Sent: Thursday, August 04, 2016 7:18 PM
Subject: RLS help
I am a 38 year old healthy female. I have suffered from restless leg syndrome
for as long as I can remember. It was never severe and only happened once in
awhile. Since February of this year I have been suffering every single day. I
would now describe my RLS as severe. My restless legs are the worst at night but
I've been noticing restless legs anytime I'm still for a period of time. Long
car rides and recently had issues while at the dentist. In December of 2015 I
was put on 20 mg of Prozac for anxiety and depression. That has been the only
change. I read that antidepressants can exacerbate RLS. If so, this is
definitely the case for me. I have tried to up my dose of Prozac to 40 mg but it
makes my legs worse. Are you familiar with antidepressants exacerbating RLS and
would you consider Prozac being the cause of my RLS?
I have tried many things to help my RLS. My doctor tried switching my
antidepressant to Effexor (I'm currently back on Prozac), I've had blood work,
MRI of my lower back, and nerve testing done on my legs. All tests came back
with normal results. I also have tried Lyrica and Requip with no luck. The only
thing that has worked for me is Percocet. My doctor initially prescribed me 5mg
Percocet to take at bedtime. It has been working the best. I tend to be
sensitive to side effects of medicine, especially the medicine hangover feeling
the next morning. Requip was the worst for this.
I have 2 small children and work full time so a medicine hangover is not an option for me. In the middle of all my testing my primary care doctor dismissed me from her practice stating drug seeking behavior. Her statement is completely inaccurate and the Percocet was her idea (this issue is another story). One 5mg Percocet has worked the best for me as I feel like I can still function if my daughter wakes up in the middle of the night and I wake up without the medicine hangover.
I only have taken the Percocet at bedtime and never during the
day. I am from a very small town and I am having a hard time finding a doctor
who is knowledgeable about RLS. It's very frustrating and I feel like I'm not
taken very seriously. I am currently looking for another primary care physician.
Do you suggest a different specialty? Any suggestions I may take with me to talk
with my new doctor about? Also, any other treatments options you may recommend?
I have done hours of research and will read anything I can find on restless leg
syndrome and possible treatment options. Any ideas or suggestions would be
greatly appreciated!
Holly D.
Pennsylvania
Medical Reply
The oxycodone in your Percocet is a reasonable choice if all
other treatments fail. However, you should get the oxycodone prescribed by
itself (unfortunately this may be even harder to get from most physicians) as
the Percocet contains Tylenol which does not help RLS but can cause liver or
kidney problems in the long run.
Other treatment considerations include higher doses of Lyrica (depending upon
what dose you took in the past and whether you had sedative side effects) or
Horizant. The Relaxis vibration pad is a reasonable non-medication approach that
helps many RLS patient.
Almost all the antidepressants worsen RLS so your experience is
quite typical. There are only a few antidepressants (like Wellbutrin) that do
not affect RLS.
It might be better to see a neurologist or sleep specialist but even most of
those doctors are not that knowledgeable about treating RLS with opioids and are
reluctant to use those medications (especially in a small town).
Sent: Wednesday, August 10, 2016 11:35 AM
Subject: Ferritin levels
First of all, I want to thank you profusely for all the help I received from
your site and your email correspondence 9 years ago when I first experienced
RLS. I had developed very low serum Ferritin levels from donating too much
blood. Through your site, I followed the guidelines for iron supplementation. My
levels went from under 10 to over 80 in three months! It has been steadily
around 80 for nearly 9 years and I have been free of RLS.
For the last 6 months or so, my RLS has come back. I thought it might be hormone replacement changes I've been going through, but it still hasn't settled. So I had my Ferritin levels drawn and it is 60. I know your site has said it should be over 50, but is it possible that for me, this drop (from 80 to 60) would be significant enough to trigger the RLS again? The only thing I can come up with as to why the Ferritin has dropped is I have been drinking black tea all day long. (Married a Brit!). No other blood loss of any kind.
Do you think it's possible this decrease could be again
triggering my RLS, even though I'm still above 50?
Linda M.
Medical Reply
We are learning more and more about iron and RLS. The first
issue is that many RLS patients continue to lose iron much faster (up to 10
times faster) than people without RLS. The source of this loss has not been
figured out yet.
There is a more recent article that pushes the old 50 level up to 75. However,
we now give intravenous iron to patients (when we don't get adequate response
with oral iron) and find that some patients get a return of their RLS symptoms
even at reasonably high levels (like 130). The real issue is how much iron is
getting into the brain and the serum (blood) ferritin levels may not always
reflect the brain levels (you would need a spinal tap to determine brain iron
properly).
However, hormone changes can also trigger RLS so it may be difficult to
determine the cause of your RLS worsening.
Sent: Sunday, August 14, 2016 3:44 PM
Subject: Medication advice
I have Periodic Limb movements with arousal. Prior to medication I was waking up
constantly through the night and suffered severe brain fog and exhaustion as a
consequence. I currently take OxyNorm (10mg of short acting oxycodone) with 7 mg
Diazepam at night. Whilst I only wake once or twice on this combination I am
still feeling very drained.
I have only recently moved to OxyNorm from OxyContin as my sleep clinician thought the shorter acting drug may help with next day hangover effect. The OxyNorm has made me feel worse than OxyContin.
Would you be able to advise:
1. Is 6 days days trial of moving from OxyContin to OxyNorm sufficient? If so I
would move back to OxyContin.
2. Is there a shorter acting benzodiazepine I should try alongside instead of
Diazepam which might help reduce my next day fatigue/exhaustion?
James C.
Medical Reply
There are several concerns with your treatment.
Firstly, most RLS/sleep experts currently suggest that PLM (Periodic Limb
Movements) generally should not be treated. Although many arousals may be noted
on a sleep study, it is certainly not clear that treating the PLM with or
without arousals actually help the patient (as opposed to helping the bed
partner).
Oxycodone (in the short acting form of OxyNorm or long acting OxyContin or any
opioid) does not reduce PLM very significantly and would not be drugs of choice
for treating PLM (if it was deemed necessary to treat the PLM). The short acting
oxycodone should cause less next day sedation so if that is not improved, then
there may be another cause (like the diazepam for example). Although we do
prescribe opioids for RLS, they really should not be prescribed for PLM.
Benzodiazepines like diazepam (Valium) do not decrease PLM but rather the
arousals from PLM. Diazepam has a very long half-life (how long it takes your
body to eliminate half the drug from your body) of 40-100 hours which means it
stays in your body for a very long time (and thus could easily cause next day
sedation). There are many shorter acting sleeping pills (if one is really
needed) such as zolpidem, zopiclone, etc.
If the PLM really needed to be treated (doubtful), then gabapentin or Lyrica
would be the best choices and may also help you sleep.
Sent: Friday, August 19, 2016 8:36 AM
Subject: Azathioprine
This is a strange one and you will probably think it’s a coincidence or in my
head but I thought I would run it past you
I came off Azathioprine about 6 months ago . About 6-8 weeks (which is how long
the drug takes to leave your system) after coming off the drug my RLS went
through the roof and stayed like for months and months. I was pulling my hair
out to try and figure out why Then a couple of days ago I went back on to
Azathioprine and I have noticed In a matter of days I am going back to my
baseline of how I was before.
Could Azathioprine the drug improve RLS?
Could the drug be treating what’s causing the RLS but then again it take
Azathioprine 6-12 weeks to kick in?
Adam H.
Medical Reply
Although it takes several weeks for azothioprine to exert its anti-inflammatory effect for your bowel disease, any effect (good or bad) should happen within the first few doses. It is always possible that this drug has some influence on your RLS but I have not seen that occur in the many other RLS patients that I have who have been on azothioprine.
Sent: Saturday, August 20, 2016 7:49 PM
Subject: RLS
My husband has a severe case of RLS. He takes Mirapex(1.5) 2x daily. For years
it's helped but three month ago he had surgery on his spine. Since then he has
only slept 2hours at a time. He walks the floors day and night. The doctor gave
him Ultram for his back and we noticed it's the only thing that calms his legs
down. We have two problems #1. He's maxed out on the Mirapex
and his RLS has drastically worsened after surgery. #2. The Mirapex and the
Ultram makes him so sleepy he can hardly stay awake at work. It's so bad.
It's beginning to affect his ability to perform his job because he never sleeps walking the floors. Then when he takes the Mirapex & Ultram together he's out of it for two days. Even falls asleep while eating. We have an appt. with a RLS Specialist next month. Any advice? We are pretty hopeless at this point.
Brand L.
Medical Reply
The issue with your husband is that he most likely has
augmentation which is a worsening of RLS from taking a dopamine agonist like
Mirapex. This typically occurs with higher doses of Mirapex and your husband's
dose of Mirapex at 3 mg per day is markedly elevated over the maximum approved
dose of .5 mg per day (and I suggest a maximum dose of .25 mg per day).
The treatment for this type of augmentation is to stop the Mirapex and most
often substitute an opioid (usually more potent ones like oxycodone or
methadone). This transition can be tricky and it really helps to have a true RLS
specialist (not many of them available) to manage this situation. With proper
treatment, he should do very well.
Sent: Saturday, August 20, 2016 3:31 PM
Subject: Severe augmentation on dopamine agonists and withdrawal
I live in London, United Kingdom and have severe restless legs and Multiple
sclerosis. I have been using the help pages of the United Kingdom restless legs
group. A number of people have been giving me advice on how to deal with the
severe augmentation I was experiencing on dopamine agonists and how to get off
them. Your name came up a lot.
My neurologists for multiple sclerosis do not seem to be
familiar with RLS or severe augmentation or how to treat augmentation, one even
had me taking amitriptyline at the same time and when it made the condition 100
per cent worse simply said, "that can happen occasionally". They also had me
take gabapentin and pregabalin at the same time as the dopamine agonists.
