Sent: Wednesday, July 18, 2012 4:51 AM
Subject: RLS
I am a 49 year old female who has suffered with RLS for many years. My diagnosis
came when I attended a Sleep Study and was told I have one of the most severe
cases the doctor has ever seen. I've been on Requip for a year now. It works
great once I take it but when I do I am out cold. Over the last few months the
RLS now effects me at work - as soon as I get tired. It's a nightmare. I have to
move constantly. I'm looking for suggestions or help. I am so depressed from
this condition. Is there anything out there that is all natural that can help?
Any suggestions would be so appreciated
Linda K.
Schenectady, New York
Medical Reply
RLS cannot be diagnosed from a sleep study. The sleep study can
determine that you have PLM (leg kicks) that are very common in RLS patients but
also occur very commonly in many other people (those on antidepressant drugs,
sleep apnea, etc.).
It sounds like you are experiencing augmentation from the Requip (worsening of
your RLS from taking a dopamine agonist like Requip) in which case you will need
more and more Requip as your problem worsens (and will be fueled by Requip).
Typically, we like to get patients off the dopamine agonist but that is a very
difficult process usually requiring potent opioids.
There are no natural remedies that are likely to make a significant impact to
your current problem.
A Reply from Linda
Sent: Thursday, July 19, 2012 4:42 AM
Subject: Re: RLS
I'm confused. So do I have "leg kicks" or RLS? He said during the sleep study I
woke up over 50 times and was constantly moving my legs. Is the dopamine in
Requip? I'm assuming taking Lexapro could make the symptoms worse. Sounds like a
catch 22 situation. I can't sleep without the Requip but if I stop I won't be
able to control the RLS. My doctor has not offered me any other alternative. Any
advice on which path I should take to make this better?
Linda
Medical Reply
PLM are leg kicks that occur while you are asleep (sometimes
even while awake) and most people who have them are not aware of them (but their
bed partners certainly might). As noted in my previous email, PLM occur with and
without RLS (like taking Lexapro) so they cannot be used to diagnose RLS.
RLS occurs only when awake and is diagnosed as follows:
Below are the 4 essential criteria for diagnosing RLS:
1) An urge to move the legs, usually accompanied or caused by uncomfortable and
unpleasant sensations in the legs. (Sometimes the urge to move is present
without the uncomfortable sensations and sometimes the arms of other body parts
are involved in addition to the legs.)
2) The urge to move or unpleasant sensations begin or worsen during periods of
rest or inactivity such as lying or sitting.
3) The urge to move or unpleasant sensations are partially or totally relieved
by movement, such as walking or stretching, at least as long as the activity
continues.
4) The urge to move or unpleasant sensations are worse in the evening or night
than during the day or only occur in the evening or night. (When symptoms are
very severe, the worsening at night may not be noticeable but must have been
previously present.)
If you do not meet the above 4 criteria, then you most likely do not have RLS.
If you have RLS based on the above, I can answer your questions further.
A Reply from Linda
Sent: Friday, July 20, 2012 5:57 AM
Subject: Re: RLS
Absolutely have RLS. I meet all 4 of those criteria's. Its not only at night but
as soon as I feel tired which usually occurs at work around 3:00. I can't even
sit at my desk. I have to stand which is difficult because I have a very
demanding job running a radiology group and I sit for 8 hrs a day. Once 7 pm
hits I can't go to the movies, dinner etc... because I can't sit still. Its not
painful, just the most uncomfortable urge to move them. Like I said I want to
jump out of my skin. I've read that anemia can cause it, along with diabetes.
I am anemic but I can't get any real answers. If I take the Requip at 7:00, an hour later I have to go to bed therefore I no longer enjoy activities I used to do past 7 pm.
Linda
Medical Reply
It sounds like you are experiencing augmentation from taking
your Requip (that is a worsening of your RLS from the drug – check our website
for more info). Typically we recommend stopping the Requip (which will cause
your RLS to markedly worsen) and treating the withdrawal with potent opioids.
Horizant may be added in a couple of months to reduce or eliminate the use of
opioids.
However, finding a doctor to accomplish the above may be very difficult.
Iron deficiency is associated with worsened RLS and a serum ferritin level
should be checked. Iron supplements may then be helpful to if you serum ferritin
level if below 50-75 even if you are not anemic.
Sent: Tuesday, July 24, 2012 9:35 AM
Subject: RLS and medical marijuana
This is a wonderful website. It helps so to be able to read it
and know you're not alone in your struggle.
I am a 65-yr-old female who has suffered with RLS for 15 years. My doctor
prescribed Xanax and Sinemet, which worked for a while, but then my symptoms
worsened to the point where I dreaded going to bed every night. I would toss and
turn all night, feel awful the next day and sometimes find myself so frustrated
in the middle of the night that I was in tears.
Two months ago I read in this site that some people were having good results
with their RLS symptoms by using medical marijuana. Like a lot of baby boomers,
I had smoked marijuana, but it IS a controlled substance, and at my age, how
does one obtain it? So, I gathered my courage and went to see a doctor in
another town to request a prescription for medical marijuana. He was very
understanding and gave me a document that allows me to possess marijuana for
medical purposes. He directed me to a reputable dispensary, and from there, I
returned home with a supply of high-quality medical marijuana and a vaporizer!
The happy ending is this: I use the vaporizer each night and take in a few
inhales of an Indica strain of marijuana before bedtime. Since the very first
night, my RLS symptoms have completely disappeared! It's like I never had them!
The medical marijuana doctor also suggested I see a specialist in bioidentical
hormone replacement, which I did, and that has also been a great success. I have
been on natural estrogen, progesterone, DHEA, testosterone, thyroid and
melatonin (all from a reputable compound pharmacy) for two months, and the
changes have been I incredible. I am an exerciser... One hour of treadmill
daily..and before the HRT I was stuck as far as losing bodyfat was concerned.
Since I started BHRT, In two months, I have decreased my waist by two inches, my
back fat it melting away, my energy has skyrocketed, and I sleep like a baby. I
am weaning off Sinemet, down to one-half tab per night as opposed to two, and
Xanax is down by half. My BHRT doc says to wean very, very slowly, I am. My
hormones are now almost all at optimum levels and I feel more in balance than
ever.
Just thought someone out there might be able to use this info.
Marilu F.
Medical Reply
Sinemet is no longer used on a daily basis for RLS as it causes
augmentation (worsening of RLS symptoms) which is what happened to you.
Hopefully, you are no longer taking the drug.
Although medical marijuana does control RLS very nicely in your case, you may
still want to change to a drug like Horizant that does not cause augmentation
problems.
Sent: Thursday, July 26, 2012 8:10 AM
Subject: Question on RLS
I am 27 years old and have had RLS since I was 12 yrs old (officially diagnosed). RLS runs in my family and I have a severe case of it. over the last several years, it has become very severe, I will go 4-5 days without sleep and no amount of my medicine seems to work when I go through those periods. I have RLS on a daily basis, usually 3-4 times at night normally and depending on what I’m doing (watching a movie, sitting around a fire, airplanes, long car trips- anything that requires ‘sitting’ or ‘being still) during the day. I also get RLS in my elbows.
My symptoms are so severe that my arms/legs will move themselves if I do not move them or get up. I have tried every medicine out there for RLS. Requip, Mirapex, Neurontin, etc… I am also not able to take any cold medicines, muscle relaxers, anti-depressants, all that stuff or I will have even worse RLS for weeks on end. I am currently taking 300mg of Tramadol (2 in the morning, 2 in the afternoon and 2 before bed) 12.5 mg of Ambien (before bed) and 3 .5 mg of Alprazolam. The Ambien and alprazolam do their job in the anxiety and insomnia I’ve suffered but the RLS is relentless. I wake up a lot of mornings with pain in my hips and back so severe from the way that I’ve been forced to sleep due to the RLS throughout the night.
The tramadol has helped me the most out of any medicine I’ve been on, as I don’t respond at all to the dopamine agonist type medicines or anything else they’ve put me on. I feel that after researching the medicines available and what I’ve responded to the best, that an opiate would be my best option but I fear that my doctor will not understand the severity of my RLS, how it’s affecting my work and personal life, and how miserable I am. I read on your website that 20 mg of Methadone works and you responded that it’s a good medicine to try for Severe RLS. I do not have a history of drug abuse, and I have tried everything I can think of to combat this. Would asking my doctor to try this method of treatment be acceptable? I would at least like to try it to see if it works, but feel uncomfortable asking for such a strong medication for something I feel that people do not understand.
Amber B.
Medical Reply
For RLS that has not responded well to our usual and customary drugs, opioids are typically the next class of drug to prescribe. You are correct in that most physicians will be reluctant to prescribe these drugs for RLS but that is mostly due to their lack of knowledge on how to treat severe cases of RLS. Even most specialists do not know or feel comfortable with using strong opioids for RLS.
You may also want to try the new RLS drug Horizant as it works much better than gabapentin/Neurontin.
Sent: Saturday, July 28, 2012 10:42 PM
Subject: RLS and Subutex
I have a significant case of RLS after many years of antidepressant use. It
first became a big problem after ceasing use of pain meds. for migraines
followed by Suboxone. When I tried to eliminate the Suboxone I was unable to
because the RLS became unbearable. But the Suboxone caused so many side effects
my doctor suggested I try Subutex. The Subutex is effective but it also causes
nausea and is difficult to get the exact dosage right because it takes so little
to work that I cannot divide the tabs. accurately.
Do you have any experience with this approach? Is there anything you can suggest
to help and is there any literature about Subutex and RLS?
Lee B.
Medical Reply
I have tried Requip but had a miserable reaction to it and had a poor reaction to Sinemet as well. I also cannot tolerate Methadone. If you have any suggestions I would be grateful.
