Sent: Tuesday, March 01, 2016 8:03 AM
Subject: Question about Ropinirole
I've suffered from RLS since I was a teenager, and I will turn 60 this year. For
about the past 5 or 6 years, I've been taking Ropinirole at what I consider a
very low dose – 1mg/day. The actual prescription is to take it three times per
day, but since the single tablet works (after I wait about 2 hours), why take
more? As an aside – the single tablet stated working for me within ten minutes
when I originally started taking it, so I assume I've built up a tolerance. I
imagine at some point I will need to take more than one tablet per day.
Ever since taking the Ropinirole, I've found that I have a case of violent
vomiting about every 2 or 3 months, usually within an hour or two after I've
taken the pill for the evening. I had never experienced this in my life until
taking the Ropinirole. (It took me a while to make the probable connection.) Is
it possible that the drug "builds up" until your body takes command and forces
it out? I've noticed that vomiting is one of the side effects, but seems to be
an uncommon one, and haven't (easily) found other people mentioning this. I
can't imagine my life without Ropinirole, though, so will put up with the
occasional bout of sickness.
Parkinson's Disease runs in my family (paternal grandmother and my father). Does having RLS, and family history of Parkinson's, pretty much guarantee that I'll eventually suffer from Parkinson's? The two conditions seem so closely related.
Peggy
Medical Reply
Ropinirole does not build up in your body as it has a
half-life of about 6 hours (which means it gets metabolized fairly quickly and
will not accumulate unless you have liver problems). Although 1 mg/day is a
relatively low dose (it is approved up to a maximum of 4 mg/day), I currently
recommend not to exceed that 1 mg/day as augmentation (a worsening of RLS due to
taking a dopamine drug like ropinirole) very often occurs with time and is dose
related.
Nausea is a side effect of ropinirole and taking it with food will reduce this
problem but will delay the onset of action of the drug by about 1 hour. Since
this happens quite infrequently, it is somewhat difficult to be sure that
ropinirole is actually the culprit as it should then happen almost daily (which
is what I see with my patients who have nausea with ropinirole). Rather than
increasing the drug in the future (which is what most doctors who are not expert
in RLS would do), it might be better to add another drug like Horizant,
gabapentin or Lyrica.
Having RLS does not increase your risk for developing Parkinson’s Disease in any
way.
A Reply from Peggy
Sent: Wednesday, March 02, 2016 9:00 AM
Subject: RE: Question about Ropinirole
The idea of taking the Ropinirole with food is interesting, because in my case,
if I take it too close to eating, I am way more likely to get sick. As for the
dosage, do I understand correctly that even rather than (if necessary)
increasing the Ropinirole up to the prescribed total of 3 mg/day, it would be
better to add one of the drugs mentioned to my current 1mg/day? I will delay
this as long as possible, to be sure, but just want to confirm this is your
suggestion, for a future discussion with my doctor.
Thanks, too, for the statement about Parkinson's. I am so happy to hear the RLS
won't be the lead in to PD. I hope to dig deeper on your website very soon.
Peggy
Medical Reply
I currently do not like to even start my patients on
short-acting dopamine drugs like ropinirole and pramipexole. However, if you are
already on the ropinirole, you should try not to go over 1 mg/day. That should
significantly reduce the risk of developing augmentation from the drug.
Therefore, adding another drug would be a very good idea rather than increasing
the dose of ropinirole.
Sent: Thursday, March 03, 2016 5:21 PM
Subject: RLS treatment?
I have severe RLS which is bad during the day as well as at night. Nucynta along
with Neurontin (gabapentin), an anti-seizure medication, are extremely
effective, although I hate the stigma of taking a narcotic long-term. My Dr is
wonderful and sees me monthly due to state laws. I now seldom have break-through
symptoms, and find Ambien helps on those nights. Exercise or stretching is
helpful. My grandmother & 4 of her 5 daughters have/had RLS, including my
mother.
A supportive spouse is essential for me. We are in this together. Now my 36-year-old has symptoms but is so active he doesn't require medication....yet.
Is quinine really helpful? Are the side effects dangerous?
Phil
Medical Reply
Sounds like you are doing well with your current
treatment.