I have now researched all I can about augmentation and withdrawal and it seems
that the accepted view of specialists is that once augmentation has occurred you
must reduce then stop the dopamine agonists. I was on 2.5 mg of ropinirole
hydrochloride a night and reduced down to zero over 4 months. I persuaded my GP
to prescribe tramadol 50mg, 2 tablets a night to help me get through withdrawal.
I am now on my fifth night without any ropinirole and managing no more than three to three and a half hours sleep a night in half hour sessions. I am going through hell. I am not sure if my multiple sclerosis makes the withdrawal worse. I have been in tears a lot of the time and have to say this is the worst I have ever felt even when in serious MS relapse with occipital neuralgia, oscillopsia, vertigo, total loss of motor function. This is worse than anything MS has ever thrown at me.
I am taking up to150 mg tramadol a night in single 50mg doses. I
do not think methadone would be given here in the UK. I have also been taking
magnesium and iron supplements and 3 months ago went on a very restrictive paleo
diet so I do not eat gluten, dairy, salt, sugar, alcohol, caffeine and eat only
free range lean meat, chicken, fish, eggs, most vegetables, nuts, seeds, low
sugar fruits. I am hoping the paleo diet will generally help me to feel fitter
and stronger and maybe help the MS and the RLS.
How long will it take for the withdrawal to be over and what medications should
I ask my doctors for when I am through the worst? I would really appreciate your
advice, which I would then use to persuade my GP to prescribe the appropriate
medication.
Julie G.
Medical Reply
After stopping a dopamine agonist, it typically takes 10-14 days
for the RLS symptoms to calm down after markedly worsening. Often, the RLS
symptoms will get very much better than before stopping the dopamine agonist at
which point the RLS should be much easier to manage.
For the next week or so, there are a few options. If tramadol is the only
choice, you could increase the tramadol to 2 tablets (100 mg) every 4-6 hours
during the evening and sleep time (please check with your own doctor to make
sure there are no issues with this recommendation). Better than the tramadol
would be to add a potent opioid like oxycodone (more likely for this to be
available in the UK than methadone). If you can’t get oxycodone then a less
potent opioid (such as codeine) might be more helpful than tramadol.
Once you are over the 10-14 day worsening period, an opioid by itself (tramadol
or one of the more potent opioids) at a fairly low dose typically suffices.
Another option to consider then (if needed) is to add gabapentin or Lyrica which
may help lower or even possibly eliminate the opioid dose.
Sent: Tuesday, August 23, 2016 6:44 PM
Subject: how wise is knee surgery?
On May 14, 2014, I contacted you via email and you were kind enough to respond
to me. The letter is available on page 107 of your web site for support of
people with RLS.
I am now confronted with the need to have some reconstruction work done on a
knee joint that was replaced around 2003. I am wondering if that procedure will
make my leg condition worse.
I am still taking pramipexole in a very low dose. I feel that I have diabetic
neuropathy along with the RLS. The condition affects me above the knees and also
in my hands.
What would your thoughts be on the effect that knee surgery will have, if any ?
I certainly wish I lived in your area so I could take advantage of your
practice. I do not find a lot of doctors who
deal with either RLS or neuropathy in the Treasure Coast area of Florida. I did
not get any answers or even much interest when I went to the Cleveland Clinic
Hospital in Broward County. As it
turns out, that is just one of their hospitals, not one that confers with the
main clinic for diagnosis. A bit of a disappointment after going through what I
did there in 2014.
I am suppose to make arrangements at our local hospital for the knee work to be
done but would like some input before doing so. I am concerned about the fact
that the work might make my
condition even worse than it is.
Ron H.
Medical Reply
Typically, RLS should not be an issue after surgery as they give
patients pain medication (opioids) and the opioids control RLS symptoms very
well (with or without your pramipexole). RLS symptoms might get worse once you
are off the opioids due to inactivity (unless you get back to normal activity
very quickly). Sometimes, a major surgery can worsen RLS for the long term, but
that is much less common. Once most patients are active again, RLS symptoms
should go back to normal.
Make sure you give the surgeon and the anesthesiologist a copy of the medical
alert card (you can download it and print it from our website) as it contains a
list of drugs that worsen RLS (and alternatives that are safe for RLS patients)
and many of those drugs are ones that your doctors tend to use before and after
surgery.
Sent: Wednesday, August 24, 2016 11:16 AM
Subject: pain medication and RLS
I have given copies of the Medical Alert Card to my Doctors. It does not list
any pain medication as being a problem. I was going to a Doctor that prescribed
me Lortab. It made me feel weird, did nothing for the pain and worst of all kept
me awake. My son that also has RLS will not take anything that is Hydrocodone.
For the most part we have been lucky and have had no need for pain medication.
Are there others that have problems with different types of pain medications?
Are there some to stay away from if you have RLS or some that are recommended?
Jan S.
Medical Reply
The reason why pain medications are not included on the Medical
Alert card is that pain medication (opioids like hydrocodone) typically help RLS
symptoms rather than worsen them. In fact, opioids are amongst the most potent
treatments for severe RLS.
I cannot explain why hydrocodone worsens your RLS symptoms and that of your
son’s but that is extremely rare.
Sent: Thursday, August 25, 2016 2:52 AM
Subject: Opiates and RLS?
I would be really grateful if you could help me with a question I have about my
Restless Leg Syndrome treatment. I have become concerned about possible long
term side effects following a recent post by a fellow sufferer of this disease
on a support forum. She said that after long term use of opiates she sustained
serious nerve damage and experienced untreatable neurological pain. Obviously I
am worried if this is a common occurrence.
Do you have any experience of this with your patients and what do you think are
the risks of such repercussions? I have been using the following drug
regime for about 4 months:
30mg of codeine at night for 5 days a week then 2 days off. After a month I
change to 10mg of diazepam at night for 5 days a week then 2 days off.
I am hoping that by alternating the drugs monthly in this way I will reduce the
likelihood of tolerance. I would appreciate your feedback based on your
experience of treating patients with opiates on a long term basis
Anne B.
Medical Reply
There are very rare issues only associated with the long term
use of opioids for RLS patients.
I have never heard of anyone sustaining nerve damage/pain from taking opioids
but of course, anything is possible.
Alternating different classes of drugs as you are doing further reduces the risk
of tolerance/dependence (and other problems) from occurring so that is a
reasonable plan. However, you probably would do just as well taking codeine 30
mg daily without any interruption.
Sent: Saturday, August 27, 2016 12:19 AM
Subject: Restless Legs Syndrome
I am hoping that you could advise me on treatment for my restless legs which I
have had just about my whole life (I am now 60 ) it seems to run in my family as
many of us have it but mine is the worst. I have tried all the known
medications, some with short lived success, but everything either makes me worse
or if it works it's short lived. I have the problem of becoming tolerant to
everything that I try.
At the moment I am taking Madopar 250 mg twice per day & OxyContin 10 mg am & 50 mg at night. This is currently getting me through the night but I am having horrible episodes of Restless Legs in the morning & through the day/evening whenever I attempt to sit & relax or if I'm passenger in a car or movies etc. I would appreciate any advice you can give or recommendations you could make.
Vicki H.
Bathurst NSW, Australia
Medical Reply
Your issue is most likely due to a worsening of RLS by your high
dose of Madopar (called Sinemet here is the USA and is carbidopa/levodopa) which
is a process called augmentation. Getting off this drug will make your RLS much
better and easier to control (and likely require a lot less oxycodone). However,
you will have about 10-14 days of marked worsening of RLS until symptoms
improve.
Due to the issues with augmentation, levodopa is no longer recommended or used
for treating RLS.
A Reply from Vicki
Sent: Saturday, August 27, 2016 7:06 PM
Subject: Re: Restless Legs Syndrome
Is there another drug that you would recommend to replace the Madopar ? As the
OxyContin wasn't doing the job & that's why I had to start the Madopar.
Vicki H.
Medical Reply
Although most specialists (like neurologists or sleep specialists) would suggest adding pramipexole or ropinirole (both in the same general category as Madopar), most real RLS experts suggest adding gabapentin or Lyrica. If you take them 1-3 hours before bedtime, they should help the bedtime RLS. They can be taken earlier in the day but some people get quite sleepy on these drugs. Generally, you start on a low dose of either drug and increase every 3-5 days until symptoms are improved.
Sent: Sunday, August 28, 2016 6:56 AM
Subject: Information Wanted- Desperately!
Back in October of 2015, my legs started having bumpy feelings inside of them.
Mostly below the knee, but above as well. Both legs. It was always when I was
prone. It continued and grew in discomfort until for a few nights, I had
excruciating spasms in my legs. Told my primary doctor who sent me to a
neurologist. I saw a sleep specialist in Boulder, Colorado. He diagnosed me with
RLS and told me to take iron and drink tonic water. I tried the tonic water but
did not take it consistently, but did start on Ferrous biglycinate in the AM. It
was like a miracle. Pain stopped. I felt normal again.
Until about a month ago. I had a horrible flare. It began again with the bumps,
and the feeling that “little cars” were traveling up and down my legs- horribly
uncomfortable and then exploding into cramps and spasms. The neurologist told me
to take more iron so I doubled the dose and it seemed to help, for a few days. I
should mention that I have no jerky feelings in my legs nor an urge to move
them. Then, another very bad flare last Thursday. Also during this reoccurrence,
I have a bad twitch in my left eye, aches in my forearms (in one spot- no
traveling) and my jaw hurts and is stiff, and I have periods where I feel sparky
pains coming out of different places in my hear (not a normal headache).
I called the neurologist and he put me on Lyrica. I am nervous
about taking it, scared of a contraindication with the lorazepam I take for
anxiety. He prescribed Lyrica 25 mg/ 2 times a day. I take between .20-.25 mg
lorazepam/24 hours. I decided just to take the Lyrica at night because yesterday
when I took it as prescribed, I wanted to sleep all day. As I sit here and type
this I can feel little bumps and shakes inside my legs
I do not think I have RLS. If you could suggest a direction for me to go, I
would appreciate it very much.
Hope N.
Louisville, Co.