There is no literature on the use of Suboxone (buprenorphine and
naloxone) or Subutex (naloxone) for RLS and there is very little clinical
experience with these drugs so far with RLS. However, some research is being
done (but not published) with the use of these drugs so we may know more in the
future. They likely work similar to methadone but may differ in both
effectiveness and side effects from person to person.
It may take trial and error to figure out which opioid may be helpful. You may
also consider the use of Horizant or Neupro which may also be helpful (with or
without an opioid).
Sent: Monday, July 30, 2012 8:48 PM
Subject: RLS question
I have had RLS since I was a child. It was only during my 4th pregnancy that I
finally put a name to it. My question is this: Are estrogen or progesterone
levels related to RLS? My symptoms were terrible during my last 2 pregnancies.
They got better after delivery, but got worse as I got older (I am now 45). My
doctor put me on the pill to help regulate my periods, and my RLS symptoms
improved dramatically. I also take a low dose Prozac which was originally
prescribed for PMS symptoms, but which I continue to take for RLS because when I
weaned off of it, my symptoms worsened.
I would like to get off both the Prozac and the pills, but do not particularly want to start Mirapex or Requip. I am a former drug rep who spent too much time in the drug closets of doctor offices reading the package information for various meds, and am fearful of the possible adverse effects of these drugs. Do you know if natural hormone replacement is helpful for RLS? My physician swears that RLS is not related to a woman's hormonal cycle, but I am convinced that (at least in my case) it very much is related.
Amy F.
Medical Reply
There is little literature to support the hormonal effect on RLS
but those of us who treat a lot of RLS cases are very familiar with the effect
of hormones on RLS. However, this effect can be very unpredictable with some
getting better with hormones and most getting worse. Many women have increased
RLS symptoms during the latter half of their menstrual cycle (often quite bad).
Prozac typically worsens RLS so your improvement with the drug is hard to
explain. There are no known natural remedies for RLS (that is ones that have
been scientifically proven to help RLS) but you should have your serum ferritin
level checked and if it is below 75 mcg/l, you may want to consider (discuss
with your doctor) taking oral iron supplements.
Sent: Tuesday, July 31, 2012 10:22 AM
Subject: Treatment Plan Question
Sorry for the long email. I am a 37 year old woman. I have had RLS since I was a
teenager, but it was very intermittent then. When I was 25, it began about one
week out of each month that it drove me crazy. I mentioned this to my PCP at the
time, and he prescribed Sinemet 25/100 to take during that week.
Slowly over the next 10 years, I began to have the symptoms nightly. Slowly my
dose increased too, where I was taking 3 Sinemet tablets per night, every night.
Then about 2 years ago, my symptoms started during the day too. Initially he
prescribed Tramadol during the day, but at some point decided that I had
augmentation caused by Sinemet & I should get off of this drug. He then left the
practice to work in a hospital.
So, the other PCP in the office put me on Mirapex. The first night, I was so
nauseated, my nose was stuffy, and my jaws ached all night. So he said don’t
take that again, and put me on Requip. This worked for my legs at night, but I
could not sleep. It also made me super loopy if I did not get to bed within an
hour, enough so that my teenage boys worried about me making it up the stairs.
For a year, I slept an average of 4 hours a night on Requip. During this time my
legs started up again during the day. He prescribed Gabapentin. I was taking
3600 mg of Gabapentin per day. He wasn’t sure what to do next since I was not
sleeping, so he sent me to another sleep doctor. This doctor performed a sleep
study and took me off everything else and put me back on Sinemet 25/100. I have
been on this for about 4 months now, and my legs are driving me crazy during the
day, but I am sleeping again at night.
When I called my sleep doctor about my daytime symptoms, his reply was to take
Requip. There is no way I can take this during the day as I have a job, and
cannot go to work loopy. When I called back, he didn’t prescribe anything else
for the daytime symptoms, and told me to wait for the Neupro patch, so I have
fallen back on my old prescription of 3600mg of Gabapentin daily. It mostly
takes the edge off, but my evenings are still horrible. I cannot relax, and even
at work during the day, my legs still bother me.
I believe the Neupro patch is now available, but am worried that maybe I don’t
need to be on a 24/7 medication. Is it possible that I only need something at
night that does not cause augmentation? I am also worried about the side effects
of the Neupro patch, as I have not had very good experiences with anything other
than Sinemet. My sleep specialist is listed as an RLS specialist and I feel like
I am out of options, so I just wanted to run this treatment plan by you. Thank
you so much for your time.
Jennifer
Medical Reply
The sleep specialist who prescribed you Sinemet after you have
experienced augmentation with that drug (and even if you had not had any
augmentation problems for that matter) is clearly not an RLS specialist. He may
be listed on the RLS Foundation as a doctor who treats RLS (they do not vouch
for the credentials of doctors listed on their site but rather just publish a
list of doctors who state that they treat RLS) or he may call himself an RLS
expert but that clearly is not the case based on his treatment of your RLS.
Gabapentin is a very unpredictable drug and if you have received only modest
benefits at 3600 mg per day, it is likely not the right drug for you. Neupro
might work better but since you have already had augmentation, the odds are
increased that you may have augmentation with Neupro (it is available now in
pharmacies). If you can’t access other therapy, it may be worth a try.
Lyrica or Horizant (but there may be insurance coverage issues with the dose
that you might need) may work better than gabapentin (but may also be more
expensive). However, it is still quite likely that they will not resolve all of
your RLS symptoms. For severe cases like yours, we typically consider the use of
potent opioids like methadone or oxycodone. Finding a doctor who will prescribe
those drugs is often a real problem. There are very few real RLS experts out
there who understand how to manage severe cases that have failed the first line
drugs.
Sent: Tuesday, July 31, 2012 12:10 PM
Subject: DRUGS FOR RLS
I went to see a top Neurologist yesterday and it wasn't very successful. His
attitude was take as much Mirapex as I want there isn't a maximum dose. Take the
full dose of Pregabalin as well and also take Sinemet and Madopar.
I belong to Healthunlocked forum and they have been very
supportive and given me your e mail address and told me to ask for your advice.
My GP has been very good but is afraid to give me more Mirapex, I take 2 x
0.35mg each night. My legs start at 5.30 and sometimes in the afternoon when I
am tired,
Margaret T.
Medical Reply
Unfortunately, the top neurologist who you saw is clearly not a
top RLS specialist. His advice is absolutely incorrect and as you have noted it
should not be followed. You are already on a high dose of Mirapex (Mirapexin)
and are developing augmentation (worsening of your RLS from taking a dopamine
agonist like Mirapex) which means that increasing the dose will only add fuel to
the fire. Adding Sinemet and Madopar will also worsen this augmentation so
should not be taken.
Pregabalin is a reasonable drug but you did not state how much you are taking
for me to determine if you could take more.
The recommended treatment for your RLS would be to get off the Mirapex and treat
your RLS symptoms with a potent opioid (methadone, oxycodone, etc.). However,
you will experience great difficulty finding a physician to prescribe this
treatment.
Sent: Wednesday, August 01, 2012 3:35 AM
Subject: switching
I am a 55 year old woman with Restless Legs. I am on Sifrol
(pramipexole/Mirapex), 0,18 mg x 2 every night. I also take Panacod (Tylenol
with codeine) and Madopark (levodopa-benserazide, similar to Sinemet). Since it
does not work very well anymore I would like to switch to Neupro. My doctor has
prescribed Neupro, but she knows nothing about it... And if you want to see a
specialist doctor here in Sweden, you have to wait for several months... So I
put my question here instead.
How do I do the switch? Can I just stop with the Sifrol one day
and take the Neupro patch the next day, or should I take less and less Sifrol at
the same time as I take more and more Neupro?
Anna-Karin in Sweden
Medical Reply
It sounds like you are experiencing augmentation (worsening of
RLS from taking dopamine drugs) from taking 2 dopamine drugs (which is something
that typically is not done for RLS due to the concern about augmentation).
Changing to a long-acting dopamine drug like Neupro may be helpful but we do not
have a lot of experience with switching from short acting dopamine agonists to
Neupro when augmentation is present so it is hard to predict what will happen.
However, there is a reasonable chance that this change may sooner or later
result in further augmentation problems.
The treatment of augmentation is much more complicated and difficult (see our
many letters on this topic) but typically requires getting off the dopamine
drugs completely.
Changing to Neupro would probably require changing to the 1 mg dose/day for 1
week (you might need additional Panacod or one of your dopamine drugs) then
increasing to 2 mg/day for the next week then if needed to a maximum of 3 mg/day
the following week. There are no protocols on how to do this and often it must
be done differently for each patient by someone who knows what they are doing
(which is very hard to find even if you see a specialist).
A Reply from Anna-Karin
Sent: Thursday, August 02, 2012 1:46 AM
Subject: Re: switching
Since it is not good to take both Sifrol and Madopark at the same time( I did
not know this) , what if I start to get rid of the Madopark, slowly and in the
same time maybe take some extra Sifrol or Panocod instead, if its unbearable.
Then, after getting rid of the Madopark I switch over to Neupro maybe in a slow
way, less and less Sifrol and more and more Neupro.
Then I would be on just one dopamine drug at least. What do you
think of this, is it a good or bad idea?
Anna-Karin
Medical Reply
There are no strict guidelines for changing over from your current medications to Neupro for RLS as very few patients are ever on your current medications. My suggestion to discuss with your doctor would be to stop the Madopark completely then start Neupro and add some Panacod and possibly some Sifrol if necessary when you are the lower doses. If you still need Sifrol once you have gotten on the 3 mg Neupro patch, then that drug is not for you.
Sent: Wednesday, August 01, 2012 10:54 AM
Subject: Terrible withdrawal symptoms from Mirapex
I've been taking Mirapex .25 mg 4x per day for quite a while now. I started just
taking it at night for my RLS, but found gradually that I needed it every 6
hours, in order to keep my limbs from jerking uncontrollably
I have MS; I also have neuropathy (burning) in my legs & feet. After trying
Neurontin for the burning (which made me feel drunk all the time), my doc
suggested cutting the Mirapex down to 2 per day, then switching to Horizant. I
think he doesn't understand how addictive the Mirapex is!