Quinine is not helpful at all for RLS. It may help prevent leg cramps but has
not role for treating RLS.
Sent: Friday, March 04, 2016 12:35 PM
Subject: RLS and getting off Ropinirole
I am a 72-year old woman who has had RLS off and on for several years and it
gets progressively worse! It started to worsen and be more frequent about 4
years ago and about 3 years ago I sought help from my Primary Care Dr. who gave
me 2 mg. of Ropinirole at bedtime...this was HEAVEN for one month and then it
was just like I was not even taking anything! The Dr. then sent me to a
Neurologist as well as a Vascular specialist to see if there might be other
problems. The Vascular specialist did all kinds of tests and said my circulation
was great and that I did not need him!
The Neurologist just said I probably just needed a higher dose of Ropinirole and
increased it to 3 mg. at bedtime...that did not help at all...the RLS was more
intense and the Neurologist just said I was not giving the medication time
enough! So I waited a period of a few weeks and returns to my Primary Dr. who
then suggested I might want to try a different Neurologist...which I did and he
did nerve conduction tests, MRI, etc. and said I needed to increase my dose to 3
mg. twice a day as well as take Naproxen twice a day and Lyrica twice a day! I
tried that for a few days and WOW...I was a zombie...I could not function taking
that much medication and did not have RLS but felt AWFUL!
When I returned and told the Neurologist he just shook his head and said I might
want to try exercises and he demonstrated by throwing himself down on the floor
and doing about 20 modified push-ups! I then shook my head at him and reminded
him that I am a 72-year old woman with a bad back, knees and legs and IF I could
get down on the floor like that I would not be able to get back up without
calling for help! He felt I was being unwilling to follow his suggestions...so I
did not return to see him again! He had also had me try Baclofen which did
nothing for me! I have also tried Gabapentin and Lyrica which do not stop the
RLS and they make me feel drugged!
The Ropinirole eventually stops the RLS...but it almost always gets worse for
about 1-2 hours before it stops! My evenings are miserable and now it is
spreading into the daytime hours as well! Sometimes when it is really bad during
the daytime I take 1/2 of the 3 mg Ropinirole and it usually gives me relief
within about 1 hour...but it makes me really sleepy and I have to sleep for at
least 30 minutes to one hour for relief!
After extensive reading I feel that I REALLY NEED to get off of the Ropinirole
but so far I have not found a Dr. who is willing to help me with that...they
maintain that I need to continue with the Ropinirole! Do you have any
suggestions as to how I can get myself off...can I do it by just cutting down on
the dosage? If not, do you have any suggestions of how I might find a Dr. who is
knowledgeable enough to help me get off this medication?
I feel that it is harming me in all sorts of ways....I just feel terrible most
of the time and have gained MANY pounds since taking it and I am very forgetful
where I was not just a few years ago! I am told that is my age...and yes, maybe
it is just a result of my age...but I truly feel it is the medication and I
really want off it! Thanks in advance for any help you can offer.
Linda
Medical Reply
You have a clear case of augmentation (a worsening of
RLS from taking a dopamine agonist like Requip/ropinirole) and getting off the
drug is the correct solution. It is too bad that most doctors, even specialists
have no clue how to treat difficult RLS cases and especially augmentation.
Although it is possible to get off the ropinirole on your own, it would be
extremely difficult and your RLS will get dramatically worse for about 2 weeks
(you may not be able to sleep at all). This processed can be made markedly
easier with proper treatment (see
http://irlssg.org/augmentation/).
As far as finding an RLS specialist who can help you, try the RLS Foundation (www.rls.org)
or look on the various RLS forums where other RLS sufferers may help guide you
to one near you. With proper treatment, you have an excellent chance to get back
to normal with minimal if any RLS issues.
A Reply from Linda
THANK YOU so much for your quick response! I knew in my heart that I am suffering from augmentation and have been for quite awhile...but the Drs. made me question my own gut feeling and I (nor them) even used the word augmentation...but I had repeatedly told them that my RLS was 100% worse than when I started taking the Ropinirole. They nearly had me convinced it was just the progression of the disease...I am so glad that I found you and the RLS Foundation site! I will pursue this with my Primary care Dr. and try for a referral to someone who can help me get off this Ropinirole and find some peace!
