back to baseline (where you were before taking it).

Sent: Tuesday, November 20, 2018 12:49 PM
Subject: RLS

I would value your expert opinion on ferritin iron levels please.

Over the years I have seen the figure of a 100 being a good level to aim for if you have RLS. However recently higher numbers up to 300 are commonly advised on RLS forums. What is your opinion on this?

My ferritin is 12.30 - am I likely to see an improvement of my RLS severity if I attempt to increase to 300? This will be difficult to reach as iron infusions are not readily available in the UK for RLS so I will be using oral iron.

Kim W.

A Medical Reply

The issue here is that we use the blood ferritin level as a marker for how much iron may be in the brain but they do not always correlate. So far, only 60% of patients improve with an iron infusion even if their ferritin gets close to 300. It may be that in the iron failures, that not enough iron gets into the brain. There is no universal magic number for how high a ferritin level is necessary and this varies considerably from patient to patient.

Oral iron is difficult since when ferritin levels get to around 50-60, the body produces more hepcidin which markedly decreases iron absorption. Very few patients can raise their iron/ferritin levels sufficiently via the oral route to improve their RLS symptoms.

Sent: Monday, December 10, 2018 3:59 AM
Subject: RLS and Mirapex

I am 57 years old with RLS. I was taking Requip, 2 mg at 12 pm and 2 mg at bedtime. It worked on the RLS but I was waking up at 4 am every morning. So my doctor switched me to Mirapex 3 days ago. I am taking .125 mg at 12pm and at bedtime. It has not been effective yet and I am taking 2 mg of Requip at bedtime with the Mirapex. Does it take a while for the Mirapex to kick in? Is it dangerous to be taking both meds?

Maria M.

A Medical Reply

There are significant concerns about your treatment.

The reason that the Mirapex does not work for you is that even though Mirapex is more potent than Requip, it typically takes at least .25 mg of Mirapex (and possibly even more) to equal Requip at 2 mg. Therefore, your RLS is not being adequately treated by too low a dose of Mirapex (which should work immediately if the dose is correct).

The bigger issue is that dopamine agonists like Mirapex and Requip cause worsening of RLS with time (after initially providing incredible benefit), called augmentation. As you increase the dose, your symptoms will temporarily improve but you will require more and more of the dopamine agonists to control your RLS. We do not recommend switching from one short acting dopamine agonist to another (such as from Requip to Mirapex).

Sent: Tuesday, December 18, 2018 7:45 AM
Subject: RLS Sufferer and Vitamin B1

First of all, this is just to reach out to those who may not know.

As an RLS sufferer for almost 50 years, and several family members having suffered as well, I would like to share with you that there is a simple fix that I wish I had known all these years. I wish I had known this in order to have helped my dad before he died. He had severe RLS suffering for most of his life and was on several drugs for it.

So far this has almost 100% relieved the symptoms for myself and my sister now for nearly 6 months.

I, by sheer accident, came across a YouTube video about the consequences and cause of lack of vitamin B1. We each take 500mg of vitamin B1 everyday. Using the water soluble kind is best since any of the vitamin not needed by the body will be excreted in urine.

It also has aided a great deal in relief in my sciatica.

I am simply writing to share with you that there is an alternative to Big Parma and doctors pushing drugs. I hope this can help in some way you and your group to at least do the research on this that is readily available on YouTube.

Jan C.

A Medical Reply

We will add your letter to our website so that other RLS patients may benefit from your experiences with Vitamin B1.

There are no current medical studies confirming (or refuting) the possible benefits of any Vitamin on RLS and I have not heard of many other RLS patients who have been helped by Vitamin B. We will see if others (after reading your letter) will write back and relate their own experiences.

Sent: Wednesday, December 19, 2018 7:33 AM
Subject: question about dipyridamole

I’m a 60 year old man with persistent involuntary leg movement that interfere with sleep. I read Dr. Sergi Ferre’s research articles about Adenosine playing a “pivotal role” in RLS. Do you have any experience with the medication dipyridamole that he mentions?

Erik

A Medical Reply

The adenosine connection to RLS and PLM is still quite new. How well dipyridamole works as this point is hard to say as only minimal studies have so far been done. We need more experience and patient trials before recommending dipyridamole. There may be other adenosine drugs that could possibly work even better in the near future.

Sent: Thursday, December 27, 2018 6:08 PM
Subject: spinal cord stimulator for restless legs syndrome

 I have had restless legs syndrome for many years, the refractory kind, and have tried a multitude of different medicines that have not been very helpful, at least one of which that is augmenting on me. I am under the care of a pain management doctor, have been for a couple years, trying to help me with my restless legs syndrome when my neurologist referred me to the pain doctor to prescribe pain medicines because the neurologist said there wasn't anything else he could do for me.

At my most recent appointment this morning, the pain management doctor mentioned the possibility of trying first an epidural steroid injection and then possibly a spinal cord stimulator. I do have back pain, but it is not too troublesome. But my restless legs syndrome is ruining my life.

This doctor says he has seen patients get relief of their restless legs syndrome after having the spinal cord stimulator implanted. Have you heard anything about this, if there have been any studies done on this? I trust your opinion and would really like to know your thoughts on this if you have the time to reply.

Lana E.

A Medical Reply

There is no evidence that an epidural steroid injection will have any beneficial effect on your RLS and since you don’t have significant back pain that would be a very poor idea. The same is true for a spinal cord stimulator. These are not acceptable treatments for RLS but may help occasional patients just as sleeping with soap in your bed sheets helps a few patients (likely due to the placebo response).

Sent: Wednesday, January 2, 2019 3:17 PM
Subject: PLMD, RLS and Celiac

I am a 39 year-old male from the UK, and I feel like I'm nearing my wits' end in trying to get on top of my PLMD symptoms.