I was unable to cut down the Mirapex - the withdrawal was TERRIBLE! Although,
I'd like to quit it because I think it causes me to shop too much! How do I
titrate off the Mirapex, while starting on the Horizant? My doc doesn't want me
on both at the same time.
Jodi T.
Medical Reply
Although Mirapex is not addictive in the true sense of the word,
once a patient is on it for a while, withdrawing from it causes severe RLS
symptoms which are much worse than those experienced prior to treatment. This
worsening may last for several weeks or even months!
There is no reason not to take Horizant with Mirapex as Horizant turns into
gabapentin/Neurontin which you have already done (and I treat patients with both
of these drugs together all the time). The only issue is that the Horizant (as
with gabapentin) is not potent enough to treat your enhanced RLS withdrawal
symptoms.
The only drugs that typically treat Mirapex withdrawal are the opioids
(methadone, oxycodone) but most doctors are very reluctant to prescribe these
drugs for RLS (despite many experts advocating their use for this purpose).
A Reply from Jodi
Sent: Monday, September 10, 2012 8:36 AM
Subject: Re: Terrible withdrawal symptoms from Mirapex
Thanks for your previous replies - I showed this to my doctor; he's unfamiliar
with Mirapex withdrawal, and doesn't know where to go from here. I started
Neurontin for my burning legs, at 100 mg. 3x/day.
I do want to get off the Mirapex completely; how do I substitute opioids for
that? What dosages do I take? How do I titrate off the Mirapex?
Once off the Mirapex, how long do I have you continue taking the opioids?
Jodi T.
Medical Reply
There are several ways to accomplish getting off Mirapex. My
technique is to stop the drug cold turkey and add methadone 5 mg, 1-2 up to 3
times daily (but the patient should attempt to take the smallest dose that
relieves the majority of the symptoms).
After 1-2 months the RLS should calm down (and the patient should be on a lower
dose of methadone) then Horizant may be added which may allow a significant
decrease or even elimination of the opioids.
Sent: Wednesday, August 01, 2012 3:33 PM
Subject: Requip
I take gabapentin 800 mg and Requip Mg every night for my RLS. I take gabapentin
between 6pm and 7 pm. I take the Requip about 8 pm. I take the Requip later
because it makes me extremely irritable. My boys call it the mean medicine
because my mood changes so drastically. Just wondering if anyone else
experiences this phenomena.
Wendy
Medical Reply
Irritability does occur with Requip but it is not the most common side effect with that drug. You may consider a change to Mirapex which is similar but different enough that it may not cause the same problem. You might also try changing gabapentin to Horizant (which produces gabapentin) as it works much better than regular gabapentin.
A Reply from Wendy
Sent: Wednesday, August 08, 2012 6:03 AM
Subject: Re: Requip
Why do you think Horizant is better? Isn't it just extended release gabapentin.
Could I use this only at night without daytime sleepiness or "hangover".
Wendy
Medical Reply
There are some major differences between regular gabapentin and
Horizant. Briefly, gabapentin uses limited transporters to get into the body
from the intestine so that increasing the dose saturates the transporters and
only a limited amount gets into the blood stream (which also varies considerably
from patients to patient). Typically, most patients get side effects well before
they get RLS relief.
Horizant is a prodrug of gabapentin so it can use the high capacity transporters
and gets into the body in a predictable fashion at high levels. Since it is a
slow release product, the result is level, consistent concentrations of the drug
for 8-12 hours. It is not possible to simulate this effect with regular
gabapentin due to the peaks and troughs of concentration that occur with
multiple doses of short acting drugs.
Most patients do not suffer morning sleepiness with Horizant but some slow
metabolizers may have this problem.
Sent: Thursday, August 02, 2012 9:53 AM
Subject: Examples of Life After Medication?
I’ve been reading the information on your website and found it very helpful. I
began taking .125 mg of Mirapex approximately four or five years ago. I needed
to increase the amount over the years due to worsening symptoms.
I decided to wean myself off my Mirapex due to various reasons. Just before I
started weaning myself off Mirapex, I was taking .375 two hours before bedtime.
I had been on that dose for about six months. Three to four weeks ago I started
to taper down my dosage. I did this in hopes of lessening the rebound or
withdrawal symptoms.
I am not on any other prescription medicine. I only take supplements such as magnesium citrate, B-complex, D, and C. At this point I am not willing to try any other prescription medications. The last two nights were medication free and horrible beyond belief. I’m not sure the tapering helped at all. I see that you suggest this rebound period may last a month or even months. Can you give examples of what some people experienced during their withdrawal phase and how long each segment lasted? For example – will the first week be horrible then get better?
Also, are you familiar with any patients that have completely
come off the prescription medications? How are their symptoms now, months and
months after weaning and going through withdrawal?
Is there life after Mirapex and what does that look like?
Jenna
Medical Reply
There is definitely life after Mirapex and it should be
completely normal life. Stopping Mirapex by tapering or by cold turkey both
result in a marked worsening of RLS symptoms that lasts weeks to a few months.
Each person is different but most should get back to where they were prior to
starting the Mirapex within those weeks to months (which means that most will
still need some type of treatment). For those who elect to stop Mirapex without
adding other medication just after stopping/tapering (I usually like to stop my
patients cold turkey) the drug, not sleeping much if at all for weeks to months
is common.
Due to that issue, most RLS specialists recommend treating Mirapex withdrawal
with a potent opioid (methadone, oxycodone) which can make that transition
virtually painless. After several weeks/months, another drug such as Horizant
may be added that may help reduce or eliminate the need for the opioid.
Sent: Friday, August 10, 2012 3:29 AM
Subject: Opiate Medications
I am a 48 year old female who was diagnosed with Restless Legs Syndrome about
five years ago. At first I thought that I would take a course of medicine and
this would go away, like the flu. My Doctor gave me Mirapex and my mild symptoms
of Restless legs Syndrome were gone for about six months. Then I began to have
side effects such as insomnia, so Ambien was added. The side effects continued
to mount and more drugs were added such as anti depressants, carbidopa-levodopa
or Gabapentin with no relief.
I am to the point now where the side effects have taken over and the Mirapex is impossible to discontinue because I when I try to stop I suffer wildly flailing limbs for days along with severe insomnia and depression. I have not had much success with finding a doctor who had a treatment plan that has managed my Restless Legs Syndrome so far. I have several appointments scheduled for prospective new Doctors but they are weeks away, so I tried something on my own. I am sure this is not recommended however I have had a terrible month and my current doctors have told me not to take the drugs if I am suffering side effects which is not helping me to manage or treat my Restless Legs Syndrome at all.
The current medications I am prescribed are : Mirapex 0.5 mg three to four times a day, Vicodin 7.5-750 milligrams twice a day and Zolpidem 12.5 mg at bed time. I have tried to go cold turkey on all of these medications and suffered terrible. Yesterday I choose to only take the Vicodin at 4 times a day and the result is amazing. The only symptom I have is a gentle massaging fingers feeling from under my skin which is tolerable. I was able to fall asleep without the Ambien.
I have read that opiates alone have helped others with Restless Legs Syndrome and I am feeling relief with opiates alone, even though its only been 24 hours, I feel clear and calm and have tolerable signs of disease with no side effects. Can you suggest other drugs, perhaps milder forms and how do I approach this type of therapy with a doctor without sounding like an addict?
Cheryl M.
Medical Reply
It is not surprising that you had lots of trouble with stopping
all your drugs. Opioids are often the solution for tough RLS cases such as yours
but you should do that only under the supervision of a physician. We often use
methadone (at low doses) for RLS and with proper doses and management, there is
typically excellent relief of symptoms and minimal if any side effects/concerns.
However, most physicians (even those who treat a lot of RLS cases but are not
true RLS experts) are not comfortable with using these medications.
There may be other solutions but it would take someone with greater expertise to
figure them out.
Sent: Monday, August 13, 2012 9:04 PM
Subject: RLS
I am a 29 year old male that has suffered from RLS for over 5 years. I have tried Mirapex ropinirole and carbidopa/levodopa with immediate results, but have developed augmentation really quickly. My neurologist started me on 15 MG instant release oxycodone with huge success. I have been on it for the past three months and it acts wonderfully controlling my crawling movements and allows me to go to sleep. However the past month I've noticed that I'm waking up in the tail end of the evening /early morning with what seems to be worse symptoms.
I've gotten up and taken my dose again 15 mg and it usually
works. This past month on the 3rd I got my script for 84 5mg oxycodone. I
started taking six at night and found it has kept me asleep until the morning
with no virtually no symptoms. Is there another medication that is fast acting
but last longer that I wont need to take six of? Also why did the previous mg
stop working so effectively?
Kyle B.
Medical Reply
It is not clear why your 15 mg dose of oxycodone has lost its
potency but the highest dose that I typically use is 10 mg at a time. Taking
higher doses may have lead to some tolerance which is something that I rarely
see with my guidelines.
You might want to consider adding Horizant to see if you can lower your
dependency upon opioids.
A Reply from Kyle
Sent: Tuesday, August 14, 2012 12:16 AM
Subject: RE: RLS
In my previous email I forgot to list gabapentin as a medication that I also have tried with minimal results. In may I fractured my heel in four places on a job site, which complicated my symptoms, however I am on 900 mg a night for shooting nerve like pain that shoots up the side of my leg starting at my pinky toe. My mother also battles this baffling condition, and she is taking 10 mgs of methadone one hour before bedtime and it provides permanent relief. She also has tried various medications. In your opinion, what are the benefits of various opiates, versus benzodiazepines and should I try another opiate like medication?