Linda
Sent: Friday, March 04, 2016 12:55 PM
Subject: symptoms and treatments?
My name is Marcus and I’m 42. RLS has been with me since ’99 and has developed
in my arms now. I cannot take OTC sleep medication as they have a reverse affect
on me as well as cold medicines and cough syrups. This has been a debilitating
disease causing lack of sleep, frustration, anxiety (fear of my bed), and
trouble with work and my relationship. My signals last 3-5 seconds and the
frequency is between 20 and 25 seconds apart.
I have been prescribed muscle relaxers that don’t work. In your opinion, is there a problem with considering the possibility that a drug used as a sedative may surpass the level of consciousness that is active in sending the signals to my arms and legs giving me both a level of sleep the disease denies me and may decrease the signals by achieving a deep sleep. The drugs I’m listing are: Xanax, Seroquel, and even a 10mg valium. It may also help in mentioning, I cannot take OTC medicines for sleep as they work in reverse.
This “tickle reaction” to contract all the muscles in the affecting limbs should not in my opinion be considered a “muscle relaxer” treatment. It clearly originates as a neurological disorder and needs to be addressed accordingly. Please give me your opinion, and if the wordage is a bit harsh I apologize as you can guess I haven’t rested much in the last few weeks. I do value your opinion and would love to attend any sleep study as a test subject in helping end this.
Cheryl
Medical Reply
The issue with OTC sleeping pills and cold medications is
that they typically contain sedating antihistamines that are well known to
worsen RLS. Please check on our website for the RLS Medical Alert Card that
contains a list of these medications and alternative that are safe for RLS
patients.
Muscle relaxing medications do not help RLS. Sedatives only help if they put you
to sleep (since you can’t feel RLS, headaches or other discomforting sensations
while asleep). In fact, if you try to stay awake after taking a sedating drug,
RLS symptoms are typically worse.
There are lots of good treatments available for RLS so please see a doctor who
is fairly expert in this disorder. Some of the older medications (like Mirapex
and Requip) tend to make RLS better in the short run while worsening it in the
future. You can check on the RLS Foundation’s website (www.rls.org)
for doctors who specialize in RLS and have an excellent chance to treat you
correctly so that your RLS will not be an issue in the future. Sleep studies are
typically not helpful to diagnose or treat RLS.
Sent: Tuesday, March 08, 2016 6:51 AM
Subject: RLS and the flu
I have had all day RLS for over twenty years now. I am 40 now. It has always
been kept in check with 1mg of Klonopin once a day. I can go through my life
since I work standing up and, at night, when I am home, my body almost
subconsciously flexes my calves constantly when laying down or going to sleep.
I started getting a bad case of the flu on Wednesday and I am still home
recovering from it and out of work. My question is can the flu worsen symptoms
of my RLS or change it in some way or is the flu so severe that my RLS is
terrible right now while my body tries to heal the damage from the flu from the
past six days? Will my RLS go back to my pre-flu level?
Jaime P.
Medical Reply
Typically the flu should not worsen RLS unless it makes you
very sleepy (RLS is worse when sleepy/fatigued) or if it keeps you up at night.
If you are taking cold remedies for the flu (that contain sedating
antihistamines like Benadryl), they can worsen RLS also.
Either way, you should get back to pre-flu levels of RLS once you are better.
Sent: Wednesday, March 09, 2016 11:30 AM
Subject: RLS & opioids?
I am a 43 yr male and have suffered rather severally for almost 30 yrs. I was
able to control if for awhile with the use of Ambien. As I got older it became
less effective so I stopped taking and began a search for something new. Fast
forward to now and I can tell you I have literally tried everything! About two
years ago I started taking Mirapex and thought I had finally found the one.
About six months ago it started to work less effectively so my doc increased the
dose, it helped for a bit but then out of nowhere I started to feel the horrible
restlessness throughout my body.
The back of my neck, shoulders, and down my arms. It was a nightmare that has
severely affected my life.