Medical Reply
I am not sure if you have RLS but it does sound like RLS is very
possible. The way to check is to see if your leg symptoms get better with
movement (like walking) then recur/return to previous levels when back at rest.
If that happens, then you most likely have RLS.
The other symptoms (eye twitch, forearms aching and jaw pain and funny headache
would not be associated with RLS (if that’s what you have).
Quinine does not help RLS but may help prevent leg cramps (but you would need to
drink gallons of it). Iron may help RLS but it usually takes months of oral iron
and ferritin levels should be monitored to make sure that they increase.
Lyrica is a reasonable treatment for RLS but can cause sedation especially when
combined with another sedating drug like lorazepam. Your dose is quite low but
clearly you are quite sensitive to its sedating side effects.
A Reply from Hope
Sent: Sunday, August 28, 2016 1:37 PM
Subject: Re: Information Wanted- Desperately!
The daytime leg symptoms, which occur when sitting for a long period, are fairly
mild. It is at night, later in the evening that they start to progress and when
I lay down that they start to explode.
Hope
Medical Reply
That sounds even more like RLS as RLS follows the circadian rhythm and is worse in the evening/bedtime. Check and see what happens when you walk tonight and that should easily tell you if you truly have RLS.
Sent: Monday, August 29, 2016 12:02 AM
Subject: RLS & chest tightness
What a brilliant website. I ended if you could help me. I have had increasingly
severe RLS every night for the past year now. It has got so bad that I sleep
only a couple of hours at a time and get symptoms in the mornings and evenings
and sometimes throughout the day too. My main concern and reason for my message
is to ask if I should be concerned that I now get very uncomfortable feelings in
my chest when my RLS symptoms are bad. I have heard of RLS occurring in
different parts of the body but don't believe this to be the case here.
I feel a great pressure in my chest as well as feeling generally quite unwell. I am starting to worry that that my heart is not functioning properly and have developed serious health anxiety as a result, which means I am able to sleep even less than before! I'm not sure it has helped finding articles that say RLS could be linked to heart problems, is this true? I'm 29 and absolutely terrified!
Cassie R.
Medical Reply
The issue with RLS causing heart problems is still being studied
but it would take decades at best before the RLS would result in heart problems
(if that were really the case).
RLS can occur in the chest/trunk but it feels the same as RLS in the legs and
would go away with activity such as walking. If that is not the case with your
chest discomfort, then you should see your doctor to further evaluate your chest
pain which is then likely a separate problem.
There are lots of good treatments for RLS but I would try to avoid the dopamine
drugs like pramipexole and ropinirole if possible (they make RLS worse in the
long run).
Sent: Tuesday, August 30, 2016 11:11 AM
Subject: Treatment after Mirapex
I am 49 years old and I have used Mirapex for the past 10 years to treat my RLS.
Although it was very effective in combating my symptoms, over the period I was
obliged to increase my dose from an initial .044 to 1.41mg due to what I now
realize was augmentation.
In April (2016) I was advised by my sleep consultant to discontinue my Mirapex
usage gradually over a period of about a month. She prescribed Lyrica, starting
at 25 mg and told me I could gradually increasing to a max of 150mg daily, to
dovetail with the decreasing Mirapex.
Although I was very anxious about coming off Mirapex, I was totally unprepared
for the appalling symptoms I experienced. It was a huge affirmation to discover
that these would typically be treated with methadone by an expert in RLS care.
Predictably, Lyrica made no appreciable impact.
After three and a half months, I think that my symptoms have now settled down as
much as they are going to. I have very disruptive symptoms in my legs and also
my trunk almost all night every night (though not now quite so awful as in the
early post Mirapex days) and am getting very little sleep - at most 2 to 3 hours
in a night but often significantly less than that as the level of discomfort
means I am unable to stay in bed. I also have symptoms during the day though not
so significant. I stopped taking Lyrica about a month ago as it was making no
difference and I felt muzzy during the day and generally slightly uncomfortable
while on it. My consultant is not prepared to see me until September when she
proposes to start me on a Neupro patch. She has informed me by email that she
will not countenance treating me with opioids.
I have a sympathetic and helpful General Medical Practitioner who by his own
admission has very little knowledge of RLS. Based on information I have amassed
from your answers to patient letters over the years, I asked my General Medical
Practitioner to prescribe oxycodone or methadone. He prescribed OxyContin which
is supposedly a 12 hour release form in 5mg tablets.
I found 5 mg had no impact on my symptoms and neither had 10 mg but 15 mg
provides some (though not complete) relief for about 4 hours. After 4 hours
symptoms reemerge to wake me up but are not nearly so uncomfortable as without
OxyContin. Fortunately I have no adverse side effects so far to OxyContin. At
the same time I am taking oral iron and have raised my serum ferritin from 36 to
44.
I am extremely reluctant to start the Neupro patch for fear of the dreaded
augmentation and another period of torture coming off it down the line. I also
suspect that I suffered from compulsive behavior in the form of internet
shopping while I was on Mirapex and I now realize that I also was 'muggy' and
tired while I was on it. I am not sure if these are possible side effects of the
Neupro patch also.
I live in Ireland and cannot find a medical professional who has a genuine
expertise in treating RLS. It seems that my General Practitioner and I are on a
journey of discovery together and accordingly I am driven to ask you if you
would kindly let me have your view of the following:
Am I foolish not to try the Neupro patch as the sleep consultant suggests?
Would it be worth trying Lyrica again now that symptoms have settled down (I
continued to take it for about 2 and a half months after coming off Mirapex)?
Should I arrange to get an intravenous injection of iron? My General
Practitioner is very reluctant to give this.
Is it worth asking my General Practitioner to arrange for a methadone
prescription to see if the effects would last longer than the OxyContin so that
I might get a full night's sleep and also if I could take a lower dosage of that
drug as 20 mg of OxyContin seems a lot? Needless to say I am not overjoyed at
the prospect of embarking on a prolonged regular use of opioids at the age of
49.
Is there any future in mixing opioids with a dopamine agonist - for example
taking a small dose of Mirapex (counter-intuitive though that feels after the
last few months) maybe two days a week and an opioid for the other days so as to
reduce the risk of developing a dependency on the opioid while at the same time
using the opioid to sustain a break in taking Mirapex if signs of augmentation
emerge or is that totally the wrong direction?
I am terribly sorry to send such a long email. I am in torment and despair,
merely existing at present - not living - I have four children and am not able
to look after them properly. It is so difficult to access knowledgeable expert
care. I have derived enormous support and assistance already from all the
answers you have selflessly furnished to others suffering from this dreadful
condition and cannot adequately express my gratitude to you for making your
knowledge and expertise available in this way. Even if you do not have time to
respond individually to me you have increased my understanding of my condition
and the possible options available enormously. Thank you so very much.
Rachel A.
Ireland
Medical Reply
You have clearly studied the email letters and replies very
carefully and thoroughly and have mostly arrived at the correct conclusions and
questions for your therapy (better than most specialists and likely better than
any doctor currently in Ireland). Let me add that with proper therapy, you
should be able to get excellent relief of your RLS and lead a very normal life.
If you were to use the OxyContin alone, you clearly would need a higher dose.
Although it is claimed to last 12 hours, it is well known that it usually lasts
8 hours or less (which some feel should result in legal actions here in the
USA). A higher dose would last longer but you may need 2 lower overlapping doses
to get full coverage of your RLS symptoms. Generally, doses of oxycodone up to
about 30 mg per day are reasonably safe and have a very low risk of causing
tolerance/dependence/addiction, especially in RLS patients. Methadone tends to
cover the same time period as OxyContin but is a little more potent and
generally is more effective for treating RLS symptoms. The issue you may have is
that it may be difficult to get a methadone prescription in Ireland.
Using the Neupro patch by itself might be helpful but I suspect that you would
need higher doses (than the 3 mg maximum approved dose for RLS) that are more
likely to cause augmentation. In your circumstances, adding a small dose of
Neupro (like 1 or 2 mg) may enable you to decrease the amount of opioids needed
for treatment and is a reasonable consideration (if you are concerned with
keeping the opioid dose as low as possible which may not be necessary if you
keep it within reasonable limits). Compulsive behavior is related to dose, so
you may get away without a recurrence of your internet shopping issues but you
would have to keep a careful lookout for the reemergence of this troublesome
problem. You might also experience the “muggy” side effects of dopamine drugs
although due to the steady levels of the Neupro patch, these types of side
effects are usually reduced.
Adding Lyrica is another reasonable choice. Even though it did not help that
much by itself, it is possible that it may work better in combination with an
opioid (or even Neupro). We often go as high as 300 mg per dose (or even 450 per
single/one dose per day), you clearly should try to keep the dose at or below
150 mg since you suspect that side effects may have resulted from the 150 mg
dose. Whether you need to add Lyrica (and risk additional side effects from
another drug) is a question that only you can answer once you see what kind of
control you keep with higher doses of opioids.
I would not consider adding even a low dose of Mirapex for the long term as you
will most likely develop augmentation sooner or later (most likely quite
sooner). However, in a few cases, I have alternated opioids and Mirapex (every
few days, weeks or longer) with each other with success. We usually stop the
Mirapex as augmentation symptoms become active then change to an opioid.
However, we only do this when there are issues with each treatment if used for
the long term. It does take a higher level of expertise to figure out how to
accomplish this rotation and therefore, there should be compelling reasons to
undertake that type of management.
Your ferritin levels are getting into the more reasonable range but you might do
a lot better after an intravenous infusion of iron. It is most often very
difficult to increase iron/ferritin levels adequately with oral iron. As long as
the proper iron preparation is chosen (low molecular weight iron dextran –
INFeD), iron infusion is quite safe and very effective (and we usually shoot for
levels above 200). However, I can understand the reluctance of your GP who is
clearly way above his head on this disorder and treatment. I doubt any
specialist in Ireland will understand or be willing to give you an iron infusion
for your RLS.