I have not tried any benzodiazepines, and was wondering what your take on them is. I usually end up taking 20 to 30 mg of oxycodone to stop my movements and it works great, I am just concerned about why the prescribed 15 mg worked for about a month, and then stopped being effective for the whole night. It seems when I take the 15 mg it works for a good three to four hours, then I am up and about moving all around trying to stop the movements, and then I take another 10-15 mg, and I can get back to sleep comfortably. I guess what I am trying to ask is there a medication similar to what I am taking that will last me the whole night. I haven't got a full 8 Hours in quite some time. Also I take about 1500 mg of iron supplements per day.
Thank you for your help, as I am not sure my doctor has any other previous experiences with a case like mine. Any advice you can give me that I can pass along to my doctor would be great as I see her on Wednesday the 15th. Also what benefits can a sleep study provide? I was going to get one however it is too expensive at this time for me.
Kyle B.
Medical Reply
Methadone (Dolophine) works best for most (but not all) RLS patients who need an opioid. Usually one dose of 5-10 mg is very effective and will provide 8-10 hours of relief (however, your mileage may vary). Since you are already on high doses of gabapentin, it would not be too helpful to change to Horizant although substituting Lyrica for gabapentin may help both your sciatic pain and your RLS better.
A sleep study would likely provide little if no benefit in your case (and for most RLS patients).
Sent: Friday, August 17, 2012 5:48 AM
Subject: RLS Symptoms, etc.
I am 81 years old and have been battling RLS since in my 30’s. Have taken many
different meds that didn’t work, or worked only a very short time. A number of
years ago my doctor put me on Permax which was a miracle! Then the FDA either
took it off the market or no longer allowed insurance to cover it. Then I was
prescribed Neurontin and Requip. Still having many problems. I then went to a
Neurologist who prescribed the Neutontin, Mirapex and Requip which have been a
Godsend.
I am now considering the Neupro patch and even have the sample pack but have a lot of questions about all the serious side effects. Do you think I should just stay with what is now working for me or try the patch? By the way, I am also on Xanax to help me get to sleep and I cannot go to sleep without it for I have tried it more than once.
Myrtle
Medical Reply
I am not clear as to whether you are currently taking
Neurontin together with both with Mirapex and Requip or with just one of those
medications (since both Mirapex and Requip work on the same receptors so are
generally not taken together).
I could answer your question much better if you tell me the exact doses you take
of all your current medication.
A Reply from Myrtle
Sent: Saturday, August 18, 2012 12:15 PM
Subject: Re: RLS Symptoms, etc.
I am on 0.5 MG Pramipexole (Mirapex), 4MG of Ropinirole (Requip), and 800 MG of
Gabapentin (Neurontin). It was all prescribed because I have such a severe case
of RLS. My Neurologist prescribed these meds. Also, the Alprazolam (Xanax) I am
taking is 1 MG.
Myrtle
Medical Reply
Your dose of both Mirapex and Requip are very high. Even
though the FDA approves each of the doses that you are taking as the maximum for
each drug, most RLS experts believe that they should be used at much lower
levels. Furthermore, you are taking them both together which means that you are
at twice the FDA approved dose already. Part of the problem with your severe
case of RLS is that likely have augmentation which is a worsening of RLS from
taking dopamine agonists like Mirapex and Requip. If you add more of these
medications, it is likely that they will give you relief for a short time then
your RLS symptoms will get worse.
The treatment of your augmentation problem is very difficult and possibly beyond
the knowledge of your neurologist. You may want to seek help from an RLS expert.
The 1 mg of Xanax is a high dose and taking it on a regular basis has a high
likelihood of causing tolerance and dependence to the drug.
Neupro may work a little better for a while but from the sounds of your problem
you may need to get off the dopamine drugs (Neupro is a dopamine agonist) which
is hard to do unless done by an RLS expert or someone very knowledgeable in the
area.
Permax was taken off the market since it caused scarring of heart valves in
about 25% of users.
Sent: Friday, August 17, 2012 7:56 PM
Subject: FW: RLS
About 1.5 years ago I started to have RLS symptoms when I started to work
irregular, shift work hours. I am also iron deficient and treatment is difficult
for me as I have some digestive issues that are exacerbated by the supplements.
I work in law enforcement and I am very reluctant to start the Mirapex as I
carry a gun and am concerned about the side effects. However, life is pretty
much unbearable at this points as I at times go days with no sleep or only sleep
from 4 to 5 am. If I stay up and do not get to sleep before 11 pm my symptoms
get worse.
o you think the shift work is contributing to the RLS
problem? Also, if I start the Mirapex, should I be concerned about taking the
dose while at work and armed and subject to dangerous situations and driving so
I can be sure to have no symptoms when I arrive and home and go to bed?
Thank you so very much for any input you can provide. I feel like I am backed
into a corner. My body is falling apart since I was diagnosed with this
condition as I am always suffering from exhaustion. I also have a condition in
the brain cavernous hemangiomas which I hope there is no effect to by taking
Mirapex.
Olivia C.
Medical Reply
The first issue is whether Mirapex will cause sedation
and make it difficult for you to work. Although sedation does occur, this is
only in a small percentage of patients (less than 5-10%) so the chances are
quite good that you won’t have a problem. If you do, then you simply stop the
medication and change to something else. If you only have RLS symptoms at night,
then taking Mirapex in the evening will also reduce the odds of you having any
daytime sleepiness side effects.
There is a new long acting drug, Neupro patch that lasts 24 hours and would
cover daytime symptoms also but might have a higher risk of daytime sleepiness
(although still very low).
Horizant is another RLS drug that helps sleep and when taken at 5-6 pm (as
suggested) should cause sedation only at bedtime and not the next day (although
that too is a side effect in under 5-10%).
Regardless, at this point your sleep deprivation is likely causing much more
daytime sleepiness and impairment than any drug would cause, so taking a
medication would be the lesser of two evils (and most likely not cause any
problems).
Sent: Friday, August 24, 2012 12:58 AM
Subject: RLS - CHANGE IN MEDICATION
I have suffered from severe RLS for a number of years and am currently taking
0.18 mg Mirapex in the morning and 0.35 mg Mirapex in the evening plus I wear a
3mg Neupro patch. I experience restless legs for most of the day if I want to
sit down and all the evening sometimes until the early hours of the morning. On
average I get 5 or six hours of broken sleep which varies from about an hour up
to 7 hours.
I have just seen a specialist who has recommended that I wean myself off the
Mirapex and change to 100mg Gabapentin three times a day. My doctor has no idea
of how long I should allow for the weaning off of the Mirapex so I am assuming
that I can achieve this in a couple of days. Does this sound reasonable?
My other question is: Is the dosage of 100mg Gabapentin three times a day
considered a normal dose or can this be increased if not effective?
Robin S.
Medical Reply
Unfortunately, you are not going to like my answer.
You are most likely suffering from augmentation which is worsening of RLS from
taking dopamine agonist (Neupro and Mirapex in your case). The treatment for
this problem is to get off ALL your dopamine agonists completely. However,
stopping or tapering off dopamine agonists (especially once augmentation has set
in) will make your RLS symptoms get 5-10 times worse for weeks or month. If you
think that you are having problems now, this is nothing compared to what you
will go through if you try to wean the Mirapex.
I have my patients stop the dopamine agonists completely but I prevent their
symptoms from bothering them by using a potent opioid (methadone, oxycodone) for
a few months. Then I add Lyrica, Horizant (like gabapentin but much better) or
gabapentin (does not get absorbed well so usually does not so well) which
enables me to decrease or eliminate the opioids. However, in England, doctors
can’t really prescribe potent opioids so you will be stuck.
Gabapentin gets poorly absorbed and the amount needed varies markedly from
patient to patient (200 mg per day to 3600 mg per day) so it is hard to answer
your question. Because of these problems (and that it is not as effective as the
other drugs in its class), I do not use much gabapentin.
Sent: Monday, August 27, 2012 5:19 AM
Subject: RLS medications
Hi, I have had RLS since I was a teenager. I have taken several meds over the
year including Sinemet; levodopa; and Mirapex. For many years I have taken
Mirapex and for the last 5 years I have been at a dosage of 1.5 mg each night.
My doctor recently asked me to try Requip. He prescribed 0.25 mg of Requip in
place of 1.5 mg Mirapex. It felt like the med was working so I went to bed at my
normal time. I had vivid horrible nightmares almost immediately. I was wide
awake before 2 o'clock and then began having intense RLS symptoms. By 3:00AM I
was having involuntary movements in my left arm and the RLS was so bad I could
not sit down.
However, the symptoms continued to increase and my legs moved involuntarily throughout the day, even when standing. I was so miserable I finally gave in about 2:00 PM and took some Mirapex. It took several hours and another tablet of Mirapex before I got any relief at all. My doctor says I must change medications because I am taking too much Mirapex. What should I do?
Sheilah M.
Medical Reply
Unfortunately your doctor does not know too much about
RLS or about the dopamine agonists used to treat the disease.
It is 100% predictable that stopping Mirapex 1.5 mg and replacing it with Requip
.25 mg would create the reaction that you experienced. Mirapex is 2-4 times more
potent (on a mg basis) than Requip therefore, the equivalent dose of Requip (to
replace Mirapex) would be 3-6 mg (or 12-24 times the dose that you were given.
In other words, you were virtually completely withdrawn from Mirapex and when no
adequate replacement is given, the RLS gets about 5- 10 times worse than usual
(and that may last several weeks or months!).
If you are stable on Mirapex at 1.5 mg (that is actually a very large dose for
treating RLS) and not feeling that the RLS is getting worse (drugs like Mirapex
can actually cause RLS to worse, called augmentation), then there is no
compelling reason to get off the drug. If you do need to get off the drug in the
future, there are ways to do it that can make it painless but it typically takes
an RLS specialist to do that.