I have had two serious back injuries and for the last two years I have managed
that pain rather well the 7.5 mg oxycodone. There have been days when I felt I
didn't need the pain meds so I didn't take any. On those days, I felt my full
body restlessness. I started to notice that when I take the pain meds my RLS
vanishes. So one night I took pain meds with Ambien and got the best night of
sleep I had had in years! I went to my doc with this thought, to see if maybe I
could get extra pain meds to now take care of the night and not break in to what
I needed to get through work. He suggested gabapentin, which I have tried before
and it didn't help.
He wondered if the pain meds were making it worse when I
actually believe I was getting augmentation from Mirapex! He the said try
Lyrica, and I did last night with big reluctance. 75 mg dose and I didn't sleep
a wink, due to severe RLS. I am scared of what I read about Lyrica at higher
doses. I need help and don't know what to do. I fully understand what oxycodone
is and feel it's a little unfair to hold back from people who truly benefit from
it. I even took a drug test for the original script and would do so again.
Zach S.
Indiana
Medical Reply
Opioids are reasonable for treating RLS when used in low
doses (up to 20-30 mg/day). We tend not to see tolerance or dependence in
patients without a history of drug abuse.
Since you have not done well with gabapentin and Lyrica (Horizant is another
choice), opioids are the next choice. As you have found out, they working
extremely well to control RLS symptoms.
Since you are suffering from augmentation, it may be reasonable to try to wean
off Mirapex and just use oxycodone by itself. After a week or 2, you will
probably need less oxycodone to control your symptoms.
However, since most doctors do not know much about the use of opioids for RLS,
you may have problems getting your local doctors to prescribe these drugs as
needed to control your RLS.
A Reply from Zach
Sent: Thursday, March 10, 2016 7:26 AM
Subject: Re: RLS & opioids
Until yesterday I have felt somewhat alone in this battle. It is very
encouraging to know that it really may be the Mirapex and that after a couple of
weeks possibly needing less of the other meds.
Zach S.
Sent: Friday, March 18, 2016 9:37 PM
Subject: Fentanyl and Restless Leg Syndrome
My 91-year old mother has had severe back problems for years and has been
prescribed and using Fentanyl patches throughout that time in varying strengths.
She had a stroke several years ago that affected her left side (left leg and
left arm/hand are somewhat immobilized) so she is now living in an assisted
living facility near me (I'm her daughter/guardian).
When she first began the Fentanyl patches, years ago, she was on the higher dose because of severe back pain. Over the years that dosage was decreased gradually so that up until recently she was at the 25 mcg/72 hour patch. She had told me that she felt good with no back pain and no Restless Leg Syndrome that had been a bit of a problem in the past. So, I suggested recently at her last yearly physical with her doctor, that might we try reducing the Fentanyl patch strength even further to 12.5 mcg/72 hour and if any problems arose, we could go back to the 25 mcg/72 hour patch as this was to be a 'trial run' on the lower dose? She takes so many medications that I thought reducing the strength of the Fentanyl patch might be a good thing.
Well, the new, lower dose 12.5 mcg/72 patch was applied and the next day she began to experience the Restless Leg Syndrome characteristics which disrupted her sleep that night and has continued into the daytime hours. Not only is it affecting her legs but she had the characteristic sensations in her arms, also. So, I called her doctor today and he prescribed a 30-day supply of Ropinirole (0.25 mg/one at bedtime) while she stays on the 12.5 mcg/72 hour Fentanyl patch. His nurse said he wanted to wait and see how this works for her.
However, as I am reading the letters and your answers on this website, I am wondering if I should ask that she go back to just the Fentanyl 25 mcg/72 hour patch as I see that Fentanyl can not only continue to be a great help for her back issues but also for this Restless Leg Syndrome. I just fear that the Ropinirole (over time) will begin to worsen the Restless Leg Syndrome (augmentation) and she'll be caught up in a vicious cycle.
Medications she presently takes are: Metoprolol,
Pravastatin, Amlodipine, Paroxetine, Levothyroxin, Dicyclomine, Potassium,
Pantoprazole, Furosamide, Clopidogrel, Nitrofurantoin, Ropinirole, and for her
macular degeneration, Lumigan and Timolol eye drops.
Barbara F.
Medical Reply
As you already know, opioids are extremely effective for
treating RLS. However, we always have extra concern when using opioids in senior
patients as it may decrease mental function, alertness and possibly even
predispose to falls.