Going back 10 years, I had no health issues at all. I slept long and well, had a strong constitution and could eat anything and everything. During a period of stress seven years ago (the birth of my first child), I developed symptoms which were eventually diagnosed as Celiac disease. Since then (at least, in the years which followed) my sleep has deteriorated, to the extend that I spend each and every day feeling absolutely exhausted.

I don't ever fall asleep during the day, but there have been times when driving late in the evening where I've feared for my safety. Most days I have a sinking feeling and desperate need to be asleep from about 6pm onwards. When times are bad, I have suffered from a variety of symptoms during the day which I feel are all related to bad sleep - confusion, feeling withdrawn from conversation, grumpy, forgetful (my memory is seriously terrible), physically clumsy, disorientated. I find it very, very hard to wake up and become functional in the mornings - every morning. There is a short period from, say, 11am to 4pm where I feel that I function reasonably well, but on bad days I don't even get that luxury.

My Celiac is well managed, I believe - I have regular blood tests, and I am generally relatively symptom-free. But I feel that when I am tired, my digestion becomes more troubling, and visa-versa - when I get bowel cramps or the feeling of bloating, I can be fairly certain of feeling particularly tired the next day.


After a long period of fruitless appointments with the GP, I eventually got a referral to a sleep specialist in July 2017, and did an overnight semi-polysomnography test at home. I was diagnosed with 'severe' PLMD, with a PLM index of 67/hour. We discussed a range of possible medication, and I started a course of Gabapentin. Originally a single dose of 900mg before bed, there was some initial improvement but we increased to 1.5g because the symptoms deteriorated. Since things didn't improve sufficiently, my Neurology specialist switched me to Pregabalin, at 75mg initially and increasing to 150mg. This didn't suit me at all - I found that most days I had symptoms of what felt like flu; aching and generally feeling ill.

Since September 2018, I have been trying Ropinirole, initially at 2mg, and now 3mg in a single dose at bedtime. Although I am reluctant to admit it (I am desperate to find the drug which works for me, so that I can get on with my life), I don't feel that I can live with Ropinirole. It's not working as well as I would like to relieve the feeling of exhaustion. Additionally, there are a few new symptoms which I assume are side-effects: I have developed frequent and regular bouts of RLS earlier on in the evening (7-8pm until bed, some nights bad enough that I have to pace up and down while watching TV or eating dinner). I also occasionally get what feels like a hot flush - I feel suddenly extremely hot, and my skin goes pale and clammy. This lasts for about 30 minutes then subsides. Additionally, I quite frequently feel very nauseous during the first part of the night. I haven't been sick, but I've been awake for a long time feeling like I'm just about to be.

My most recent appointment, at which I was prescribed Ropinirole, suggested that the next steps would be Pramipexole (0.125mg, up to a maximum of 0.75mg), and failing that a switch to, or augmentation with, Clonazepam at 0.5mg-2mg.


I have a few questions which have as yet remained unanswered, and I would very much value your thoughts.

1. My strong suspicion is that there is a link somehow between my sleep issues and my Celiac. Could the Celiac have triggered the PLMD somehow? Could the sleep issues perhaps be related to diet or nutrient absorption?

2. On a similar vein, are there particular levels of vitamins and minerals that I should be checking my blood test results for? My specialist was keen to ensure that my ferritin level didn't dip below 75. I believe it's currently higher than this, but is this the same guidance that you would give?

3. My biggest issue, other than feeling tired all the time, is that I am becoming both fearful of sleep and paranoid that I'm inventing or exaggerating symptoms. I had a diagnosis of PLMD a year and a half ago, after a single overnight test, yet I have absolutely no idea how my leg movements and resulting sleep arousals have changed since then. I feel tired, but I also have a 7 month-old child, so am suffering from broken nights, early starts and all the stresses of family life and an exhausted, breastfeeding partner. I feel as though my symptoms are real and are affecting me greatly, yet I'm paranoid that I'm making things up, and that I should never compare my 'tiredness' with that of my wife, who is up every 2 hours through the night to feed. My question: is there any way that I can monitor my PLMD myself, so that I can be reassured either that the drugs are working effectively and I'm tired for other reasons, or that the drugs aren't working and my feelings of tiredness are truly a result of PLMD, and hence entirely understandable? Do you have any suggestions for how I can properly assess the effectiveness of each of the drugs I try, other than a fuzzy and unscientific measure of how tired I feel?

4. Although I hate the idea of being dependent on medicine, I do accept that if I can find a drug which makes my sleep issues go away, I will be much happier. Given my history as described above, what would you recommend as my next steps for drugs to try?

George C.

A Medical Reply

There are several issues with your diagnosis and treatment.

You do have frequent PLM at 67/hour but they may not be causing you any issues except for triggering your doctors to give you medical treatment. There is really no proof that PLM cause next day issues like fatigue or sleepiness. The PLM could be due to other medical conditions and many medications cause increased PLM. If there is a connection between PLM and celiac disease, it would be due to iron deficiency and even with a reasonable ferritin of 75 or so, you could have decreased brain iron (we would need a spinal tap to assess that and of course, that is not something we generally perform for PLM or RLS). Furthermore, if there was to be even a small link with PLM and daytime sleepiness symptoms, it would be more correlated (if at all) with the PLM arousal index not the simple general PLM index.

Therefore, most RLS specialists would not have treated this PLM issue in the first place. Treating with dopamine agonists like ropinirole or pramipexole usually do effectively reduce PLM down to about 10% of their previous level. However, this treatment is not really necessary as I have noted above. Furthermore, in many patients with true PLM (not due to medication or another disorder like sleep apnea), giving a dopamine agonist may help at first then worsen the PLM and also cause RLS (which may dramatically worse).