Sent: Wednesday, August 29, 2012 9:55 PM
Subject: RLS post surgery
Hello. I have suffered very very mild RLS all my life. Recently, I got sick and
needed emergency surgery to remove and infected and inflamed gallbladder. For
the three days I was in the hospital, they had me on Dilaudid and morphine. The
weeks leading up to my surgery and the week after I was on hydrocodone. About
four days after I got home the RLS became unbearable. I constantly feel like I
need to stretch and it is now in my arms and back. I am on Requip which hasn't
seemed to help much.
My doctor is slowly upping the dose with little results. My question is could my problem be surgery related? If so what is the likelihood of it disappearing? It has been about seven weeks since my surgery.
Medical Reply
For reasons that remain obscure, it is not uncommon for RLS to worsen after trauma (such as surgery). The course of the worsening is also unpredictable but it usually is long lasting. I would not let the dose of Requip get much above 1 mg per day as the chances of augmentation increase as the dose gets higher than that limit. If needed, other medication such as Horizant may be added.
Patient Reply
Sent: Thursday, August 30, 2012 6:08 PM
Subject: RE: RLS post surgery
My doctor is reluctant to change my medication until I have tried the max dose
of 3 mg a day. The RLS is more problematic during the day and has yet to impact
my sleep. Should I attempt to find a different doctor for this problem? My
current doctor is also under the assumption this will clear up quickly and stop
as suddenly as it started, which unfortunately does not sound like the case.
Medical Reply
You may need a new doctor but you will find that very
few of them have a lot of expertise with anything but very simple cases that
respond to Requip or Mirapex very nicely. Most doctors do not understand the new
upper limit of dosing Requip or the augmentation (worsening of RLS from taking a
dopamine drug like Requip) that may result.
You may have to see a true RLS expert to get better treatment unless there is a
local neurologist or sleep specialist who is more knowledgeable. I have attached
an article that I just published that you can read and give to your doctor as a
guide. I am currently working on the second edition of one of my RLS books for
doctors which goes into the treatment in even more depth (and should be
available in a couple of months).
Sent: Sunday, September 09, 2012 12:10 PM
Subject: RLS worse since medication
I am an almost 50 year old female. I had a sleep study done a few years ago
because of extreme tiredness and snoring. I was told I did not have sleep apnea
and did not snore. (My family begs to differ!!) Anyway I was told I did have
PLMD. I was but on Requip 1mg. to help me sleep better and not be so tired. The
only thing I had ever felt till this study was an occasional creepy feeling when
I sat in a car for a very long time. I never knew I had a problem at night. Once
this medicine was prescribed things got worse. Before long my symptoms were much
worse.
My legs didn't just feel like they needed to be moved, I had this pulling from my hip down and then a jerk would happen. I couldn't get to sleep at night unless I took the meds. an hour before bedtime. Then it started earlier in the day if I sit. I am a teacher so I don't sit till late afternoon or evening. I now take Sinemet if needed in the day to drive or sit and I take Requip at night. Can't take more than 1 mg or I get extremely nauseated.
After reading all this about augmentation and rebound, what can I do to get off these meds and still be able to sleep at night???? I am very fearful of this getting worse and worse if I stay on these medications.
Lisa V.
Medical Reply
You are actually fortunate that nausea has prevented you
from taking higher doses of Requip as your problem would by now be even worse.
Treating PLM is very controversial and since it sounds like you were really not
aware of them and did not have much RLS to begin with, I would have ignored them
and not started any treatment. It is very likely that you are already
experiencing augmentation which is what is causing the earlier in the day onset
of your RLS/PLM symptoms. Adding Sinemet is a temporary solution that will only
lead to more augmentation issues.
The problem that you have now is that you need to stop all your dopamine drugs
(Requip and Sinemet) but doing so will markedly increase your RLS for several
weeks or months. We typically handle this situation with small doses of potent
opioids (methadone, oxycodone) but most physicians (even most specialists) are
not aware of this treatment or are unwilling to institute it.
After a few months, the RLS will usually calm down then Horizant (not a dopamine
drug) may be added and the opioids reduced or eliminated.
A Reply from Lisa
Sent: Tuesday, September 11, 2012 5:56 PM
Subject: Re: RLS worse since medication
I have a few questions about stopping the Requip and Sinemet. If I can get my
doctor to try this, do I quit the dopamine drugs cold turkey or slowly? And are
you saying that once I get off of these I won't need them anymore? What could I
take to help me rest well if I am not on the dopamine drugs? And what will I do
when traveling for long periods of times? Is that what the Horizant is for?
Lisa V.
Medical Reply
The dopamine drugs can be stopped slowly or cold turkey.
I typically to it cold turkey. The opioids take care of all the RLS problems
that occur once off the dopamine drugs and will keep you comfortable including
travel and other prolonged sedentary events.
Horizant is used to decrease the amount of opioids or at times (not very often)
to eliminate the opioids completely. Many patients do not even want to try
Horizant as they can get down to a low dose of the opioid which controls all
their RLS symptoms usually without any side effects.
Sent: Monday, September 10, 2012 1:06 AM
Subject: Sifrol and atrial fibrillation
I’m a member of the Swedish RLS association and would like to ask if you know of
any research about or cases of Sifrol (or Requip) causing atrial fibrillation /
irregular heart beats?
I’ve been taking first Requip Depot and then Sifrol for some years (I have now
reduced the dose to 0,18 mg), and have noticed a clear correlation between the
medicine and my atrial fibrillation (which I did not have prior to taking the
medicine). However, my doctor dismisses this and is not ready to discuss any
alternative medication.
Magnus N.
Medical Reply
We can never say that there is no connection between ropinirole (Requip) and pramipexole (Sifrol/Mirapex) and atrial fibrillation but there are no studies on this topic in the entire medical literature. Atrial fibrillation is very common so there is a reasonable chance that the occurrence of your atrial fibrillation and medications is coincidental.
A Reply from Magnus
Sent: Sunday, September 30, 2012 12:56 PM
Subject: RE: Sifrol and atrial fibrillation
Following my doctor’s advice I did not take Sifrol that evening but instead 300
mg Gabapentin. No side effects, but I could not sleep a second that night, nor
the following day or night, until I decided to take 0,09 mg Sifrol at 2 am. Then
I could soon sleep. Usually that dose will not be enough if RLS symptoms already
begun, but here it was different.
The unease in my heart disappeared – and came back when I took Sifrol again,
proving to me once more the necessity for me to stop with Sifrol… but now that
is, as you wrote, much easier said than done. My doctor did not want to
prescribe opioids, but I want to bring it up with him next week, since
Gabapentin does not allow me to sleep at all. I read that Tramadol has worked
well on RLS with a relatively few side effects and little abstinence.
Do you have any experience of Tramadol?
Magnus
Medical Reply
I use tramadol quite a lot to treat RLS. It works well for many RLS patients and tends to have much fewer side effects than the true opioids (tramadol is not really an opioid even though it is often classed with them). However, it may not be potent enough for the first few weeks or months of withdrawal from pramipexole. You can certainly try and see if it is sufficient and it may work better in combination with gabapentin or pregabalin.
Sent: Tuesday, September 11, 2012 9:13 PM
Subject: Pramipexole manufactured by Glenmark Pharma seems less effective
My wife has had RLS for years. Have you seen any difference in effectiveness of
generic pramipexole from different manufacturers? Do you have a preferred
generic brand?
For years (probably 10), my wife was able to control her RLS by taking one .25
mg brand-name Mirapex in the late afternoon. Rarely, a second pill would be
required in the evening. She would become very drowsy in the early evening,
falling asleep in her chair. She would wake up by 9:00 pm, and be alert the rest
of the evening.
When generic pramipexole became available several years ago, our prescription
drug insurance required her to switch to the generic. She was still able to
control her RLS with one .25 mg tablet/day. She still dozed off in her chair in
the early evening. The pharmacy says they were using pills manufactured by Teva
at this time.
Several months ago, my wife began having to take two .25 mg pills every day, and
control of her RLS was not as effective as previously with only one pill. She no
longer dozes off in her chair, but remains alert all evening. I checked with the
pharmacy, and they said they switched to Glenmark Pharma in March, 2012, for
generic pramipexole; it is no longer available from Teva. She describes the
Glenmark pills as some seem to work effectively, and others seem to have no
effect on her RLS. Something is different in the Glenmark pramipexole as it
seems to be less effective.
The pharmacy can order pramipexole from Sandoz or Mylan, and I will still get
insurance coverage. I plan to do this so we can see if it better controls my
wife's RLS. (If I request brand-name Mirapex, I will have to pay the full price
without any insurance coverage.)
Jim P.
Medical Reply
Most patients do not notice any difference between the
brand name pramipexole and the various generics. However, I have had a few
patients who have noticed that some generic brands that are not as effective as
the brand name one. I have noticed whether one generic brand is worse than the
others but I have not been paying much attention to that issue.
Although it is certainly possible that this is due to a poorer acting generic
pramipexole formulation, it is also possible that she is suffering from
augmentation and her need for pramipexole has thus increased. The only way to
prove this hypothesis would be to see if she improves with the re-institution of
brand name pramipexole or a more potent generic version.
Sent: Tuesday, September 11, 2012 10:36 PM
Subject: RLS and PLMD
I suffered for a year before I realized I had RLS. My sleep apnea doctor
immediately prescribed Mirapex which has been a miracle drug and has changed my
life. However, after several months the Mirapex began to not work. My doctor put
me on Klonopin but it isn't helping at all. Should I go back on the Mirapex?
Richard C.
Medical Reply
Klonopin is not an RLS drug but rather a sleeping pill
that just helps RLS patients sleep. In addition, there are much better sleeping
pills than Klonopin which has a 40 hour half-life and can often cause next day
sedation.
Since the Mirapex stopped working, it is possible (and maybe quite likely) that
you are suffering from augmentation of RLS (a worsening of RLS from taking a
dopamine drug) and restarting Mirapex may ultimately worsen your problem.