A Reply from Rachel
Sent: Monday, September 5, 2016 10:11 AM
Subject: Re: Treatment after Mirapex
I just wanted to thank you again for your help and encouragement. I was nervous
of increasing my intake of OxyContin but after receiving your email I had the
confidence to increase my dose and I find that 30mg taken in two doses - four
5mg tablets as I am going to bed and two more about two hours later - completely
quiets my RLS - four nights of delicious, restful sleep.
I have made an appointment to ask my G.P. to give me a prescription for the
increased dose (hopefully he will not be too alarmed - I will bring a copy of
your email). I have not entirely given up on the idea of trying a low dose
Neupro patch to enable a lower daily dose of OxyContin but for now I am in
heaven with proper sleep and am experiencing no unpleasant side effects from
OxyContin. My sleep consultant tells me that she can arrange for an intravenous
iron injection at the end of September so hopefully this will help as well.
I had already become a member of the RLS foundation and I have today made a
donation expressing my gratitude for your assistance. Thank you so much - my
whole family is grateful to you as I am now more present and healthy for them.
Your name is synonymous with professional generosity in our household.
Rachel A.
Sent: Friday, September 2, 2016 10:40 PM
Subject: RLS help for children
There is a very strong family history of RLS on my father's side probably 90% of
his side suffers, in some degree, from mild to very severe (my father) so it
comes as no surprise that I too am heading down that path. I have a teenage
daughter, she's 16, and is beginning to have symptoms of RLS. She actually has
since an earlier age but it's now becoming problematic for her and is affecting
her sleep at least 2-3 times per week. One , it's genetics unfortunately for
her, but also she is taking Zoloft for depression and has been for approx 2
years. She needs the antidepressants but I think this is causing her RLS to
worsen at a much younger age.
What do you recommend we try for her to get her some relief ? Considering her age and the fact that she suffers from depression so we need to keep that medication on board. Not really keen on the idea of her taking anything I take, but I'm at a loss for what to do for her. My doctor thought maybe we should try some more natural, herbal type remedies to start with. What would you recommend ?
Julie
Medical Reply
Treating children is always more difficult than treating adults
and much more care needs be taken.
Unfortunately, natural herbs, vitamins, etc. really have no benefit for RLS and
should not be considered (a waste of time). The first thing that should be done
is to check your daughter’s ferritin and iron levels. If they are low (ferritin
less than 50-75, then iron supplementation may be very helpful.
If iron therapy is not the answer, then I would suggest a trial of gabapentin
starting with a low dose of 100 mg in the evening and increasing the dose every
week until RLS symptoms are relieved (or side effects which are usually sedative
related) occur. Rarely, gabapentin may worse depression but you can keep a eye
out for this problem.
Another alternative might be a trial of the antidepressant Wellbutrin as this
drug does not worsen RLS like Zoloft. If the Wellbutrin works well and enables
the elimination of the Zoloft, the RLS might be much easier to control.
Sent: Monday, September 5, 2016 6:32 AM
Subject: Restless Legs Syndrome help
I have recently been refused my pension claim on grounds of insufficient
evidence of continued impairment until normal retirement age, (Age 67 in
Northern Ireland). I have furnished you with my medical history previously so
will not repeat it at this stage. I am seeking support that Restless Legs
Syndrome is a debilitating condition that often responds poorly to treatment,
(as in my particular case). The severity of my condition impacts severely on the
other conditions I suffer, (Myalgic Encephalopathy, chronic pain, Insomnia and
the resulting anxiety and depression), limiting the treatments available to me
and rest required to heal.
I would appreciate any assistance you can provide. I admire you in your
dedication to helping others and thank you very much as I am sure you have heard
many times it is frustrating having a condition so poorly understood and
treated. To be understood is fantastic!
Stephen
Medical Reply
The issue is that since most doctors don’t even understand how
disabling RLS can be, it is difficult to expect government agencies and doctors
to do so. What we suggest is that you use the consequences of RLS as the reasons
for your disability. The anxiety, depression, insomnia and fatigue are the
typical results of inadequately treated RLS and those should be the basis for
your disability.
There is a chapter in my 2006 book (RLS: Coping with your Sleepless Nights) that
covers obtaining disability for RLS. Even though this is for patients in the
USA, it is likely quite similar and relevant for other countries.
Let me just add, that with proper treatment (not always easy to find), you
should be able to get excellent relief from your RLS and possibly not need
disability.
Sent: Monday, September 5, 2016 9:06 PM
Subject: Quitting Mirapex
My father is 71 years old, and has RLS and neuropathy. He has been taking
Mirapex for nearly 2 years for his RLS, and has recently experienced severe side
effects. I won’t mention all of them, but they are numerous.
The main reason for concern is his total loss of strength and trouble walking
(especially down stairs). He saw his doctor this week, and we are trying to get
off of this drug. This doctor does not seem well versed in RLS, nor the serious
side effects/withdrawal symptoms. He suggested weaning off the drug by taking it
every other day, and then eventually every third day, until he can then try
Ropinirole (which sounds like the same family of drug and seemingly the same
terrible side effects).
Will he be able to successfully stop using Mirapex without the aid of something
to help him through the terrible withdrawal symptoms? If not, what should he be
doing? He is in terrible discomfort, and is weakening before my eyes.
Also, would medical marijuana help at all with withdrawal symptoms, or at least
give him some relief for a few hours/allow him to get some sleep? Would it be in
any way dangerous for him to try it while attempting to quit the Mirapex?
I saw your website and learned quite a bit. It seems that many doctors really
have little idea about RLS and the serious problems that occur from these drugs
they prescribe.
Erik B.
Medical Reply
Once a patient is on a dopamine agonist like Mirapex or Requip,
it is very hard to stop them. What your father can expect if he stops the
Mirapex is 10-14 days of marked worsening of his RLS symptoms (and likely no
sleep). The RLS will likely get somewhat better after the 10-14 days but he
still will need treatment for his RLS.
I would not suggest trying Mirapex as it will likely cause the same issues as
Mirapex. A change to Neupro might be helpful but it still has the potential to
cause the same Mirapex side effects.
We typically use an opioid such as methadone or oxycodone to get patients off
Mirapex. This usually works very well and makes the transition off Mirapex go
quite smoothly. However, this does take an RLS specialist who has experience
with performing that transition. There are not many doctors who are willing to
prescribe opioids for RLS and have experience doing so.
As far as the use of marijuana, it can be helpful for bedtime RLS but only last
a couple of hours for providing RLS relief. I am not sure how much RLS relief
marijuana may provide for the withdrawal period from Mirapex and opioids may
still be necessary to provide sufficient relief. Marijuana is better for mildly
RLS symptoms and since it has to be inhaled to relieve RLS symptoms, it is even
harder for me to recommend for treating RLS.
A Reply from Erik
Sent: Tuesday, September 06, 2016 6:42 PM
Subject: Re: Quitting Mirapex
Should he continue to gradually wean off the Mirapex, under the guidelines I
spoke about below, or would it be better to stop using it entirely? Will he
hopefully start to get some relief in the 10-14 day span you estimated with the
gradual reduction? The nights and following days he skips have been extremely
difficult.
If we can try Neupro, should he wait until the “detox” period of Mirapex is
complete, or just substitute right away? I’d really like to see him get off of
the withdrawal/side effects before starting any new remedies, so we can
determine how bad the RLS is in isolation. I just found out that he began upping
his dosage for the last few months because the previous amount wasn’t having the
desired results. This is when his overall health and condition really began to
deteriorate quickly.
We will begin searching for RLS specialists in the area, but may not find any.
We are in upstate NY, and my mother didn’t think there were any in close
proximity. If we find one we’ll suggest the possibility of using the opioids
that you suggested to help ease the transition off of Mirapex.
Erik B.
As far as stopping Mirapex, it depends upon the dose whether tapering or cold turkey is the best approach. The same applies for a switch to Neupro (only works for low doses of Mirapex).
A Reply from Erik
Sent: Wednesday, September 07, 2016 1:18 PM
Subject: Re: Quitting Mirapex
He was taking the .125 mg tablets once a day. The last couple of months he began
taking two tablets on some days.
Erik B.
Medical Reply
I have most of my patients who are taking between .125 mg and
.25 mg of Mirapex stop the drug cold turkey. If problems occur (other than a
marked increase in RLS symptoms), then I would taper off the drug slowly but
that rarely happens at those doses. However, the patient should transition with
an opioid to make this occur almost painlessly if done properly.
An alternative would be to transition to Neupro by starting at 1 mg/day for a
week and increasing as needed weekly to a maximum of 3 mg. This transition may
also be done cold turkey but small amounts of Mirapex may be added until the
correct dose of Neupro is found. This takes a little expertise also.
All this is much better accomplished with a doctor who has done this in the past
and has enough experience and knowledge on how to adjust the medications if
problems occur.
Sent: Tuesday, September 13, 2016 1:06 PM
Subject: Needing to get off 4 mg. of Requip nightly
I have been taking Requip, as prescribed by my doctor for the past 10 years. I
just had to go from 3 mg. to 4 mg. per night and even with this increase, wake
up several times per night. I need to get off the Requip and am afraid of taking
hydrocodone or opioids to do so. What should i do to get off the Requip and not
get addicted to something else? Ultimately, I'd like to be on Horizant or
Lyrica.
Which is better long term? How long would I be on Methadone if I take it to get off Requip? Should I reduce the Requip dosage gradually or go off cold turkey?
Pam H.
Medical Reply
You are clearly suffering from augmentation (and it sounds like
you already are aware of this issue) from taking the Requip.
You need to get off the Requip which will markedly increase your RLS symptoms
for about 10-14 days before improving considerably. There are some specialists
who taper patients off the Requip (over about a week or so) but you can expect
such severe symptoms for 10-14 days that sleep may be impossible. After that 10
day period, it is possible that Horizant of Lyrica (both are equally good in the
long term) may be adequate to control your RLS symptoms but opioids may still be
necessary.
For most patients in your situation, we transition from Requip to an opioid
(usually methadone or oxycodone) which may completely eliminate the misery from
this change. Most patients do have to remain on a low dose of the opioid
indefinitely but addiction is rarely a problem.