I don’t have an answer for your sleepiness problem but I doubt it has anything to do with PLM. My best advice would be to taper off the ropinirole and not to take pramipexole.

Sent: Sunday, January 6, 2019 7:45 AM
Subject: RLS medication

I have been successfully rotating opioids monthly( namely Codeine and Tramadol) for a couple of years. However, they have recently been causing serious insomnia. I am thinking that I could "reset" my brain and their efficacy if I have a prolonged break from them. And to do this I would need an interim drug. I am unable to tolerate Gabapentin.

Could you suggest an alternative medication that I could try as well as a suggested dose?

Anne B.

A Medical Reply

I am not sure why you have been rotating codeine and tramadol as at low doses, we normally don’t see tolerance develop with these low potency opioids. Insomnia tends to occur more often with tramadol compared to true opioids like codeine (which tend to cause more sedation rather than insomnia) but anything is possible.

I am not sure that getting off the tramadol and codeine for a while will make a difference, but your options would be to try another opioid (like oxycodone at very low doses like ½ or 1 of a 5 mg tablet) or go on ropinirole, pramipexole or the Neupro patch for a week or 2 (hopefully short enough not to induce augmentation).

Sent: Sunday, January 6, 2019 1:08 PM
Subject: Coming off Ropinirole

I really need your help. I have suffered from RLS in arms and legs 24/7 for some 30+ years.

I have been on ropinirole for about 13 years and for most of this time I've been taking Ropinirole 5mg daily spread over the 24 hour period (10 x .5mg) together with Codeine Phosphate 10 x 15mg daily. Life is a constant battle and my sleep consists of about 3 or 4 fragmented hours. It is likely that I have augmented and have been so for many many years.

Your guidance in how to come off ropinirole would be so much appreciated. I want to come off this medication so much. Have been fearful of trying to do so because of the stories of hellish torture. Also my dose is too high to just stop and it seems that weaning off draws the process out for a very long time.

My GP is willing to help me but is uneducated in RLS. He has always tried to help. I live in Northern Ireland and there are no known RLS experienced Neurologists here in N. Ireland. My GP has suggested referring me to a Neurologist (again) but the last visit some 6 years ago was a total waste of time. At that appointment the neurologist told me to ''continue supplementing the ropinirole with the codeine''...... An appointment on the NHS will have a wait of about 2 years to see someone who knows little..... but I'd be willing to pay for an early consultation if there was a known RLS experienced neurologist.
Often I have not slept for 36/48 hours. I hope to speak to GP on Mon 7 Jan 2019 per telephone and ask about should my Pregabalin be upped after these 2 weeks, and about how to reduce the ropinirole. He has not suggested a reduction plan and I'm sure that he will not have the knowledge off the top of his head.

On 1 and 2 Jan 2019 I did an experiment and took 2 pregabalin at 9pm and slept much better, just up once for a half hour each night. On the 3rd night it was not so successful. Back to 1 pregabalin at morning and night, (don’t want to run out of the pills) and back to about 3 – 4 hours fragmented sleep. Often I don't sleep for 36/48 hours.

I hope to speak to GP on Mon 7 Jan 19 per telephone and ask about should my Pregabalin be upped after these 2 weeks, and about reducing the ropinirole..... he has not suggested a reduction plan. Could I be already reaching the stage of feeling the effects of the ropinirole reduction.

I have asked my GP for his support to taper off Ropinirole and will he provide the opiates as needed to help me. GP said that there is a limit to how much opiate he is able to prescribe and upon looking at my current Codeine Phosphate prescription he says I have quite a bit to go.

Please can you guide me in coming of my Ropinirole, I am very afraid. But I am also aware that those who have successfully come off the Ropinirole say it is the best thing they have ever done.

Betty R.

A Medical Reply

You are most likely correct that augmentation is the reason that you are having so much trouble with your RLS. If done properly, transitioning off ropinirole (which is the best course of therapy) can actually be quite painless. However, it requires high potency opioids (methadone or at least oxycodone) which may be difficult to get in Northern Ireland. The codeine is not very potent and most likely, even higher doses will not do the job.

If you can’t get potent opioids, then stopping the ropinirole (you could try going cold turkey off the ropinirole and if you have trouble, then you can try tapering) may be tried by using the highest doses of codeine in addition to higher doses of pregabalin (up to 300 mg twice daily as long as you do not experience too much sedation).

Sent: Wednesday, January 9, 2019 7:48 AM
Subject: My RLS Story.

I am a 63 year old, female, retired pharmaceutical representative. I have had restless legs since I was 15 years old--- my mother and grandmother had a bad case of it too!

Here are the notes of my last visit to my neurologist: "Her troubles have become severe. Since her right hip replacement, she has jerking in her right leg which dominates her entire day. This has become disabling because she can't sit more than 10 minutes, can't travel, and watches TV standing. Sleep has become impossible. She has tried numerous agents over the years, including, Requip, Requip xl, Mirapex, Sinemet, Gabapentin, Neupro, medical marijuana, and acupuncture-- with no benefit.

She is currently on Tramadol and Requip (which augmented some time ago). We have also tried iron infusions, with a somewhat activation of her legs. I believe that she is a good candidate for DBS (deep brain stimulation).

Well, after that, I saw a different Doctor-- a pain medicine physician who put me on Suboxone where I was withdrawn from the Tramadol and Requip. It was an easy withdrawal except for the vomiting the first day. I have been stable now for over a year on the Suboxone at 2mg per day. By "stable", I mean that my legs don't move/jerk. But I have been told that my personality has changed, and I have more anger and reacting. Stress is also harder to manage. While I'm extremely grateful for my relief (because I had become suicidal), I am having a difficult time managing the side effects of the Suboxone.