A better choice would be Horizant.
Sent: Thursday, September 13, 2012 5:52 AM
Subject: opioids and depression
I am 64 years old and currently taking 2.5 mg to a maximum of 7.5 mg of
oxycodone a night, at bedtime only, to relieve my RLS symptoms. Along with the
oxycodone I take 50 mgs. of Wellbutrin for depression which I have been taking
for about 2 years. I got on the Wellbutrin per my psychiatrists recommendation ,
2 years ago when I was extremely depressed detoxing from Clonazepam, which was
prescribed to me for RLS. The depression was severe and along with the
Wellbutrin he added Nortriptyline which seemed to help, but since I have always
suffered from mild to medium depression, before the Clonazepam withdrawal, its
difficult to recall just how much it helped.
Regardless , I had to stop the nortriptyline in order to take another series of
tests, and not wanting to be on any more drugs than necessary, I have stayed off
the Nortriptyline , but continue to take the Wellbutrin. My reasons for staying
off the Nortriptyline were supported by the side effects I had with it also. Dry
mouth and felling light headed when I would stand up quickly. Nothing horrible ,
but nagging just the same.
I have been off the Nortriptyline for 4 to 5 months, and its just been recently,
about 4 to 7 weeks, that I have been taking the oxycodone on a regular basis. I
try to take 2.5 mg. on odd nights, but most often its 5 mg at bedtime. I never
take any more than 7.5 mg on any given day.
My question, based on your experience, is can the combination of dropping the
Nortriptyline and increasing the frequency of the Oxycodone be contributing to
an increase in my depression. Also, at the level of intake of the oxycodone,
should I be worried about tolerance/addiction. And finally would you suggest I
reinstate the Nortriptyline to see if the depression decreases.
Neither of the doctors I see are skilled in RLS treatment, and there is not a
good RLS specialist anywhere in my area, but my main doctor knows I am a
tenacious researcher (I have read nearly every letter anyone has sent you on the
RLS site along with your first book), and is generally willing to follow the
information I supply him based on my research.
John E.
Medical Reply
It is impossible to be sure what is causing your
depression but you are correct that both dropping the nortriptyline or
increasing the oxycodone (or both together) may have worsened your depression.
Nortriptyline is one of the few older antidepressants that does not worsen RLS
but it is not used very much these days as it is not as effective as the newer
drugs and has more side effects (which you have already found out). You may want
to consider increasing the Wellbutrin (if you are tolerating it well) as you are
on a low dose.
It is always possible that the oxycodone is causing depression (I have a few
cases of that happening) but the only way to prove that would be to stop the
drug and that would be a rather difficult experiment right now for you. If your
depression came on soon after increasing the oxycodone, then that would make it
more likely to be responsible for causing it.
Although tolerance/dependence is always a concern, if you have no history of
drug abuse and take only enough oxycodone to relief most of your symptoms, it is
very unlikely that you will have any such problems.
Sent: Saturday, September 15, 2012 2:26 AM
Subject: Help! Doctor (country) with limited knowledge!
Please bear with my grammar since English is not my main language. I hope you
are willing to help me anyway.
I've suffered from RLS as long as I can remember, but the last few years it
really has gotten worse. I have really bad pain in my legs pretty much 24/7.
When it's as it worse I also feel it in my arms. Of course it's also effecting
my sleep a lot. As a Swede living in Bali I find that the knowledge about RLS
here in Indonesia is very limited. How ever I have found a neurologist who is
willing to work this out together with me.
I have so far tried Madopar and Sifrol. Result: pain getting much worse. Then
I've been on Lyrica with no effect at all. I started of on 75 mg two times a
day, then three times a day and since it didn't help we raised the dose to 150
mg twice a day, which just made me really dizzy and sleepy. So my doctor
prescribed ms Contin 15 mg. It takes a long time before it relief the pain, and
then it will only be effective for maximum eight hours. I also got fentanyl
patches 25 mcg. They make me feel good but also here the problem is that they
are only effective for 48 hours, not 72 as they should be. Any higher dose will
make me sleep most of the day...
Now I finally found this site and read that morphine and fentanyl is not
recommended to start with. I've also since we started try out medication been
taking 25 mg amitriptyline before I go to bed. It really makes me sleep easier.
But then I read that amitriptyline might worsen the RLS-symptoms. So even if I
feel better at night, maybe it makes it worse during the days?! So now I wonder
what medication (opiate?) I should suggest for my neurologist to try next? And
at what dose? At 27 years of age I'm so scared of these medicines. My
grandmother also had severe RLS and got addicted to opiates. I don't want to get
there, but as it is now my life is not easy to live.
Also, what could I try instead of the amitriptyline at night? I've already tried
150 mg Lyrica, and it sure make me fall a sleep a lot easier but when it's time
to get up in the morning I'm still sleepy and can not manage my daily activities
including two toddlers.
Eva O.
Medical Reply
You are correct that we do not start with opioids but
you have already failed the dopamine drugs and Lyrica. The opioid of choice for
most specialists is methadone. Typically, 5-10 up to 3 times daily may be needed
but one should always try to find the lowest dose that works.
Tolerance/dependence (addiction is a social issue) is unusual as long as you try
to treat about 95% of so of the symptoms and not over-treat.
Although amitriptyline generally makes RLS worse, some patients seem to do well
with the drug so there is no great reason to stop it. If it worsens RLS
symptoms, it does so immediately and only for about 6-8 hours after the
medication is taken.
Sent: Sunday, September 16, 2012 9:13 AM
Subject: Mirapex rebound
I have been having trouble after taking Mirapex with tingling all up my spine
and down my legs- walking and standing up are the only things that help. I
take the lowest dose at bedtime with a half of Vicodin. I don't like to take
anymore because I get dopey the next day with drugs. I read that Lyrica
makes one gain lots of weight and have read so many negative things about it
plus it is extremely expensive. It sounded great at first as it is an
anti- depressant and solve the aches and restless leg problems.
I have been taking Mirapex about 5 years now. Any info about Lyrica would be helpful.
Linda B.
Medical Reply
Lyrica works well for many RLS patients but as you have
pointed out, it is not for everyone. Weight gain and sedation can happen (in
which case you just stop the medication) so it is worth trying. The drug that is
similar and also approved by the FDA (so may be better covered by your
insurance) is Horizant. However, it does have some of the same concerns as
Lyrica.
The real problem is that you are likely experiencing augmentation (worsening of
your RLS symptoms from taking Mirapex) and the real solution would be to get off
the drug (which is very hard to do and takes a physician who is quite skilled in
treating RLS).
A Reply from Linda
Sent: Tuesday, January 10, 2012 7:11 PM
Subject: best mild antidepressant for patients with RLS?
What would be the most mild anti depressant to take with RLS. I know several
make the condition a lot worse.
Linda B.
Medical Reply
Wellbutrin (bupropion) is the best antidepressant for RLS patients as it does not worsen RLS. However, it may not be the most potent antidepressant for your depression. Otherwise, all the other antidepressants are equally bad for making RLS worse.
Sent: Monday, September 17, 2012 5:30 PM
Subject: PLM
I went to a Sleep Lab last year for Sleep Apnea, but found out I have a mild
case of apnea that only appears in REM sleep but have 30 kicks an hour. They
said that was why I was so tired and headachy. I’m on 1 milligram Mirapex two
hours before bed. At first I felt better than I had in 3 years but now I’m
waking up at night and take an Ativan to get back to sleep. After reading your
website I think I’m doing a lot wrong and that my primary doctor must not be
familiar with PLM since I’m also on Zoloft.
I’m in Southern California and my insurance is Kaiser
and they don’t cover Formulary Mirapex XL or Requip XL. I seem to be building a
resistance to Mirapex. Where do you suggest I start to improve my sleep and
health?
Jo A.
Medical Reply
The issue here is much more complex that it seems on the
surface. PLM (Periodic Limb Movements or the leg kicks) may very likely be due
to your Zoloft and have nothing to do with any other underlying problem.
Furthermore, other than stopping the Zoloft (and even that may not be
necessary), it is most probable that treating the PLM should not result in any
benefit. Many of the RLS/sleep experts are very doubtful that PLM should almost
ever be treated.
Even though Kaiser does not cover Mirapex ER or Requip XL, there would likely be
no reason to use those drugs. The answer to your question about how to improve
your sleep may take quite a bit more evaluation and expertise than you have
received so far.
Sent: Wednesday, September 19, 2012 5:20 AM
Subject: RLS and Horizant treatment
I have had primary RLS for about 25 years now. I have gone through many
medications to treat this condition, then after developing a resistance to the
drugs or being allergic to them (opioids). I have to try something else. I have
taken Requip for about 8 years now and have developed a resistance to the drug.
My doctor has started me on Horizant 600 mg once a day at 5:00 P.M. to give me a
"drug holiday" from the dopamine type drugs. I have taken this for 2 days now
and haven't had much relief from symptoms at night. It does help during the day.
I read a report on the internet that the recommended dose is 600 mg once a day for 4 days and then to take it twice a day, once in the morning and then the evening dose. I am not sure weather to trust all the information I read on the internet so am wondering if this is correct or if the Horizant just isn't going to work for me. I am seeing my doctor later this afternoon and will talk to him but did want your take on this difference on the dosage.
Jane
Medical Reply
There are a few issues with your case which make it more
complex than you or your doctor realize.
The resistance that you are experiencing to Requip may be caused by augmentation
which is a worsening of RLS due to taking a dopamine drug like Requip. Although
one of the best treatments for treating this problem is stopping the Requip,
doing so will markedly worsen your RLS and Horizant is typically not potent
enough to handle that situation. Usually opioids are used for accomplishing the
withdrawal from Requip (that may last a few months) but you have had allergic
reactions to this class of drugs which complicates the problem.