Sent: Wednesday, September 14, 2016 1:49 PM
Subject: Augmenting on pramipexole at .125 mg in 3 weeks?
Pramipexole History
On 8/16, I started pramipexole .125mg for restless legs syndrome (RLS). On 9/6,
it stopped working. On 9/9, my general neurologist increased the pramipexole
dose to .25 mg. The RLS was not affected at all. I stopped taking it on 9/12.
The RLS continues.
My Questions
1. Did I augment on the pramipexole in just three weeks and at the low dose of
.125mg?
2. Am I experiencing "withdrawal" from the pramipexole now?
3. Is there any chance that my inconsistent dosing of oxycodone is causing me to
experience RLS as a withdrawal symptom?
4. What medications or combo would you suggest I try knowing I suffer from
depression?
Other Medications
* 2.5-5mg oxycodone up to three times a day with six hours between doses for
back pain,
* Claritin for sneezing "attacks",
* .5mg clonazepam 1-2 nights a week when I'm really desperate for sleep (it
works sometimes and I can get 3-5 hours sleep which is better than my normal
2-2.5 hours),
* 4,000 IUs Vitamin D3 (I have multiple sclerosis) and
* Aleve or ibuprofen 4-5 times a week for headaches/back pain.
RLS Medication History
I have familial RLS which started in 1987. In 1994 or 1995, I was prescribe
sinemet, which of course caused augmentation. I then took gapapentin, more or
less successfully, until about 2001, when I got pregnant. I tried it again but
it didn't work well so my neurologist then prescribed clonazepam. I was
eventually taking 3mg a night until it stopped working. I tried gapapentin again
but it caused pitting edema and added to my depression.
RLS History
My RLS started with a two night mild bout of a tugging sensation in my legs,
relieved by movement, in 1987. Before the pramipexole, the RLS has progressed a
"small bugs biting my bones" in my legs, arms, trunk, and back of my neck. I
have it anytime I am not moving my legs (and, sometimes, I can still feel it
faintly when I'm moving). It's worse in the evenings but this past year I
started getting it in the morning, too. In the past, I've gone for months
without it. Now, I have it nightly.
Activity, Nutrition, etc.
I have increased my physical activity level in the past two months - walking 30
minutes a day in 10 minute increments (rebuilding stamina and strength from MS
effects) and have eliminated all sugar caffeine, and simple carbs from my diet.
I do not drink alcohol or smoke.
Susan K.
Madison, WI
Medical Reply
It is certainly possible to get augmentation within 3 weeks and
I have even seen it occur sooner than that. However, your use of oxycodone for
back pain make it very difficult to decide whether you truly experienced
augmentation. One of the first (and most typical) signs of augmentation is an
earlier onset of RLS symptoms by a few hours and this might easily be obscured
by the oxycodone (especially if your use of oxycodone varies from day to day).
There is really no concern about you withdrawing from pramipexole as when this
occurs (especially after augmentation has occurred), there will be a marked
worsening of RLS symptoms for about 10-14 days (another reason why it is less
likely that you experienced augmentation). Either way, I do not suggest using
pramipexole or its cousin ropinirole as they cause augmentation sooner or later
in most RLS patients so it is better to avoid them.
Oxycodone only lasts 4-6 hours per dose (even less with very small doses like
2.5 mg) so you might be experiencing breakthrough RLS symptoms when the
oxycodone wears off.
If not for your problems with gabapentin, I would suggest Horizant or Lyrica but
they may cause similar issues (and produce depression). Therefore my suggestion
would be to consider a longer acting opioid such as methadone or even OxyContin
to smooth out your RLS control. You should also have your serum ferritin checked
and if not more than 50-75, iron supplementation may be beneficial.
A Reply from Susan
Sent: Wednesday, September 14, 2016 10:07 PM
Subject: Re: Augmenting on pramipexole at .125 mg in 3 weeks?
My neurologist told me today to increase the pramipexole to 0.375 mg and he's
referring me to a UWHealth sleep medicine specialist. My last dose of
pramipexole was Monday night. My legs are crazier than they were before I
started it and than they were when it stopped working. 😞.
My ferritin level is 117.
I suspect I just need to find the strength to deal with things until I see the
Sleep person. I'd be very surprised if my neurologist would prescribe methadone
or oxycodone. My primary care doctor is the one who prescribed the oxycodone
so...
Susan
Medical Reply
It does sound more like augmentation in which case, increasing the pramipexole dose (which is what most non-RLS experts would do) is the exact opposite of what should be done. There is a reasonable chance that higher doses of pramipexole would provide temporary relief from your RLS symptoms but sooner or later (like much sooner) you would be back in augmentation but with a more severe (and more difficult to treat) problem.
Sent: Wednesday, September 21, 2016 8:51 PM
Subject: oxycodone tolerance and/or dependence
How can I tell if I reached the level of no return in regards to oxy tolerance
and/or dependence?
I been using (using is a bad word here) Oxy for about eight years for my RLS,
The doctor had me try all the other drugs for RLS but none worked, some even
made it worse. I take 1 to 3 10mg pills a day as needed, however there are times
when I take two or three at once. There are some days and/or nights I don't take
any because my RLS isn't bothering me.
After such a long time suffering with RLS I kind of know my body signals. When
RLS is really going to be really bad or just a slight nuisance, I kind of know
what the dose should be.
What ever the dose is, it usually starts working in about 30 minutes.
I can remember when I first took Oxy there was a euphoria feeling but about two
to three days into taking Oxy that feeling disappeared. When I go into the
hospital for a treatment or surgery, I have to remind them of my long time use
of OXY, which would explain tolerance.
In any case I am not wired like a depend person is. Of course when it comes to
sugar or candy, well that’s another story.
Jim W.
Medical Reply
Although there is significant variation in what dose triggers tolerance/dependence in any given person, most can take 30 mg per day (sometimes even up to 40 mg/day) before these problems become a concern. Taking the opioid intermittently (as you have been doing) also quite significantly reduces the risk of augmentation.
A Reply from JIm
Sent: Wednesday, September 21, 2016 10:54 PM
Subject: Re: oxy tolerance and/or dependence
Why has oxy been chosen by doctors to stop or at least minimize RLS? There are
other drugs, like Gabapentin for anti-epileptics, Mirapex, Clonazepam, Requip,
and Sinemet, to name a few. I suffered a long time until the doctor and I hit on
Oxy. Not only does Oxy work for me but I don't have to take a pill every night
like the others I mentioned. With Oxy, I only take it as needed. The doctor
started me on Percocet. I was worried about the Tylenol in it and I asked for
just oxy.
Oxy is for pain, what's the deal that it works for RLS. For me, I considered that Oxy may just be acting like a placebo, since I am taking it for many years. So it doesn't effect pain, and I don't get high... I don't know what I'd do if the Gov stopped took it off the shelve.
Placebo or not, Oxy does the job.
Jim W.
Medical Reply
I can assure you that oxycodone does not work through the
placebo effect (although there can always be a component of placebo for any
effective medication) as it is one of the most effective treatments for RLS (as
are most all the other opioids). Since there are many other drugs that can be
effective (including some but not all the ones that you have listed) for many
RLS patients, we typically do not start with opioids but use them when other
drugs are not helpful.
Tylenol does not help RLS so we try to prescribe “pure” opioids that do not
contain Tylenol (that only has a small risk not balanced by any benefit for
RLS).
We do not know how any RLS drug actually treats RLS symptoms so
oxycodone/opioids are no different.
Sent: Friday, September 23, 2016 12:13 PM
Subject: RLS and Flonase
Is it possible to take Flonase (a nasal spray) while having pretty advanced RLS (augmentation, also in arms, trunk)? My allergies this spring-summer-fall are very bad. I take Mirapex 1.5 mg and hydrocodone 7.5 mg, once at night, around 8:00, and am asleep by 11 or so. My question is about Flonase for my allergy symptoms, runny nose, itchy eyes, and mucus, very much of it.
I’ve never taken any allergy medication, but at the present time, I am part of a choral group and am supposed to sing in our concert soon, and I am unable to sing because of being so hoarse. Will Flonase nasal spray cause my (already bad) RLS to be worse?
Gyana P.
Medical Reply
Flonase is fine as are Claritin, Allegra and Zyrtec.
Sent: Friday, September 23, 2016 10:19 PM
Subject: Upper Body Discomfort
I am taking 15 mg/day methadone and 300 mg/day pregabalin for the restless leg
syndrome, and I am also taking 20 mg/day temazepam for insomnia 5 days/week
only. The restless leg syndrome is not bothering me much, so I am thinking I
should reduce the dose of methadone and pregabalin because perhaps I am taking
more than necessary.
But, when I reduce the daily dose of methadone, on the next day about
11:00 am I begin to experience a pressure or nervous tension in my shoulders,
upper arms, and chest that is very disturbing and becomes unbearable. It
disappears within an hour when I take the next 5 mg tablet of methadone. Is this
discomfort perhaps an effect of the methadone or of the temazepam? I don’t know
what it is or how to treat it.
Stephen C.
Medical Reply
Although you are on a reasonable dose of methadone and most people do not get dependent on opioids at that dose, you may be experiencing a little withdrawal. What you may try doing is slowly decrease the earlier doses of methadone (during the daytime you can walk or other activities to treat your RLS if symptoms increase with lowering the dose). You can try decreasing the 5 mg dose to 1/2 tablet which should reduce any withdrawal symptoms. If that works, you can continue further slow reductions in your dose.
Sent: Monday, September 26, 2016 4:19 AM
Subject: Wellbutrin
I was on 75mg lyrics and added 50mg Zoloft but because of the Zoloft side
effects I am now off Zoloft and my RLS is back. My doctor just tried adding
Lexapro 5mg but that does not seem to help and may actually be making my RLS
worse. I am wondering if you know anything about adding Wellbutrin?
Susan J.