My question would be whether or not I should just accept this new limitation on life, or continue to purse something else?

Nancy W.

A Medical Reply

Suboxone is a reasonable choice (although not typically amongst the first in the opioid category that we experts choose) to treat refractory RLS. My suggestion would be to try other opioids at low dose. That would include low dose methadone or oxycodone (there are several others).

It is likely that one of these opioids may not cause a personality change while easily relieving your RLS. This may take some trial and error. As long as you keep the opioid dose low, you should not have issues with tolerance or dependence.

A Reply from Nancy

Sent: Thursday, January 10, 2019 4:05 AM
Subject: Re: My RLS Story.

One more follow up:  what is it that makes the Suboxone so different from the other opioids?  Especially for RLS?

Nancy W.

A Medical Reply

Suboxone is a reasonable choice (although not typically amongst the first in the opioid category that we experts choose) to treat refractory RLS. My suggestion would be to try other opioids at low dose. That would include low dose methadone or oxycodone (there are several others). It is likely that one of these opioids may not cause a personality change while easily relieving your RLS. This may take some trial and error.

As long as you keep the opioid dose low, you should not have issues with tolerance or dependence.

Sent: Thursday, October 4, 2018 3:05 PM
Subject: dealing with side effects

I am hoping that you can provide some insight for me regarding meds. I have been taking oxycodone for about a year. It takes care of the RLS symptoms, but I have insomnia many nights and am now depressed and anxious and unable to rest well day or night. I feel tired all day long even when I do sleep. My mood and energy level is very low.

My physician has suggested that I try to cut back on the oxycodone and combine with xanax and then try to get off of the oxycodone and see if Xanax will take care of it. Eleven years ago, they tried to treat my RLS with xanax and it did not work and that is when I started Mirapex on which I augmented. I don't know whether to proceed with the xanax approach, or try a different opioid or whether I should add an antidepressant to the oxycodone? I have tried taking less oxycodone and adding xanax and the xanax seems to make me feel even more exhausted, but unable to rest.

My physician does not believe that the depression and anxiety are caused by the oxycodone. I have read that it is common, but he thinks it is unrelated. It is exhausting trying to figure this out on my own.

Based on your experience, do you have any suggestions I could share with my local neurologist? Is there a different opioid that has less depressive side effects? I have tried gabapentin on several occasions, but it caused insomnia. Would adding an antidepressant to the opioid help with the insomnia?

Mara R.

A Medical Reply

It may be difficult to give you my standard advice since you seem to have paradoxical reactions to some of the medications. Normally opioids and especially gabapentin tend to cause sedation as their more common side effect that affects sleep. I do see some patients with insomnia with some opioids but not others and the only was to resolve this issue is trial and error with other opioids (methadone, oxymorphone, hydromorphone, Nucynta, morphine sulphate, etc.) until you find one that does not cause insomnia (or anxiety/depression).

It is not uncommon for opioids to cause depression although anxiety is less common. However, it is hard to know how much (if any) that the oxycodone is causing anxiety/depression over and above your lack of sleep (which could be responsible for that entire problem).

The plan to add Xanax and taper off oxycodone is guaranteed to fail (as you already know). Adding an antidepressant typically worsen RLS and makes the treatment process more difficult.

My general suggestion would be to try different opioids until you find the one you prefer. It sometimes take me trying 6-8 opioids until I find the one that my patient may tolerate.

A Reply from Mara

Sent: Tuesday, January 15, 2019 8:43 AM
Subject: Re: dealing with side effects

I have continued taking oxycodone and still struggle with insomnia, anxiety and depression. I live in the Midwest and SAD is a problem for me. The insomnia is chronic and even with the RLS under control, I am still unable to sleep which then makes the anxiety and depression worse.

You have said that taking an antidepressant makes the treatment of RLS more difficult and I know that oxycodone can contribute to depression and cause some to have trouble sleeping. I really need to try something different that will help with my sleep, anxiety and depression and continue to treat the RLS symptoms which I only have at night. I have augmented on Mirapex and tried gabapentin etc. I have tried methadone for several nights and had trouble breathing or catching my breath. Hydrocodone was not as effective as oxycodone.

Which of the opioids you have mentioned would make the most sense to consider, that is, would not contribute to my tendency towards anxiety, depression and insomnia? My RLS is currently controlled with 5 - 7.5 mg of oxycodone. I believe that if I could sleep, the anxiety and depression would improve. However, when I was taking Mirapex for 10 years, my RLS was under control, but I still experienced SAD and broken sleep throughout the year. I just don't know what is causing what. I am seeing a neurologist (who keeps suggesting the use of Xanax and antidepressants) and psychiatrist and yet no one seems to understand the big picture when RLS is involved.

Mara R.

A Medical Reply

Unfortunately, most doctors (including most specialists) know little about RLS and how drugs may affect this disease.

As far as which opioids would be best, as I mentioned in my previous email, this is only done by trial and error and there is no particular opioid that I can recommend. The ones that I try include hydromorphone, oxymorphone, levorphanol, and Nucynta. I am also using Belbuca but most doctors are not very familiar with this drug (and thus it may be difficult for them to prescribe it) although this drug is likely much safer than other opioids.

Wellbutrin is one of the few antidepressants that does not worsen RLS but it may cause an increase in anxiety.

Sent: Wednesday, January 16, 2019 10:54 PM
Subject: A bit of a crisis

I live in the UK. I have suffered from RLS and PLMD for at least 30 years, now 67. I had a crisis in 2006 as I was not really sleeping at all for possibly weeks. My GP referred me to a neurologist who prescribed Pramipexole. I started on a low dose and was told I could increase it if needed. I have been taking it ever since.