Horizant is used at higher that FDA approved doses by RLS experts and can be
increased to 2 or even 3 per day. These can be taken together or in divided
doses depending upon the situation and needs of the patient.
Sent: Monday, September 24, 2012 8:38 PM
Subject: RLS and Neuropathy
I have had RLS for about 10 years , finally about 5 years ago a new doctor
diagnosed me with RLS and prescribed .10 mg.Clonazepam at bedtime. This has been
a life saver ! Sometimes I have to take an extra .5, but usually the .10 works.
I also take 60 mg. Cymbalta for anxiety.
For the past couple of months I have been experiencing
neuropathy in both feet- numbness , burning and some tingly pain on the soles of
my feet mostly at night. I am otherwise a healthy, active 59 year old female.
Is there any relation between the RLS and now the neuropathy ? I am very
worried!
Luann M.
Medical Reply
Neuropathies seem to be more common in RLS and also RLS
occurs more commonly in patients with certain types of neuropathy. The
connection is not well understood and is based mostly upon our observations of
the two problems coexisting.
Clonazepam is not an RLS drug. It is used for its sedative properties as a
sleeping pill. However, it has a 40 hour half-life (that is how long it takes
the body to remove half of the drug you have taken) so it may cause next day
sedation (often the user is not aware that this is happening). Shorter acting
sleeping pills like Ambien or Lunesta are much better choices and
tolerance/dependence does not often occur with these pills compared to the much
more frequent occurrence with clonazepam.
Cymbalta often worsens RLS but if you are doing well with this drug, perhaps it
has not affected your RLS.
Horizant would be a much better choice as it should relieve your RLS and help
you sleep without any concerns of dependence/tolerance occurring.
Sent: Thursday, September 27, 2012 8:06 AM
Subject: Problems with my RLS
Back in March I had my 2nd. hip replacement surgery, which went well, except it
has been much harder on my legs than the previous surgery. Perhaps because I had
a "spinal" instead of full anesthetic. Consequently, the RLS became much worse.
I had to increase the dosage of ropinirole from 2-3 tablets a day to 5-6. Within
a very short time the higher dosage sent me into augmentation. I was in big
trouble and wrote to you at the time, as I really needed help, and my doctor did
not understand the problem . Your answer and help was indescribable! I still
thank you many times over!
My problem now is the pramipexole. I take 0.25 mg twice a day. This is fine as
far as the RLS goes but the side effects are worrying me. Do they affect the
heart? I have much to deal with in my family right now as my husband was
diagnosed with bladder cancer and has been on chemo treatments all summer. He
has done very well and the chemo treatments have finished.
Still, this has been difficult. The RLS is one thing,
but I also find the pain in the legs very difficult to deal with, which is why I
am writing to you for help. At this point I am at a complete loss at to what to
do. My doctor quite reluctantly prescribes tramadol when I ask for them for pain
but honestly, it feels like pulling teeth! His answer to my pain is that I
shouldn't have any now that both hips have been replaced. As said before, he
does not understand RLS ( I am his only patient with this condition), and quite
ignores the fact that my legs have been badly affected by the second surgery,
causing a lot of pain. I also have extensive osteo-arthritis in the lower back.
Today I have an appointment with my doctor and I shudder by the thought of it
because I do not know what to ask for! I do need help because the body feels in
" unrest" mode almost all the time. It seems to me that the RLS does not just
affect the legs but the whole body! I get by on very little sleep as the body
does not relax and will wake me every few hours. Usually I sleep for 4-5 hours
all told, other times hardly at all. Being age 73 tells me that that is OK, but
actually it isn't. My husband is 82 and always sleeps 9-10 hours, sometimes
more!
Rohanna R.
Medical Reply
Pramipexole should not affect the heart.
Your doctor has many more RLS patients but he is not aware that they have RLS.
Studies have shown that about 10% of primary care doctors’ patients have RLS but
few are diagnosed (even when they complain about their symptoms).
You might want to see a pain specialist who may treat your arthritis problems
that are likely worsening your RLS. The pain specialist may also prescribe
opioids that will help your pain and RLS. Alternatives include Horizant and
Lyrica which also may help pain and RLS.
Sent: Friday, September 28, 2012 7:19 PM
Subject: Need help
I was diagnosed in the late 90’s after suffering for years. I believe I took
Sinemet (Carbidopa-Levodopa) first but my second drug used was Mirapex. My
doctor just switched me to Requip possibly 5 years ago and everything went along
great until a few months ago. It seems all of a sudden it makes me extremely
nauseous. I also have to take iron at night and at first I thought it was the
iron but after taking each separately I could tell it was the Requip. I just
quit. I had no idea there was any withdrawal and I don’t know if I suffered from
withdrawal symptoms.
I started using a new iron and I believe it was a cheap kind. I had weight loss surgery 11 years ago and I need to take iron because I don’t absorb it well. That surgery and the outcome was wonderful. Now my RLS is totally off the charts. I am getting a test next week to find out if my iron is low. I almost hope it is since that can cause RLS to be worse. I’m hoping it would improve if my iron comes back up.
Tonight I am trying Mirapex again to see if I can get
relief. Have you heard of someone using Requip for 5 or 6 years and all of a
sudden it makes them horribly nauseous? I even tried taking a break and going
back to it and it still makes me ill. My doctor knows nothing about RLS. He’s
just prescribing it because it was what I took when I started going to him. I
was without medical insurance for a while.
I cannot think of any reason the Requip made me sick. I did read your section
about how I should not take Wellbutrin with Requip. I’m pretty positive I was
taking Wellbutrin and Requip for some time before I started getting sick from
Requip. Should I try to get off the Wellbutrin? Perhaps the Mirapex will work
tonight and I can just switch back. Any light you can shed on why Requip
suddenly started making me vomit would be very much appreciated. I am so
grateful I found your site.
Yvonne M.
Medical Reply
It is very uncommon for the side effect of nausea to
develop after several years of being on a stable dose of Requip. Typically, this
might occur if you are taking another drug that interacts with Requip (makes its
level go higher, but there are not too many drugs will do that). Mirapex might
then cause the same problem.
I am not sure what you read about Wellbutrin and Requip as they can be taken
together and typically do not cause any issues. For temporary relief, you can
have your doctor prescribe Zofran as it does not worsen RLS as does most other
anti-nausea medications. If the problem persists, you may consider Neupro or
Horizant.
You should note that oral iron can also cause nausea.
A Reply from Yvonne
Sent: Saturday, September 29, 2012 9:56 AM
Subject: RE: Need help
WOW! Thank you for your immediate help.
I thought it was strange that I suddenly started getting
sick from the Requip (actually Ropinirole). I’ve been taking iron at night the
entire time I’ve taken Requip. Like I said I switched to a liquid iron that
tasted better but I really think it wasn’t nearly what I needed. I did get sick
from the Requip before I switched the kind of iron I was using so nothing makes
sense. The good news is the Mirapex I took last night worked great! I didn’t get
sick and my RLS was under control.
Yvonne M.
Sent: Monday, October 01, 2012 12:48 PM
Subject: Help for my Mom's RLS
My mom has been suffering from RLS for over 25 years, and she is now 56. She was
on Mirapex for a lot of years, and the doctor had her taking up to five pills a
night for her RLS. While the Mirapex was effective for her RLS, she also
developed a gambling addiction. She went from being a successful career woman to
having nothing. She is finally getting back on her feet again, but can't seem to
find the right medication to work for her.
When she went off of the Mirapex, the doctor started her on Methadone. This
worked for a little while, and it almost seemed that the RLS went away. She
could even go days without using it. She was also taking Cymbalta for depression
during this time because of her divorce. After a while of taking methadone, it
started to give her shortness of breath. Once her divorce was final, she lost
her insurance coverage, and the doctor changed her from Cymbalta to Prozac.
After a few weeks of this, she started having panic attacks, couldn't breathe,
and couldn't sleep. She even went to the Emergency Room because she was so panic
stricken that she was going to stop breathing. The E.R. doctor told her to stop
the Prozac and Methadone, and follow up with her neurologist.
We went to the neurologist last Monday. The Doctor wasn't sure what to
prescribe, but decided on Sinemet. She told my mom to take 1/4 tablet for one
week, 1/2 tablet the second week, 3/4 tablet the third week, and 1 whole tablet
the fourth week. My mom started this process for a few days, and the medication
provided no relief at all. 3 days in, she tried a half of a pill, and still was
up all night. By the end of the week, she tried a whole pill, and still nothing.
She got so desperate for sleep, that she took one of her old Mirapex pills.
Today, she called the doctor's office, and the nurse
said the medication didn't work because she didn't take it as prescribed. I have
read, and the doctor actually told us in her office that the medicine should
work immediately, and doesn't take days to go into your system. She told my mom
that she should now take 1/2 pill for 3 days, 3/4 pill for 3 days, and 1 pill
for 3 days. My mom is so upset, because she knows that she will be without sleep
the next nine days. I have also read in a few places that the Sinemet has a 70%
chance of causing augmentation. I haven't told my Mom this part, because she is
so upset by all of this.
Amy P.
Medical Reply
Your mother clearly has a difficult case of RLS to treat
due to her intolerance/side effects from several medications and her anxiety
issues.
Most anti-anxiety/antidepressant medications (like Cymbalta and Prozac) tend to
make RLS worse so that may be another issue. Wellbutrin does not exacerbate RLS
but may not help her anxiety problem. You are quite correct to be concerned
about Sinemet although the chances of augmentation are likely over 90% when it
is taken on a daily basis.
Her breathing problem may have nothing to do with methadone but rather related
more to her anxiety issues. It might be reasonable to try another opioid like
oxycodone or even a lesser one like tramadol (this may not even be a true opioid
and has less concerns but is also less potent).
Lyrica is another choice as it is not a dopamine agonist (so no issues with
gambling) and may also improve anxiety.