Medical Reply
Lexapro and Zoloft are both SSRI drugs and would be expected to have the same bad effects on RLS. However, Wellbutrin should not affect your RLS and would be a good choice if it helps your depression (it can sometimes make anxiety worse).
Sent: Tuesday, September 27, 2016 1:44 AM
Subject: RLS and drugs
I am writing to you because I experience pain in my toes. Legs and thighs. It
all started when I tried a medication called Nozinan (a psychiatric drug similar
to promethazine). I am wondering if the medication has triggered RLS symptoms. I
only tried it one time and it was 20 mg before bedtime that was 6 days ago and
since then I experience the legs symptoms
Currently I am on these medications:
Zyprexa 5 mg
Cipralex 10 mg (currently tapering off)
Lorazepam 3 mg (currently tapering off)
What do you think. Is this restless legs I experience or what. I also have limb
movements when I try to fall asleep but that I have struggled with for two years
now. The lorazepam takes care of the limb movements but my doctor want me off
that medication.
Cengiz S.
Medical Reply
If your discomfort in your legs is associated with an
urge to move your legs when at rest and is relieved by movement (like walking),
then your symptoms may very likely be due to RLS.
Nozinan is a very potent trigger for RLS so it is certainly possible that it may
have brought out RLS symptoms. However, Zyprexa and Cipralex both tend to worsen
RLS so it may also be that the combination of medications may have triggered RLS
symptoms (if that is what you actually have).
Lorazepam does not treat RLS but does help RLS patients fall asleep.
Sent: Wednesday, September 28, 2016 10:05 AM
Subject: Pregabalin (Lyrica) dose for RLS?
What is the maximum dose that you prescribe Pregabalin in. I know the
recommended max dose is 300 mg but do you go higher?
I am on the max dose and still have 24/7 RLS. I cant take opioids and I'm trying
not to take the dopamine agonists due to augmentation.
Laura P.
Medical Reply
The maximum daily dose for pregabalin is 600 mg, usually divided into 2 doses of 300 mg. However, for one dose, we can go up to 450 mg as long as the daily dose does not exceed 600 mg.
Sent: Thursday, September 29, 2016 5:46 AM
Subject: Restiffic: Foot wrap
The newest RLS treatment, explained as follows, " new pilot study published in
The Journal of the American Osteopathic Association reported that an adjustable
foot wrap is 1.4 times more effective in treating restless leg syndrome (RLS)
than traditional pharmaceutical therapy. Authors at Lake Erie Research Institute
in Pennsylvania published this study."
Is there any feedback on this? I've seen nothing relating to it here, or at the
John Hopkins site. It has received the FDA approval at a Level 1, but does not
have code numbers for Medicare and runs about $300.
Diane D.
Medical Reply
The Restiffic device was FDA approved based on one small
study with only 30 subjects that did not use a control group (they took their
subjects/patients off the device for a week in the middle of the study and used
that week as the control). Based on this one study, it is quite difficult for me
to assess whether the device actually works or simply has a very good placebo
response.
Furthermore, I have not had any of my patients try this device so far. I cannot
say that the device does not work (or is helpful), but I suspect that it will
not be very helpful for most RLS patients. There are some anecdotal reports on
the Restiffic company's website from patients who benefited from the device (and
quite a few who did not benefit) but again, it is hard to rule out the placebo
response as being responsible for its benefit.
Sent: Monday, October 10, 2016 12:06 AM
Subject: Pramipexole detox?
Do you know if it is possible to detox your body from Pramipexole? I have been
on this medicine at the lowest dosage for several years and only recently I
started experiencing augmentation. I then quit from it with the help of
Tramadol. I now only take one Tramadol in the evening and seems to work fine. I
was wondering if after a period of time (detoxing) I could go back to
Pramipexole and enjoying a single low dosage pill per night as I used to do in
the past for years. So the question is: based on your experience is there a
minimum time required to stay away from this medicine in order to let the body
forget of having ever taken it? I guess this might be dependent on the body
size. And if yes, can I experience again the same efficacy's time before
augmentation will reappear?
Btw the reason why I don't like staying on Tramadol is
that both my GP and neurologist suggested to use this medicine only for a short
period of time, basically just to support the exiting from Pramipexole.
Luca B.
Medical Reply
Although we don’t call it “detox” the augmentation
effects of being on pramipexole take about 10 days or so to go away once the
drug is completely stopped. However, restarting the drug will quickly get you
back to the same augmentation problem. For some it may take only a few days
while others may go for weeks or months (especially if the drug is restarted at
a lower dose than previously) before the augmentation process recurs. We
therefore recommend that once augmentation has occurred, the patient should not
go back on a short-acting dopamine agonist drug again. The exception would be
for patient where alternating drugs (every few days to weeks) may be medically
indicated (so that the drug can be stopped before augmentation can recur).
However, it is correct that once pramipexole is stopped and the augmentation
process has resolved, restarting the drug should be very effective (even at a
lower dose) to control RLS symptoms until augmentation recurs).
There is no reason that tramadol can’t be used indefinitely even after the
augmentation process has resolved. I have patients who have been on a small dose
of tramadol for over 25 years and are still getting excellent control of their
RLS.
Sent: Thursday, October 20, 2016 1:30 AM
Subject: Can you help?
I recently had pneumonia, as a result of all the meds I got thrush and was given
fluconazole. They made me ill and since then I've had restless legs. It's there
all the time, worse at night and it's driving me crazy. I had previously been on
amitriptyline for fibromyalgia but stopped it when I went in to hospital. My
doctor has started it up again and it's helping me sleep but my legs are bad
during the day. Doctor has now given me Prozac as I'm getting really depressed
but I read thus can make my legs worse.
Scott
Medical Reply
It is not clear why fluconazole would trigger RLS as it
typically has no effect upon this disease. However, amitriptyline tends to
worsen RLS unless it puts you to sleep and keeps you asleep all night (you can’t
obviously feel RLS symptoms if you are asleep). Prozac also worsens RLS so be
careful with that drug.
There are lots of good treatments available and you should discuss starting a
drug like Horizant with your doctor.
A Reply from Scott
Sent: Sunday, October 23, 2016 5:33 AM
Subject: RE: Can you help?
Can you tell me, would you advise someone who has restless leg syndrome and has
severe depression to take Prozac for the depression.
Scott
Medical Reply
Most all the antidepressants worsen RLS (please checkout and download our free RLS Medical Alert Card that lists all the drugs that worsen RLS and alternatives). That unfortunately includes Prozac. The only significant antidepressant drug that does not worse RLS is Wellbutrin. If that does not help you (or causes side effects) then you can try Prozac but be aware that it often worsens RLS and you may require additional RLS treatment.
Sent: Wednesday, November 02, 2016 5:55 AM
Subject: Horizant for RLS?
My neurologist took me off pramipexole .5 mg total daily dose when I developed
tolerance or augmentation. This was done without tapering and pram replaced with
600 mg Horizant. Of course, I went through terrible withdrawal with no sleep for
a month. I was only on Horizant about 6 weeks and complaining that I still
wasn’t sleeping well. She changed me to Neupro patch which was upped eventually
to 3 mg. I was still supplementing Neupro with Ambien, etc.
I have taken a drug holiday by weaning off Neupro, surviving on sleeping pills
and 5 mg hydrocodone left over from old surgery. My question is this: should I
try Horizant again as it would also treat the neuropathy I have in left foot? Is
it possible that it didn’t work before because of the DAWS I was experiencing at
the same time? And, if it doesn’t completely work, can it be supplemented with
either Neupro or low dose hydrocodone?
Henry W.
Medical Reply
You are asking reasonable questions. I doubt the issue
was DAWS (Dopamine Agonist Withdrawal Syndrome) but rather just the usual
worsening that we see with stopping a dopamine agonist like Mirapex
(pramipexole). The Horizant is a reasonable drug but typically not up to
treating RLS once augmentation has occurred and Mirapex is stopped. It is
possible that the combination of Neupro 3 mg (don’t’ go any higher) and Horizant
600 mg may control your RLS.
If not, you could add an opioid which will almost definitely control your RLS.
The only issue with hydrocodone is that it is always combined with another drug
(like Tylenol) which does not help RLS so you get needless exposure without
benefit from the Tylenol. We typically use pure opioids like oxycodone or
methadone. Most likely, the opioid alone (usually at low doses) will control all
the RLS symptoms. It can be combined with either Neupro or Horizant if needed
but often the dose of the opioid is so low that additional medications are not
necessary.
Sent: Friday, October 21, 2016 3:05 PM
Subject: Even when standing...
Have you had any experience with anybody experiencing that "creepy crawly"
feeling even when standing or walking around? This started in pregnancy and has
continued. Could you direct me as what this might be? This as stumped my sleep
specialist as I don't think he has heard of this and he is one of the best of
the best. I highly regard him, but I do not know what to do. Any ideas?
Jamie
Medical Reply
The issue is not whether you can feel the "creepy crawly" sensation when standing or walking but rather does walking improve the symptoms (at least somewhat). If symptoms lessen with walking then RLS is more likely. Also, if you have the urge to move your legs, walk, or rub your legs with the "creepy crawly" sensations, then RLS is also more likely.
Sent: Sunday, November 06, 2016 1:01 PM
Subject: RLS and nasal congestion?
I’m a 69-year-old retired male. I have had Restless Leg Syndrome for many years.
For a long time I’ve been taking a Pramipexole 1.5mg Tab each night a couple of
hours before I go to sleep to treat the symptoms of RLS. It works pretty well;
it’s not perfect, but my legs settle down enough so that I can get to sleep. If
I miss a dose, my legs will drive me crazy all night and I won’t sleep at all.
I’ve let my prescription for Pramipexole run out a couple of times and it was
very bad until I got a refill. The RLS doesn’t usually bother me in the daytime
– or at least I can live with it. I don’t use alcohol, cigarettes, or caffeine,
or any illegal drugs.