Another issue is that RLS is typically worse in the evening so often we can get
by with lower doses of opioids targeted at the later parts of the day when
needed.
I agree that the ropinirole may eventually cause worsening of RLS symptoms
(called augmentation) but this can take months to often years which may be less
of an issue in your 91 year old mother.
An alternative therapy would be to add Horizant, Lyrica or gabapentin which are
often very effective when added to opioid therapy to help reduce the dose of
opioid needed to treat RLS.
Ferritin and iron levels should be monitored as if they are low, supplemental
iron may be quite helpful.
Sent: Tuesday, March 22, 2016 6:52 PM
Subject: Amazing response with Contrave (Naltrexone + Bupropion)
Last year I struggled for 5 months to get off Mirapex and was having a very
difficult time finding a replacement drug. You advised that I might need to go
on an opioid, but my neurologist was not wanting to go there. So I settled into
using 0.75 mg of Mirapex with 50 mg of Lorazepam and 300 mg of Gabapentin for 5
times a week and 1 mg of Mirapex and 300 m of Gabapentin for the other 2 nights.
I didn't like it because it was too close to my dose of 1 mg of Mirapex that
caused my sexual impulse control issue for 12 years. And I wasn't sleeping that
well and I still had augmentation during the daytime.
Then something totally unexpected happened. I was diagnosed with arthritis in
one knee in November and my internist put me on Contrave to loose weight. First
I noticed that my impulse control issue went way down; perhaps is gone. I was
thrilled and attributed that to the naltrexone, which addicts use to keep off
alcohol or drugs. And then I discovered that I didn't need to use as much
Mirapex. I started decreasing the dose and am now well treated on 0.5 mg of
Mirapex and 300 mg of gabapentin. I sleep well and have no augmentation during
the daytime. I even experimented with a dose of 0.25 mg of Mirapex and 300 mg of
Gabapentin and while I did not experience the RLS sensations in my lower legs
and arms, I didn't sleep that well; my mind was too alert. I even tried no
Mirapex one night and this time I experienced the RLS sensations.
I don't know why this has happened. Neither my neurologist, my
psychiatrist/neurologist, my therapist, my internist or my pharmacist can
explain why this happened. It is not the Bupropion alone because I was already
taking that antidepressant when I went on Contrave. So it has to be the
Naltrexone. Or perhaps there is an interaction between Bupropion and Naltrexone
that explains it.
Perhaps you can explain this. I think that this would be a very good avenue for
RLS research. First it could be good for patients like me that experience
impulse control issues on Mirapex. Second, it could be good for patients who are
augmenting on Mirapex. I urge you to look into this. It has been a godsend for
me and I hope that will work for others.
Richard B.
Haiku, Hawaii
Medical Reply
It is very hard to explain why the naltrexone is helping
your RLS since it is an opioid antagonist and thus does the exact opposite of
what opioids do to help RLS. We have some reports of Suboxone
(buprenorphine/naloxone) helping RLS patients and it has naloxone which is quite
similar to naltrexone. However, Suboxone also contain buprenorphine which has
partial opioid actions.
But even with Suboxone, several patients have noted no benefit for their RLS so
your improvement is quite difficult to explain.
Patients who have impulse control problems with Mirapex should not continue the
Mirapex (even if there is medication that will treat it) but rather go off the
medication (especially since there are many other reasons for not using dopamine
agonists such as augmentation) and use alternative medication to treat their
RLS.
A Reply from Richard
Sent: Wednesday, March 23, 2016 2:28 PM
Subject: Re: Amazing response with Contrave (Naltrexone + Bupropion)
I tried most alternative medicines and did not get acceptable results. And my
neurologist does not want to prescribe an opiate. So I see no choice but to keep
on with what I am doing. When I get to my target weight I will experiment with
naltrexone without the bupropion and with lower dosage of naltrexone. As long as
this keeps working as it now is, I am very content to keep on with the lower
dose of Mirapex, because I currently experience no impulse control issue and no
augmentation.
Richard B.
Sent: Saturday, March 26, 2016 2:20 PM
Subject: RLS & Tramadol?