I do not know of any true RLS experts in your area but you may want to check to
see if there are any specialists who see a lot of RLS patients.
A Reply from Amy
Sent: Tuesday, October 02, 2012 11:17 AM
Subject: Re: Help for my Mom's RLS
I can't thank you enough for taking the time to help us out. I talked to my mom
today, and I think the medication is doing just what you said it would. She said
last night it went to her arms, which it has never in her life done before. We
are going to go back to the doctor as soon as possible, and talk to her about
the Lyrica.
Amy
Sent: Monday, October 08, 2012 7:16 PM
Subject: RLS suddenly stopped
I have been on Requip for 8 years. And due to moving across multiple states and
have been receiving my scripts thru mail-order I find myself without my
prescription for the next 1 ½ weeks. What can I expect from a withdrawal
perspective? Would I be better increasing Klonopin or Vicodin to help me
through? I have a severe case.
Side note: thank you for your confirmation that Sinemet makes your restless legs
worse. In 2003-3004 doctors kept increasing my dose as I kept telling them my
RLS was getting worse. I was taken 10 pills per night, and started to go to the
emergency room because I was in so much pain. I have read the doctors note and
they thought I was a hypochondriac and imagining the pain. One neurologist said
I (yes me, I) had become addicted to Sinemet. The insurance company would not
pay for a hospital stay to get me off the drug, the plan to get me off the drug
was going to take 8 months. I took $35,000 and checked myself in to a small
clinic to get me off that horrid drug
I have carried the stigma of those doctors thinking and treating me like I was
crazy when I kept telling them I was in such intense pain due to Sinemet. So
thank you, thank you, thank you.
Penny F.
Medical Reply
Sorry to hear that you spent $35,000 going to a clinic
to get off Sinemet. Typically, RLS doctors who know what they are doing could
have taken care of that through a few office visits for a minimal charge
(covered by insurance).
Unfortunately, once on a dopamine agonist like Requip, going off it suddenly
will cause a marked increase in RLS symptoms very quickly. These symptoms will
be much worse than your RLS was before you ever got on dopamine drugs. Vicodin
should be very helpful and Klonopin will help you get to sleep.
However, if you read my website, you will not that Klonopin has a very long
half-life (over 40 hours) and thus stays in the body long enough to cause
impairment during the daytime (most often not appreciated by the user). There
are much better sleeping pills (Klonopin is not an RLS drug) that are much
shorter acting.
Sent: Friday, October 19, 2012 3:43 PM
Subject: Fitbit
You have all been such a help to me over the years. I recently found a great
tool for tracking PLMS. It is called a Fitbit and measured the movements during
the night. About $90 on Amazon and now I have some objective feedback about what
happens when I am asleep. I hope this helps someone!
Alexandra H.
Medical Reply
I will post this on our website.
Sent: Monday, October 22, 2012 8:54 AM
Subject: RLS augmentation with Mirapex
I read your forum and find it extremely helpful. I began taking Mirapex
(pramipexole, gen.) a year ago because I made the mistake of mentioning to my
neurologist that I occasionally have restless legs. He prescribed Mirapex and it
worked fine for awhile. Then my RLS became much worse. Now my life is centered
around RLS anytime I sit for a few minutes; worsening of RLS when I take the
Mirapex and some relief after an hour or so. Sleeping is very difficult, my
pattern now is 5 or so hours a night for several nights and then a good night
sleeping, then the wakefulness again. I have such strange dreams that I often
wake up exhausted from them; I am extremely nervous, overeat bad foods and want
very much to get off Mirapex. I tried once cutting back and walked the floor for
three nights before giving up and taking the med again.
I should never have started the Mirapex in the first
place; but how do I get off it? What would you suggest as a medication to take
while I try to wean myself off Mirapex? I also have a problem with dropping off
to sleep and not realizing I have been asleep until I see by the clock that time
has passed. Traveling long distances in a car is agony. Any advice you could
give would be greatly appreciated.
Lilly P.
Medical Reply
Unfortunately, you have developed augmentation from
Mirapex and stopping the medication will make your RLS markedly worse for up to
a few months. The only treatment to make this happen without causing those
months of worsening RLS symptoms, insomnia and general discomfort is using
potent opioids. Under the care of a doctor who knows how to treat augmentation
and use opioids, getting off Mirapex can be accomplished with relative ease
comfort.
The hard part is finding a doctor capable of achieving the above as few doctors
are knowledgeable about treating RLS in general and augmentation in particular.
A Reply from Lily
Sent: Sunday, November 04, 2012 12:55 AM
Subject: RLS & Mirapex augmentation
My neurologist does not believe that I am experiencing augmentation from using
Mirapex. Since I want to stop the Mirapex, he prescribed Ambien to help me sleep
while I reduce the Mirapex. The Ambien hardly touches the wakefulness,
restlessness, itchiness and uncontrolled movements of the Mirapex. Could
increasing the Ambien dosage help, do you think? His denial of what I am
experiencing is maddening.
Lilly P.
Medical Reply
There are really only 2 possibilities here:
1) You did not describe your symptoms and problems with Mirapex and RLS
correctly.
2) Your neurologist does not know what augmentation is and how to treat it.
With augmentation, it would be very unlikely that Ambien would be more than
minimally (if at all) helpful.
Sent: Monday, October 22, 2012 7:31 PM
Subject: RLS/PLM
I have restless leg syndrome and extreme periodic limb movement – left leg
starts jerking uncontrollably as soon as I sit and relax my muscles. Once
started they happen even when standing. Jerks happen about every 6 seconds, the
same as muscle twitches that showed on the sleep test (every 6 seconds) The
jerks are very extreme – I feel an electric type flow in muscles of leg and then
it jerks. I can’t hold the leg down with both hands it jerks so hard. Went on
Mirapex and gabapentin for this and helped at first – augmentation seems to
happen now, after about 4-5 hours sleep muscles start burning in both legs and
start to need to stretch, ( this wakens me from sleep constantly).
Am taking 900 mg of gabapentin at night and am down to 0.5mg Mirapex. If stopped the jerks become unbearable and cannot get sleep. I’m getting side effects of sadness and unable not to cry over small things, which has never been a problem before. Have tried sleeping pills before taking gabapentin and Mirapex but the weepiness happens after about 3 nights of them. Can’t get in to see neurologist for about 6 months and feeling quite desperate. What are the alternatives to these drugs?
Lynn
Medical Reply
You have several issues occurring at the same time. Your
depression is coming from the gabapentin and since it can cause very severe
problems, it is best to get off that medication. It may also rule out using
Horizant and even Lyrica as they act upon the same receptors.
You also have to deal with the augmentation from Mirapex which requires getting
off the drug. To do so will require using a potent opioid (which most doctors
are not aware of using and comfortable using which likely includes the
neurologist that you are waiting 6 months to see).
Waiting 6 months to see a neurologist is incredibly unreasonable. If you have
HMO insurance, you must complain much more and loudly until you get a more
timely appointment (like 1 week). I you do not have HMO insurance, then get a
referral to another neurologist/sleep specialist who treats tough RLS cases ASAP
(even if it means traveling a little farther).
Sent: Monday, October 29, 2012 7:49 AM
Subject: RLS-MIRAPEX
I've been taking MIRAPEX .75 mg per day (not the generic) for approx. 10 years.
I'm trying to get off of it. I started taking HORIZANT a few days ago, and
completely stopped taking the MIRAPEX. I've been MISERABLE....no sleep for 4
nights in a row. Am I having withdrawals from the MIRAPEX or is it the HORIZANT?
If you have any information/suggestions I would appreciate your help so much.
Joy Z.
Medical Reply
You are on a high dose of Mirapex and stopping the drug
will result in a marked worsening of RLS symptoms (even worse if the reason that
you are stopping the drug is augmentation). Horizant is a very good RLS drug but
not equal to addressing the “withdrawal” period from dopamine agonists like
Mirapex. Typically, only opioids address this dopamine withdrawal problem which
may take a few months to resolve.
After a few months, Horizant may be added and help reduce or eliminate the
opioid.
Sent: Wednesday, October 31, 2012 2:39 AM
Subject: RLS
I am a 60 year old woman who was diagnosed with breast cancer in 2009. I was on
Femara for 3 years, but because of side effects I am now on Tamoxifen. I also
put on an SSRI for depression during my treatment. I have discontinued the SSRI
about 6 months ago but during the treatment period developed RLS – I am now
aware that the SSRI can worsen symptoms on RLS. Does the RLS continue after SSRI
treatment has been discontinued?....mine has.
My doctor prescribed Requip but I am suffering with
continued symptoms and insomnia. Does the Mirapex cause the augmentation that
Requip does? Also, my FP has given me a Rx for phentermine for weight loss,
since the Femara/Tamoxifen have caused a 35 lb. weight gain. Is is safe to take
both phentermine and Requip or Mirapex. I have not yet started the phentermine.
As an aside, I also take Nexium, Lipitor, Actonel and Xyzal.
Claudia Y.
Richmond, VA
Medical Reply
Typically, the worsening of RLS from taking and SSRI
goes away when stopping the drug. Therefore, there may be other issues involved
or your case is somewhat unique.
If Requip has caused augmentation then it is a good bet that Mirapex will likely
do the same. The new dopamine agonist drug Neupro has much less issues with
augmentation and may be a good choice. Horizant is a non-dopamine drug (so no
chance of augmentation) but has been associated with weight gain (not uniformly
but does have an increased risk of that happening).
If those drugs don’t work, then there are others. The phentermine has no affect
on RLS but may not be a great choice as the weight loss is modest at best and as
soon as you stop the drug, the weight comes back (and I doubt that you want to
be on that drug forever). The other drugs are fine with RLS.
DISCLAIMER
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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Source: Southern California Restless Legs Support Group,
Patient Letters and Medical Answers Section, Page 102.
http://www.rlshelp.org/rlscomp102.htm
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