My problem is that I get terrible nasal congestion about an hour after taking the Pramipexole. It goes away eventually, but it’s severe for several hours. I’ve treated the congestion for years with Afrin-type nose sprays (which help a lot) and nasal strips, but I know Afrin isn’t a good long-term solution. I have to stop taking it every so often because my nasal passages become inflamed. I’ll just suffer through the congestion until the inflammation goes down and then start using the Afrin again.
I take other medicines, but I’m certain the congestion is from the Pramipexole (I have the symptoms when I only take Pramipexole and I don’t when I take all my other medications except for Pramipexole). I’ve researched Pramipexole, and while nasal congestion is not a common side-effect, it has been reported by other patients.
Is there an alternative to Pramipexole that might work as well (or better) to treat the symptoms of RLS that won’t cause me to suffer from nasal congestion?
Paul Z.
Medical Reply
Nasal stuffiness is a known side effect of pramipexole and other dopamine agonist drugs. If you are to stay on this medication, then other solutions such as a steroid nasal spray, (Flonase, Nasonex, etc.) may be a better choice for the long term. Other choices (by prescription only) are Astelin or Atrovent nasal sprays.
However, you are on a very large dose of pramipexole which is very often associated with augmentation (a worsening of RLS due to taking a dopamine agonist drug). We usually recommend getting off the dopamine agonist drug at this point. You have already found out that stopping the dopamine drug causes a marked worsening of RLS symptoms (which may last up to 10-14 days before calming down somewhat) making it very difficult to stop the drug.
Typically, a potent opioid (oxycodone, methadone) is needed to accomplish the transition off pramipexole. This requires some expertise and most doctors do not know how to do this and don’t like prescribing potent opioids. However, if you can get off pramipexole, your RLS will be much easier to control and you won’t have to worry about treating your nasal problems.
A Reply from Scott
Sent: Monday, November 07, 2016 6:57 AM
Subject: RE: RLS and nasal congestion
You have given me suggestions for how to deal with the nasal stuffiness or,
alternatively, how to transition off of pramipexole. You recommend that I
transition off of the pramipexole, and I think I’d like to do that. I’ll talk to
my doctor about giving me some medication to get me through the transition
period. What do you suggest I use to control the RLS after I get off of the
Pramipexole?
If I read the article you sent me correctly, you recommend rotigotine or an α2δ ligands to treat RLS. Are those treatments likely not to have the same side-effects and likely not to cause augmentation? I’m not really sure what an α2δ ligand is, or whether it is something my doctor can prescribe. Which of the two recommended treatments would be better?
Paul Z.
Medical Reply
As noted in my email to you, potent opioids are typically necessary to treat the transition off pramipexole. Since your dose of pramipexole is very high, changing to a long acting dopamine agonist like the Neupro patch is not advised (we only go up to Neupro 3 mg which will not cover that high dose of pramipexole) and α2δ ligands may help only marginally. Not using opioids in this situation is possible but will make the experience quite uncomfortable (you may not sleep for 2 weeks or so).
The α2δ ligands are Horizant, gabapentin and Lyrica. They may be helpful once you are off the pramipexole to lower the dose of the opioid. Again, this transition most often requires a physician with some expertise and experience with treating RLS augmentation.
Sent: Thursday, December 01, 2016 6:59 PM
Subject: Question regarding augmentation and Mirapex
I have had RLS for as long as I can remember with the symptoms necessitating
medication about 15 years ago. I have taken Mirapex for 15 years. The past year
or two I have noticed my symptoms worsening. I consulted a neurologist who just
increased the dose of the Mirapex even though I questioned him about it. I have
been taking 0.25mg three times per day for the past two years. The RLS symptoms
have worsened so that I consulted a different neurologist in hopes of treating
the augmentation.
He ordered a serum ferritin level which was 5.9. I have been taking ferrous gluconate for the past week. This neurologist also started me on 300 mg of Gabapentin per day with instructions to take one or two as needed. I have been taking the gabapentin for 21 days. I have begun tapering off the Mirapex. I have been taking only one 0.25 mg for the past two days. The symptoms have become almost unbearable. I have not slept at all the past several nights.
During the day after about 3pm, I have been walking
constantly. I also purchased the Relaxis device. Unfortunately, it does not seem
to work at all. I am not scheduled to see the neurologist until January. I am
going to try to see if I can get an appointment sooner. However. can you give me
some advice as to what I should ask him to prescribe to help me? I am desperate
and miserable.
Sherry G.
Medical Reply
Unfortunately, most neurologists and other specialists
(usually sleep specialists) who see RLS patients know very little about
augmentation and how to treat it (typically, RLS patients like you tend to know
a lot more than their doctors). The first instinct of neurologists when
confronted with augmentation is to increase the dose of Mirapex just as they
would do in Parkinson’s disease. Although this would help for a while, it merely
adds more fuel to the problem of augmentation and eventually your RLS will
continue to worsen.
Tapering off the Mirapex will provoke a marked increase of RLS symptoms (as you
have already noticed) and the gabapentin and the Relaxis pad are not usually
adequate (at this point) to treat these withdrawal RLS symptoms. Once you are
off the Mirapex completely for about 10 days, the RLS will start to get better.
However, you may not be able to sleep at all or bear the severe RLS symptoms. We
typically recommend a potent opioid (oxycodone, methadone) for that transition
which can often make it painless. It does take some experience and expertise to
accomplish the transition off Mirapex and most doctors (including the
specialists) are either not comfortable or willing to use opioids.
Once you are off the Mirapex for a month or two, gabapentin (or better Horizant
or Lyrica) and the Relaxis pad may be more effective and enable a reduction or
elimination of the opioid.
A Reply from Sherry
Sent: Thursday, December 01, 2016 8:13 PM
Subject: Re: Question regarding augmentation and Mirapex
Since I am already experiencing such severe symptoms, would you advise that I
just stop the pramipexole totally instead of tapering the last dose? Also, I
have Hydrocodone from previous surgery. Would taking one or two of those help
until I can see the neurologist ( if I can get an appointment)? Do you have
patients who travel from other states (Illinois)?
Sherry G.
Medical Reply
Some experts like to taper the Mirapex (over 1-2 weeks)
when starting with high doses (.75 mg is a moderately high dose) while others
(like me) tend to have patients go cold turkey and then back off if trouble
occurs (which is quite infrequently).
Hydrocodone is not as potent as oxycodone or methadone but still might be
helpful but you might need more than one or two per day. However, when you run
out of it, you may not be able to get it replaced and that of course may present
a big problem. In addition, hydrocodone always comes attached with another drug
(usually Tylenol) which does not help RLS so may only cause side effects without
any benefit. This is not a big issue for the short term but is why I don’t use
that drug for long term treatments (the hydrocodone can be compounded in a pure
form at a compounding pharmacy but that can be expensive).
Sent: Wednesday, December 07, 2016 8:18 PM
Subject: Severe RLS
I am a 36 year old female with severe RLS (in my whole body). I have taken
methadone for about 6 years, 5 mg at night. I had surgery last week and was
given Percocet for post operative pain. After about 4-5 days I started having
really severe rebound symptoms of RLS as soon as the Percocet started to wear
off. What is happening and what should I do?
The neurologist that I have now is not the original
doctor that started me on methadone and makes it known that she is uncomfortable
with prescribing it but knows that I have tried every other medicine designed to
help RLS with no success.
Please help! I feel like I am going to lose my mind!
Melissa Y.
Medical Reply
The issue may be that Percocet is not as potent as
methadone so if you had Percocet 5 mg (the second number is simply the
acetaminophen or Tylenol amount) it may only be equal to about methadone at 3
mg. The other problem is that methadone typically lasts about 8-10 hours while
Percocet lasts about 4-6 hours. Therefore, the Percocet would not cover your RLS
as well or as long as the methadone creating your rebound of RLS symptoms.
You could change to OxyContin 10 mg as that lasts longer (about 8 hours even
though it is advertised to last 12 hours) but that would likely be much more
costly as it is brand name only. The best solution would be to get back on the
methadone. Furthermore, the acetaminophen portion of the Percocet does not help
RLS so can only cause side effects if used for long term without providing any
balancing benefit.
A Reply from Melissa
Sent: Friday, December 09, 2016 11:24 AM
Subject: Re: Severe RLS
Well, the weird thing is, I quit the Percocet and started the methadone again
and it's not working. I started methadone probably 5 years ago and it has always
worked. But the Vicodin that they gave me for pain instead of Percocet is
working, just for a shorter time. I know that Vicodin is not close to the
strength as methadone.
Melissa Y.
Medical Reply
That is a little strange since the methadone should work well now if it worked well in the past (and typically, methadone is one of the most effective opioids for treating RLS).
Sent: Friday, December 09, 2016 11:35 AM
Subject: RLS or PLMD?
During surgery whilst under anesthetic some people have been told later that
their RLS was severe. I would consider this PLMS as they are "asleep "and so the
movements are involuntary.
Which would you class these movements whilst under
general anesthetic as RLS or PLM?
Kim W.
UK
Medical Reply
You are correct. It could only be PLMS.
RLS can only be present while patients are awake and can be aware of their
symptoms. It is no different than a headache or back pain…you must be awake to
perceive the symptoms.
Sent: Friday, December 16, 2016 4:29 AM
Subject: Advice needed for severe RLS
I am 48 years old. Unfortunately I have spent the last 2 months suffering from
RLS and PLMD while awake. I believe this is augmentation from years of Mirapex
and then attempting Requip at a dose of 2.5 milligrams.
I saw a young neurologist who decided to put me on Lyrica. She started it at 50
and increasing my dosage by that much a week. At the same time I am going down
by .25 milligrams of Requip every week. She does not believe my movements are
from Restless Leg Syndrome or Periodic Limb Movement disorder but suspects
perhaps a seizure disorder. My symptoms had been improving but have started to
revert again.
Thursday I have surgery for stage 2 Breast Cancer. This is December 22. I am
quite alarmed at this point because reverting to severe sleep deprivation will
adversely affect healing. I am also scheduled for a month of radiation
commencing 2 weeks after the surgery.