In about 2010 I was having problems again with the PMLD or as I call it, "twitching". I saw another neurologist who recommended a 4 week course of Clonazepam, no longer. It worked at that time and I have repeated that once with good result. Since then, the RLS and twitching have got steadily worse.

In 2017, I had nerve pain and an MRI which suggested nerve compression at level L4 - L5. This was due to degeneration rather than a possible prostate cancer metastasis. My GP started me on Amitriptyline. In 2018, the nerve pain got a lot worse to the point I couldn't walk or even stand for more than 30 seconds. My GP prescribed Naproxen for 2 months, stopped the Amitriptyline and started me on Gabapentin. This combination brought pain levels down to manageable. Last year I also discovered that the dose of Pramipexole I was on, was perhaps too high, 0.75, and that Gabapentin is also used for RLS. I took the opportunity to reduce the Pramipexole to 0.5.

I'm now taking Pramipexole 0.5 in the evening and Gabapentin 100mg 3 X a day. Things are now quite bad. I can't get to sleep at night if I don't take the Pramipexole. However since last November, I really struggle to stay asleep at night for more than 4 hours. I don't twitch, but I just can't get back to sleep. During the day, I'm irritable, short tempered, clumsy, poor concentration etc. Also drowsy. If I try to have a nap, though, I can't. This due to twitching, legs, arms, shoulders, sometimes with painful spasms.

My GP and neurologist seen ignorant about RLS/PMLD. I can only take Clonazepam short term and I'm really reluctant to take opiates or higher doses of Gabapentin. Pramipexole is becoming a part of the problem, but I can't sleep at all without it. It seems I'm between a rock and a hard place.

Normally, if I sleep well at night, augmentation during the day isn't too much of a problem because I'm active. None of the recommended sleep hygiene measures work however. I'm trying tryptophan with which is helping my mood, but not the insomnia. My wife is worrying about me and I'm worried about the effects of sleep deprivation.

What else can I do?

Tim S.

A Medical Reply

As you have already discovered, pramipexole dramatically helps RLS at first, but with time, the RLS gets worse and worse. The correct treatment is to get off the pramipexole and after 1-3 weeks (sometimes longer), the RLS symptoms typically decrease significantly. However, as you already know, without additional treatment, you may not sleep at all for those few weeks (or longer).

That is why most of us recommend treating the RLS augmentation with potent opioids. I do understand your reluctance to go on opioids (and they can be difficult to get in the UK), but if prescribed properly, they are very safe and effective (see attached article). You are otherwise between a rock and a hard place but with proper use of opioids, you have an excellent chance of being symptoms free.

Clonazepam does not treat RLS but rather just puts people to sleep. It has a very long half-life so can cause next day sedation and can be quite addicting.

Sent: Saturday, January 26, 2019 1:14 AM
Subject: Antidepressants with RLS

My therapist recommended that I start taking Prozac (for severe depression and also OCD that has gotten out of hand) but I know that with my current medications (methadone and Neupro 1mg daily) that this is probably out of the question. Are there any alternatives that would treat depression and OCD?

Also, I'm having a hard time finding a psychiatrist that is knowledgeable in this and was wondering, since I have an appointment coming up in February with you at Stanford Sleep Center, would you be able to prescribe something then to treat depression/OCD that would work with my current medications?

Jessica A.

A Medical Reply

Most all the antidepressant medications worsen RLS. However, some patients may do well with them or when necessary, we just treat around them (increase the RLS treatment if needed).

Wellbutrin is one of the few antidepressants that does not worsen RLS but it may not help your depression/OCD.

See what your psychiatrist wants to treat you with (after discussing this info) and we can decide on the best course of therapy. However, often a lot of trial and error is required.

Sent: Sunday, January 27, 2019 9:54 AM
Subject: RLS in the morning

I and 43 years old and was hastily diagnosed with RLS at age 25 and prescribed 600mg of Gabapentin at bedtime. Currently I am on 300 mg of Gabapentin and have pretty good symptom control and sleep 6 to 7 hours per night. My maternal grandfather and mother were also diagnosed at similar ages.

My RLS diagnosis is inconclusive by all doctors I have seen because my legs don't move and my symptoms are much more intense in the morning. I feel a feeling of electricity or noise, almost pain on the nerves in my calves and often my forearms. The sensation is temporarily relieved by intense massage. I suspect that intense dreams make my leg pain worse when I wakeup.

I suffer from moderate social anxiety and also feel a link between anxiety and my version of RLS. I often wonder if I am experiencing anxiety in my dreams and that leads to more intense RLS sensations in the morning. The feeling fades after I am up for about an hour, but they are present at a low level all day. Also my symptoms are aggravated by caffeine, alcohol (red wine in particular), and dehydration.

Have you heard of patients with RLS symptoms like mine? If its not RLS what could it be?

Brad W.
Victoria, Canada

A Medical Reply

RLS may vary considerably and patients typically have difficulty describing them. The key to diagnosing RLS is that symptoms occur in the legs (and often in other body parts but legs must have been involved initially) at rest and improve somewhat (or completely) with movement. This includes massage, shaking the legs and usually most effectively by walking (which should also help the abnormal sensations in your arms) . If walking helps relieve your leg symptoms then they return when you stop walking (this may take a while if you walk more than a few minutes) then you likely have RLS.

I have seen a few patients with RLS mostly in the morning but in your case, this may be a result of your bedtime dose of gabapentin wearing off by the morning.

A Reply from Brad

Sent: Sunday, January 27, 2019 1:51 PM
Subject: Re: RLS in the morning

Thanks for your quick response. I definitely think the Gabapentin wearing off in the morning is part of it. I recall now the reduction in my dosage from 600mg to 300mg was done to reduce drowsiness during the first couple hours in the morning.