I have had RLS for at least 15 years and am now 63. I noticed in the last two
years that my RLS is getting worse. Now I have RLS almost 24 hrs. a day. I have
been taking Tramadol 50 mg (2 pills) to help alleviate the symptoms but noticed
that it has not been working. One problem I have is that the doctors are so ill
informed on RLS. I have to fight with my doctor to get the medicine I need for
my condition. What can be done to educate the medical community to this life
changing disease? Any ideas would help.
I have tried gabapentin drugs but they don’t work for me. This is a real strange disease.
William T.
Medical Reply
Unfortunately, you are correct in that most physicians
(even specialists) do not know much about RLS and especially treating difficult
cases.
There are two possibilities as to why the tramadol is not helping your RLS.
The first is that after 15 years, your RLS might be getting worse. You need to
check serum ferritin levels and make sure that you are not taking any medication
that might worsen RLS.
The second is that you might be suffering from augmentation which is a worsening
of RLS that typically occurs due to taking dopamine drugs like Mirapex or
Requip. However, tramadol can also cause this problem and the treatment would
then be to get off the tramadol.
Since regular gabapentin did not help, then you might consider Horizant or
Lyrica. If those drugs don't help then you may need opioids such as oxycodone or
methadone.
Sent: Friday, April 01, 2016 10:38 PM
Subject: Rotigotine for RLS
You have very kindly helped me in the past. My neurologist has put me on Neupro
patches. I did think my urge to get up reduced but leg pain continued. I wanted
to believe the patch was working and rang the neurologist to ask her whether, if
it was, the leg pain should have reduced. She did not want me to go up to 2 mg
patches because of augmentation fears. She suggested I try Gabapentin to support
the Neupro. I am now on 900mg. She said if the Neupro did not work I should
wholly use Gabapentin titration get upwards.
My puzzle and question is what benefit should I get if the Neupro is working. Should it control or lessen pain. The 900mg Gabapentin wipes me out and I cannot keep my eyes open after 10 but I was awake at 4.30. I imagine more than 900 would make the somnolence worse. The neurologist says that if the Gabapentin either doesn't work or can't be tolerated then it is levodopa with all the augmentation possibilities. I do want to stick with Neupro if I can but I realize it is a bit pointless if it is not really doing anything.
Martin C.
Medical Reply
There are a few issues in your current treatment. Although
it is quite reasonable to strive for the lowest dose of Neupro to prevent
augmentation, it is also reasonable to go up to 3 mg/day if needed to control
RLS symptoms. However, you should not use Sinemet (levodopa) on a daily basis
since the risk of augmentation is incredibly high (over 90% will get
augmentation).
You may do better with a higher dose of Neupro and a lower dose of gabapentin
taken in the evening only so that daytime sedation does not become an issue.
If further treatment is necessary, opioids may be added for further relief (and
should be extremely successful and safe if monitored correctly).
A Reply from Martin
Sent: Wednesday, July 20, 2016 2:41 AM
Subject: Ongoing treatment
I saw my Neurologist who is a Professor of Movement Disorders yesterday. When I
saw him in August last year he alluded to the possibility that the RLS symptoms
I had were the result of stress accumulated over time. Yesterday he reaffirmed
this view. He said that my brain scan and MRI were clear. Also the fact that I
still had considerable pain despite 1800mg of Gabapentin and 200 mg of Tramadol
made him think that stress was the cause.
He suggested that whilst my body showed the symptoms of RLS the fact of the severe pain made him think that accumulated stress was the cause. He said that of 500 patients he had on his books none complained of severe pain! Is that your experience? He has arranged for me to have a nerve conduction test and EMG and I will see him again in 4 months. I find it interesting that Dr Susanne O’Sullivan who wrote “It’s all in the head” is at the same hospital.
If we extend the hypothesis that if it can’t be clinically proven then it must all be in the head then many (all?) of the RLS sufferers do not have RLS at all but have functional movement disorders caused by emotional disturbance. By coincidence last Thursday I had my worst night with RLS. My legs would not stop moving in bed and I could only stop the agitation by walking around. Most nights I sleep well aided by 1mg of clonazepam when I go to bed. I hope this slightly disjointed rambling makes sense!
Martin C.