Rae VE
Medical Reply
The issue is that when you try to wean off the Requip,
the RLS will get worse temporarily. Lyrica is a very good RLS medication but may
not be up to treating the increased RLS symptoms arising from withdrawing from
Requip. The least painful way (often almost painless if done correctly) is to
stop the Requip and change to opioids. At the right dose (different for
everyone), the opioids can typically control all the RLS symptoms.
You have a few choices now. If you are concerned about the stress of your
surgery and the radiation treatment that will follow, you can put off doing
anything right now. You could stay on the Requip and perhaps take the Lyrica
with it to get control of your RLS. Once your breast cancer treatment is over,
you might then consider more definitive therapy for the augmented RLS.
However, you might want to consider going off the Requip right after your
surgery. They typically give patients Norco/Vicodin (hydrocodone) or Percocet
(oxycodone) for post operative pain. That medication might be sufficient to take
care of the withdrawal RLS symptoms from stopping the Requip. Typically, the RLS
gets worse for about 1-2 weeks then gets considerably better and easier to treat
after that.
Sent: Saturday, December 17, 2016 7:33 AM
Subject: RLS letter
I am a 66 year old male and have suffered through RLS for nearly 30 years. This
is a familial affliction but my symptoms seem to be worse than siblings or my
Dad.
I currently take 5-6 tablets of pramipexole .25mg in the late afternoon and
sometimes supplement with another 2 tablets late evening. This has been fairly
effective. My symptoms were generally bi-lateral and often in my arms.
I am one month post TKR of my left knee and the symptoms are now focused totally
on this leg. For 2 or three hours at bedtime, I have severe spasms in the left
leg only. The spasms stiffen my entire leg, particularly the hamstring tendons
to the point of being very painful. The spasms last 5 seconds and reoccur every
minute. I am also still using Oxycoset at bedtime as well but trying to wean off
this.
My concern is that the constant tightening spasms are affecting my recovery and
return to normal range of motion. In the morning my hamstring and the back of
the knee are tight and very sore. Should I add another medication perhaps a
muscle relaxant? Is this a common problem following major surgery and will I
gradually return to the former state of my RLS?
Allen T.
Ontario, Canada
Medical Reply
The muscle spasms are not related to your RLS but can
still be quite bothersome. Stretching exercises are often helpful but sometimes
nothing seems to help. Muscle relaxant medications do not seem to help very
often and also tend to cause drowsiness which may worsen RLS symptoms.
Another concern is that even though your RLS symptoms are currently controlled,
you are on a very large dose of Mirapex (I suggest a maximum dose of .25 mg and
even the liberal experts agree that one should not exceed .5 mg). The reason for
limiting the dose is that higher doses cause augmentation and if you already
have symptoms in your arms and need such a high dose, it is extremely likely
that you are suffering from RLS.
Your present high dose may cover you right now but will cause your RLS to worsen over time requiring higher and higher doses of Mirapex (which will in turn accelerate the RLS augmentation process).
Sent: Wednesday, December 21, 2016 1:39 PM
Subject: A few thoughts on trauma to the body and RLS
I've read several comments both from patients and in the medical replies about
back surgery as a trigger for worsening symptoms. It is my understanding and my
personal experience that any trauma to the body can cause more acute symptoms
that are difficult to control. I have experienced this with knee surgery to
repair cartilage and surprisingly after having a tooth pulled.
A woman in my support group: Southern Maine RLS Support group—reports an outbreak of symptoms if she even, say, stubs her toe really hard.
Jeanne L.
Medical Reply
In general, any type of stress (which of course includes trauma/pain) can easily worsen RLS. This is quite a common issue as noted in your comments.
Sent: Wednesday, December 28, 2016 10:35 AM
Subject: oxycodone and Neupro
I have written to you about my 85 year old husband about one or two years ago.
Briefly, he has an acute case of RLS brought on after a shoulder replacement three years ago. He had always suffered from PLMS. Either nothing worked for the RLS or he had an extreme reaction to the medication and couldn’t take it. The Neupro patch worked for a while (8 months increasing from 1 to 3 mg) until he developed sever augmentation. At that point, he went on oxycodone and up until the past several weeks, it has worked quite well for two years. He is taking about 10-15 mg over the course of the day. Along with that, 25 mg of Lyrica twice a day. At times, he was convinced the RLS had disappeared. Alas, not so. As you have stated, it is rare for it to disappear. Recently, he has been getting more frequent attacks which are exacerbated by his anxiety when having an attack. At those times, he will take perhaps .25 mg of Lorazepam.
His neurologist recommended he start up the Neupro patch
again. Actually, this concerns me as I have read in your responses that the
augmentation can re-occur quite quickly the second time around. He being so
sensitive to medications, I cut the 1 mg patch into quarters. He took it for
only two days. I think it definitely helped the RLS, but he thinks that it made
him very panicky and anxious and so, he has now discontinued it. Also he is very
active going to the gym and walking the dog every day. It is only recently that
the attacks have come in the morning actually waking him up. Of course, his
anxiety is increased which only increases the RLS.
My questions:
1) Why do you think his RLS has flared up again after two years of relative calm
(although the RLS has always been problematic but tolerable)?
2) Should he increase the oxycodone (he is at an average of about 15 mg
throughout the day: 8 am/ 4pm/ 12 am/ 3 am)?
3) Do you see the Neupro patch causing such panic and anxiety attacks in your
patients?
4) Would upping the dose of Lyrica help? (Personally I don’t think the Lyrica is
doing much, but that is purely a “gut” feeling)
Lucy G.
Medical Reply
1) It is often impossible to figure out why RLS worsens
after being calm for months or years. Possibilities include increased stress,
additional medications (even over the counter ones) that worsen RLS or a
decrease in serum ferritin (iron) levels (it might be smart to have his doctor
check his serum ferritin and iron levels).
2) If he is taking oxycodone 5 mg four times a day, then is he not taking 20 mg
of oxycodone? I typically go up to 30 mg of oxycodone when necessary but I would
first want to find out why there is an need for more oxycodone. A change to
methadone (which lasts longer so less dosing is required) might also be a
consideration.
3) I have seen a few patients with somewhat similar anxiety reactions when
taking dopamine drugs like Neupro but that is not very common. A bigger concern
is that augmentation may return quite quickly.
4) Lyrica is often a very potent drug for RLS. However, much higher doses are
often required. I normally start with doses of 50-75 mg and increase by a
similar dose every week if needed. We can go as high as 300 mg twice a day but
very often sedation limits the use of higher doses especially in older patients
like your husband.
It is difficult to give you more specific recommendations without seeing your
husband personally as a patient. However, the above information should give you
some reasonable guidelines for treatment.
Sent: Friday, December 30, 2016 4:15 PM
Subject: RLS Voluntary vs Involuntary question
I am a 43 y.o. male who has suffered from RLS my entire life. I remember rolling
my ankle until I fell asleep when I was a child. I think a distinction should be
made between involuntary restless movements and voluntary RLS. My RLS is
completely voluntary. I intentionally move my limbs because an unbearable and
uncomfortable feeling exists, and intentionally moving is the only way to
neutralize this unbearable feeling.
After countless hours of research I believe that my voluntary RLS has nothing to
do with my dopamine receptor. Requip, Sinemet, and other dopamine agonists and
re-uptake inhibitors make no difference for me.
My question: When RLS is dopamine-related, and can be mitigated using Requip, is
the RLS similar to Parkinson's where the movements are involuntary? Are there 2
types of RLS? One type is involuntary and is related to dopamine regulation,
while the other type is voluntary like mine and related to other causes?
Rob B.
Medical Reply
All RLS movements are voluntary. It is quite similar to
having a very itchy insect bite and deciding whether to scratch it or not. It
may be tough not to scratch the insect bite but it can be done. It may be harder
not to move when RLS symptoms become very severe and the only way to relieve
them is to move and some patients state that at some point, it is impossible for
them not to move.
There is one exception in that some patients will have an involuntary leg jerk
if they voluntarily try not to move while experiencing RLS symptoms.
There are a minority of patients (less than 10%) who do not respond to dopamine
drugs or even get worse when taking them. However, that has nothing to do with
the type of RLS symptoms they experience and is not a “different type of RLS” as
there is only one type of RLS.
There are patients who have PLM (Periodic Leg Movements) without RLS (most RLS
patients have these most commonly when asleep and sometimes when awake) and of
course they will experience involuntary leg kicks but that is different from
RLS. Most of these patients will also get relief from the dopamine drugs.
Sent: Monday, January 02, 2017 7:08 AM
Subject: Ropinirole vs pramipexole
I recently switched from pramipexole to Ropinirole. I did this because my
insurance considers Ropinirole a tier 2 drug while pramipexole is considered a
tier 3 drug and costs a lot more. The pramipexole dosage was . 5 mg and seemed
to work. The Ropinirole dosage was 4 mg. the Ropinirole worked for about 5 days.
On the 6th day it worked but I woke up 2 hours after taking it with twitching
legs. After 2 hours of suffering I took a pramipexole tablet. Was able to sleep
after about two hours.
Should I give up on Ropinirole or give it more time. It is very difficult to
function when sleep deprived.
David K.
Medical Reply
It is hard to understand why pramipexole is considered a
tier 3 drug since it has been generic for many years and typically cost the same
as ropinirole. There have been some very recent price increases in some generic
drugs recently so I guess that is possible.
Typically, pramipexole is 2-4 times more potent than ropinirole so the
equivalent dose should have been 2 mg of ropinirole instead of 4 mg. However,
that should have made the drug work better (although it increases the risk over
time for developing augmentation which is a worsening of RLS from taking a
dopamine drug like ropinirole or pramipexole). However, ropinirole lasts only
for 6 hours while pramipexole may last 8-12 hours which may account for some of
the nighttime breakthrough of RLS symptoms. You would likely do better with
pramipexole although you are already on a fairly high dose.
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Source: Southern California Restless Legs Support Group,
Patient Letters and Medical Answers Section, Page 115.
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