Brad W.

Sent: Friday, February 1, 2019 1:35 AM
Subject: Request for advice re RLS medication

I have had RLS since at least the age of 13 when I thought it was just tiredness. I am now 68.

I have withdrawn from 1.5mg Ropinirole and am now on 150mg Pregabalin, 5mg Oxycodone and 30mg Codeine before bed and a further 30mg codeine during the night.

I’m experiencing extreme tiredness during the day and wonder which of the medications is causing this. I’ve tried cutting the codeine but then experience dire nights. Even so I’m up twice every night. I usually have 6 hours of sleep but can wake up in the morning (with RLS) and some days have such tension and the urge to move (especially in my left arm) that I can’t do anything productive.

Driving can be tricky at times when the extreme tiredness and urge to move (which I have always associated with RLS) suddenly sets it.

I’m also experiencing quite sudden weight gain in the past four weeks of about 10lbs or more. I’m a slim person who only gains weight as a side effect of medication. I have puffy hands, wrists, ankles and generally around the waist/tummy, so I’m assuming this is fluid retention perhaps because of Pregabalin. I can cope with some weight gain but no more than this as I have arthritis in my spine and carrying weight is not good for it.

How can I get off the Oxycodone? I would be content to stay on the codeine if necessary. Is it worth increasing the Pregabalin? Please will you advise me? A more detailed history is given below in case it helps.

I coped for many years on Rutivite (green buckwheat) and ibuprofen tablets/gel. When it started waking me up in the night I couldn’t cope any more. I was prescribed codeine which worked quite well but the maximum I was allowed was 30mg.

Sleep has got worse over the years.

Back in November 2017 my doctor suggested Ropinirole as it might help sleep as well as controlling RLS. I levelled out at 1mg. It worked really well. I augmented and increased dose to 1.25mg. Augmented again so took 1.5mg. By the time I was augmenting again I’d done my research and discussed withdrawing with my doctor and so started to wean off on 5th November, 2018. I had been talking with my doctor about doing this since September when I’d had a surprising ferritin level test result of 189ng/ml, despite having been ‘anaemic’ much of my life.

I took the final dose of Ropinirole on 19th December.

To see me through withdrawal I was prescribed Tramadol and codeine. Tramadol didn’t suit me – being suddenly and violently sick. I was changed to Oxycodone. Longtec, slow release, lasted no longer than Shortec and was less predictable of when it would take effect so I stayed on the Shortec version.

At the worst stage I was taking 1 x 5mg Oxycodone at bedtime and 1 x 5mg during the night, plus 60mg codeine at bedtime. They worked well.

I started taking 50mg Pregabalin on 1st January, increasing to 100mg on 13th and 150mg on 21st. I managed to get down to 5mg Oxycodone at bedtime along with 30mg codeine, with a top up of 30mg codeine during the night.

But I now seem stuck, unable to stop the Oxycodone without dire consequences (I have tried), nor to reduce the codeine, which I have also tried, though not for more than three consecutive days!

Alternative treatments I have or am using:
• Rutivite (green buckwheat) – I have been taking 2 per night for many years – it supposedly helps circulation
• Ibprofen 400mg – this usually helps
• Ibuprofen gel on calves – I have much worse symptoms if I don’t use it.
• Magnesium oil – it worked the first night but after that it almost seemed to have an adverse effect
• Iron Bisglycinate plus Vitamin C, alternate days on an empty stomach
• compression socks/hose – these seem to have a beneficial effect of reducing symptoms

I don’t know which of the drugs is doing what to me. May I ask what would you suggest as a way forward? I saw a neurologist in early December whose three options, after I had already spoken to him about 1 and 2, were:

1. Consider Pregabalin at 50mgs per night, increasing to a max of 150 daily
2. If that doesn't work try Gabapentin 100mg building up, as necessary to a max of 1,200mgs daily
3. If both of those fail consider Levodopa in the form of Madopar 62.5mgs at night and increasing as required and tolerated to 250mgs.

Is 3. a sensible option?

Helen H.

A Medical Reply

Most likely, it is the pregabalin that is causing your daytime sleepiness. Increasing the dose may help your RLS but may increase your sleepiness. I cannot say that the opioids are not causing or adding to the daytime sleepiness, but that is less likely.

My suggestion would be to try to get off the pregabalin and just use oxycodone. I would also stop the codeine as it is a very weak opioid that only provides minor relief from RLS. It may be better to take a few doses of oxycodone as the only drug to treat your RLS. You might have trouble getting your doctor to prescribe enough oxycodone to treat your RLS by itself but I suspect that would be the best course of therapy.

Ferritin levels can be misleading as they can be elevated by any inflammation (such as a flu/cold) even as long as a month or more ago. I would repeat the ferritin level (fasting) and also iron and iron saturation levels to be sure about your iron status.

You could use levodopa up to 2 times per week to help control any breakthrough RLS symptoms without concerns for augmentation.

Sent: Tuesday, February 5, 2019 8:24 AM
Subject: Leg Issues related to RLS?

I am 49 years old and have suffered from RLS since I was a teenager. I have been taking 400 mg of Lyrica every night before bed for about 3 years now. I previously took Mirapex and Requip which eventually caused horrible augmentation. I also took Tramadol for a short time which I don't feel really helped much. The Lyrica seems to be the only thing that has finally helped.

Is it possible to build up a tolerance to it? I feel like it's not helping as much as it used to. Should I maybe spread out the dosage during the day? Should I try an opioid? I've also begun having another issue in the evening and was wondering if it might be related to the RLS. When I get in bed to watch TV, I begin tensing up the muscles in my legs to the point of pain, and sometimes I'm not aware I'm doing it until it hurts. I stretch them out as far as possible. I'll do this several times until I finally give up and just take my Lyrica and my sleep aid and go to bed.

Kay C.

A Medical Reply

It is not very likely that you are developing tolerance to Lyrica. It is possible that your RLS may be getting worse with time or other issues are making your RLS worse (several issues such as other medications, low iron levels, stress, etc.).

One easy solution would be to take your Lyrica 1-2 hours before you go to bed (it take an hour or more to get to peak action). It is much easier to prevent RLS symptoms compared to getting rid of active symptoms. The new symptoms do sound like RLS so if you are going to watch TV in the evening, I would recommend taking the Lyrica one hour before watching TV (unless you want to ride a stationary bike while watching TV).

If the above advice does not help, then adding a potent opioid (like methadone or oxycodone) at a low dose would be very helpful.

Sent: Tuesday, February 12, 2019 10:54 PM
Subject: Cutting a pill in half

I take PRAMIPEXOLE 0.25 can you cut them in half and only take half running out and my appt is to far away and she said she can't refill them cause it's been a year since I been there well I had surgery and my recovery is taking longer than I expected and I'm still not doing well so I have no refills on them and my primary doctor won't give me any refills she doesn't feel comfortable.

She said I need to go back to the specialist who gave them to me I don't think that's right can you just stop taking this pill like that or are you slowly supposed to be weaned off the pill? I only have seven left. Can I cut them in half so I can make them last without them my legs go crazy?

Annette M.

A Medical Reply

You can cut the pramipexole in half. However, expect a marked increase in your RLS symptoms. However, if and when you run out completely, your RLS will dramatically increase (way above just cutting down the dose) so that you may not be able to get any sleep for several weeks.

You do want to get your refill as soon as possible so that you don’t suffer.

Sent: Sunday, March 3, 2019 6:18 AM
Subject: RLS sufferer question

I'm a 77 year old female and have a long history with RLS.

In 2003, I initially started Requip for treatment, but augmented quickly. I was therefore prescribed a low dose of Gabapentin to take in conjunction w/ the Requip until I was able to cut back significantly on the Requip. I am now on only 2mg of Requip.

I also have some mild Parkinsonian symptoms so I was also prescribed a low dose of Sinemet to take along with the 2mg of Requip and the gabapentin.

While they are at low doses, I do NOT like taking THREE different drugs, and I can tell my focus and memory are getting worse. I tried to quit Sinemet, but the feeling in my legs becomes extremely heavy when I stop it so I keep taking it.

Where do I start if I want to abandon all these pills?? I understand getting off these drugs require supervision and some heavy opiates but of course that makes me nervous as well as I do not want to replace one problem with another.

I’d appreciate any advice you may have for me, what to do and how/where to do this IF this is even possible.

Lila

A Medical Reply

You are correct that you will need lots of supervision to make a change in your medication. If you truly have Parkinson's Disease, then it may be more difficult since you may need the Sinemet and Requip to treat the PD.

You should see an expert in both RLS and PD (a neurologist who is also a Sleep/RLS specialist) and can find one by looking up the RLS Quality Centers on the RLS Foundation's website (www.rls.org).

Sent: Thursday, March 28, 2019 9:42 AM
Subject: RLS

I stumbled upon an online discussion regarding RLS and mentioning Dr Mark's saint-like willingness to take the time to answer to emails and, being desperate enough, have resorted to contacting him.

I am a 26 yo math graduate with a severe, hereditary case of RLS. Severe meaning on daily basis and resulting in frequent awakenings during the night, poor sleep quality and unrefreshing sleep. I am more on the side of hypersomnia and somnolence, than insomnia due to RLS: no matter how much I sleep, I wake up tired, even after treating moderate sleep apnea with CPAP, and in the absence of other health problems.

I was diagnosed only recently and put on pramipexole 0.25mg each night. Where I live, RLS is poorly understood and my reluctance towards DAs and suggestion to take pregabalin, clonazepam or gabapentin has been dismissed by two neurologists as "don't believe everything you read on the internet."

That being said, I fear both DAWS and augmentation. And am writing to you. Is it safe to take pramipexole, given that I am still young, or should I start another protocol? Maybe you could offer me an exact dosage of a non-DA treatment, which I could forward to my (much less knowledgeable) neurologist. Were I in the US, I would gladly see you, but since it's not the case, this is the only viable alternative I have.

B.M.

A Medical Reply

The issue with taking pramipexole is that there is a 7-8% augmentation rate per year. That means that after 10 years, you have about a 70-80% chance of experiencing augmentation.

My suggestion is to try gabapentin or Lyrica. The side effects of these drugs typically occur early on after starting them and will reverse quickly with stopping them.

You should also check your iron and ferritin levels as if they are low (not according to your lab but rather using RLS accepted levels), iron supplementation may be helpful.

A Reply from BM

Sent: Friday, March 29, 2019 6:18 AM
Subject: Re: RLS

My hemoglobin stands at 170, my ferritin at 110, so (unfortunately) I can't resort to that solution. How much gabapentin or Lyrica should I take each night before bed? My only imperative (for now) is to get appropriate, high quality sleep, I do not need to seek symptom relief during the day. Horizant is not available here, so I have to deal with the regular version.

B.M.

A Medical Reply

Gabapentin is started between 100 mg to 300 mg in the evening. The dose can then be increased every week by the starting dose (if needed) to a maximum of 600-900 mg.

Lyrica is started at 50 mg to 75 mg and increased by the starting dose every week if needed to a maximum dose of 300 mg.

Sent: Friday, March 29, 2019 1:25 PM
Subject: Quick transferrin question

I'm the neuro-psychologist with very severe RLS. Just had some labs done. My transferrin is 27%, within the reference range. (My other labs, including Iron level and Total Iron binding, are all normal.)

Do any research studies suggest that a 27% transferrin result in RLS patients might nonetheless merit an iron infusion?

Sharon S.

A Medical Reply

Although your transferrin saturation is considered normal, it just reflects the iron in the blood, not the iron in the brain. We have found many patients who need much higher blood levels of iron and ferritin to get enough into the brain to relieve RLS symptoms. However, most insurance companies will not cover iron infusion therapy without a low iron/ferritin level in the recent past.

However, even with low iron levels, not every RLS patient will benefit from an iron infusion.

Sent: Thursday, April 4, 2019 4:11 AM
Subject: RLS and the FODMAP diet

I have had RLS for about 60 years. Several years ago I experimented with diets and found a good improvement by eliminating gluten. Further experimenting discovered the FODMAP exclusion diet and the I added some aspects of the Prince Alfred Hospital Low Chemical Diet. For the last few years my RLS has been almost fully under control. I have had several periods of around 25 days and nights with no RLS and the RLS I experience is very mild. Before the diet I had RLS every night and usually had to walk in circles until around 5am.

But I was encouraged by papers I have read of yours to raise my ferritin to around 350 to see if I can get 100% relief. My ferritin last October before the iron infusion was around 105 and 8 weeks after it was 343. I think my RLS may have worsened a bit until February and then, about 4 weeks ago, the RLS stopped. I am now experimenting with expanding my range of foods but very slowly.

I had expected a delay but I had been told that 12 weeks was the longest delay to decide if it had worked or not. I have to wait a few more months to believe I have a real solution to my problem but its looking good now.

Graham R.

A Medical Reply

Although we have many anecdotal reports of different diets helping RLS, almost none of these diets seem to help more than a few RLS sufferers. However, if you have found a diet that works for you, it would be quite reasonable for you to continue on it.

It normally takes about 4 weeks or so for an iron infusion to become effective so your experience is quite usual.

Hopefully, your RLS will continue to do well as long as your ferritin levels up at high levels.

Sent: Friday, April 5, 2019 5:17:37 AM
Subject: RE: Is this RLS

My RLS symptoms have been under control. But I have just started the gym and they have 'awakened'. I don't know if to persevere or just give up exercising.

Louis B.

A Medical Reply

Mild to moderate exercise helps reduce RLS symptoms. However, vigorous exercise (and that of course varies considerably from person to person) very often worsens RLS. As you get into better shape, your current level of exercise may not cause an increase in RLS symptoms.

Sent: Friday, April 5, 2019 11:42 AM
Subject: Periodic leg movements during REM sleep

I am in the UK where, as you likely know, understanding of and treatment options for RLS and PLMD are poor. I was diagnosed with PLMS by polysomnograph a year ago and was told by the consultant that the movements continued throughout all stages of sleep including REM sleep, which was 'unusual'. All the information I have found on the internet in this regard suggests that it is, indeed, unusual for the movements to occur during REM sleep as the limbs are usually paralyzed.

No investigations have been carried out to ascertain why this might be the case for me, and I have been through the usual UK approach of simply trying one medication after another (from a very limited list of medications that UK doctors are prepared to try and a strictly monotherapeutic approach) in the hopes something works. Nothing has so far resulted in any improvement in the quality of my sleep, and I have been quite susceptible to side effects. I have had an iron infusion, and been prescribed pregabalin, ropinirole, melatonin, rotigotine, codeine and oxycodone.

By the way, I do not generally have RLS which makes it more difficult to know if a medication is having any impact on leg movements - I can only go by whether I find sleep more refreshing. Several of the medications have disturbed me sleep to an even greater extent than normal.

Do you have experience of patients whose leg movements continue during REM sleep, whether you have any suggestions as to why this might be, and whether you have found any particular therapy to be more efficacious in such cases?

Luane N.

A Medical Reply

There are several issues with your medical problems.

PLM do occur during REM sleep but much less often than in NREM sleep. There are some conditions like RBD (REM Behavior Disorder), narcolepsy, etc. where PLM occur more frequently in REM sleep.

PLM are very common in RLS patients but actually occur more often overall in patients without RLS. PLM are very common in patients on antidepressant medications (such as SSRI and SNRI medications), patients with sleep apnea, narcolepsy, etc. Since you don’t have RLS symptoms, it may be quite likely that there is another cause of your PLM.

The last issue is that although it seems very logical that increased sleep PLM should cause disturbed and unrefreshed sleep, that has not been proven in medical studies. In fact, there is no correlation between the amount of PLM during sleep and how refreshing people rate their sleep. There thus may be another reason for your daytime sleepiness and fatigue.

 Sent: Sunday, April 14, 2019 1:13 PM
 Subject: Dosing for Belbuca
 

I had written to you previously about my being on Suboxone for my RLS.  While it works well, the side effects are not pleasant and are
affecting my relationship. I get anger outbursts (that I never had  before), and itching, among others. My doctor is willing to switch me
over to Belbuca to try. I currently take 2mg. of Suboxone in divided  doses. Could you recommend an equivalent dose to that for the Belbuca?

I would truly appreciate any suggestions that you have. I had run the  course of all the others drugs, including augmentation on the dopamine  agonists. I am hoping for a better quality of life with a different opioid.

 Nancy W.

A Medical Reply

There is no direct relationship between Suboxone dosing and Belbuca dosing. Although both contain buprenorphine, the Suboxone contains naloxone  and it is very difficult to figure out dose equivalents. However, the  best recommendation would be to start with the lowest dose of Belbuca at 75 mcg and work up slowly to the lowest effective dose (the 75 mcg  might be adequate).
 
 Let me know how the transfer works out.

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