Medical Reply
The difficulty is that RLS is a diagnosis that is
completely based upon the history (the patient’s description of what he or she
feels) and thus is completely subjective without objective findings to support
the diagnosis. This makes it difficult for many physicians to establish the
diagnosis. Your doctor is looking for “hard” evidence of a disease but for RLS,
none of your scheduled tests will be helpful in any way.
Certainly, emotional stress/anxiety can heighten RLS symptoms but anxiety cannot
cause RLS symptoms (just like anxiety may worsen back pain but does not cause
it). If the RLS were treated effectively, the stress/anxiety would not be an
issue. Furthermore, a lot of your anxiety may be stemming from untreated RLS!
Pain is a significant symptom in at least 20% of RLS patients (several studies
confirm this) and a majority of patients describe their RLS symptoms as painful.
Your doctor may have seen a lot of RLS patients but he may not be asking the
right questions. In addition, you are likely not absorbing the high doses of
gabapentin so the tramadol may not be able to provide relief for your severe RLS
symptoms.
Sent: Monday, April 04, 2016 7:20 PM
Subject: How do I know if I have restless leg syndrome?
I am 70 years old and have been treated by two different neurologists for
restless leg syndrome. My first Doctor started me on 100 mg of gabapentin 3
times a day. Eventually he increased the dosage to 5400 mg a day but I still did
not get relief. I switched to a second neurologist seeking a better solution. My
second doctor started me on .5 mg ropinerole but didn't help at all. I am now on
4 mg a day along with 2 tablets of carbidopa/levodopa and .5 mg of Clonazepam at
bedtime. My symptoms still have not improved, in fact, they are probably worse,
especially during the day. I am not convinced the diagnosis is even right.
My symptoms are very atypical for RLS. I have never had the urge to move my legs
or feet. I feel continuous movement inside my left foot. However the feelings
often move up my ankle and into the calf. It feels as if someone is pulling and
pushing my foot. Sometimes I experience sharp stabbing pains. I also have some
of the same feelings in my right foot, also constant. I experience these
sensations non-stop, day and night, whether I'm sitting, standing or lying down.
The only times they don't bother me is when I am walking or dancing.
Recently i have begun to experience pain in my left arm,
however it is not constant. I find it extremely difficult to concentrate when
reading, attending concerts, church services or just about anything. The
medicines do not make me drowsy so I have a difficult time getting to sleep at
night. When I finally get to sleep but then wake up to go to the bathroom I have
to start all over again. I am going crazy!
Without the urge to move my legs, is it possible that it is not RLS? What could
it be? I need help.
Yvonne L.
Medical Reply
It is typically very difficult to diagnose RLS without the
urge to move your legs when at rest. If there is a separate discomfort in your
legs caused by RLS (which usually would be in addition to the urge to move your
legs), then you would feel some urge to move your legs in order to relieve the
discomfort. The positive part of your symptoms that are similar to RLS is that
your symptoms occur at rest and seem to improve with movement.
Furthermore, over 90% of RLS patients get initial relief (for a few weeks or
months) with dopamine drugs like carbidopa/levodopa or ropinirole (especially at
a quite high dose of 4 mg).
The lack of response to gabapentin (even at a high dose) or clonazepam does not
add very much.
To give you further confirmation about whether you have RLS would require a face
to face consultation.
Date: March 28, 2016 at 11:50:18 PM PDT
Subject: Weight gain.
I developed RLS approximately 30 years ago. My doctor started me on clonazepam,
but after many years, it wasn't working well, and I was weaned off of it. Now,
at age 60, I am taking 1mg ropinirole and 600 mg gabapentin at bedtime, and .5mg
Ropinirole as needed during the evening. Unfortunately, since I've been on the
gabapentin, my weight has been steadily climbing, even though I have not changed
my diet or exercise routines.
Is there something else that would work as well on my
medium to severe RLS without causing weight gain?
Sandy W.
Medical Reply
Gabapentin is known to cause weight gain. Typically, the weight
gain is modest (5 pounds for most) but some patients can experience a
significant weight gain (for some reason, women more than men).
Increasing your ropinirole also increases the risk of augmentation (a worsening
of RLS from taking a dopamine drug like ropinirole) so that would not be a good
idea. The other medications in the gabapentin class (Lyrica, Horizant) also have
similar weight gain issues) so you would have to consider a different class of
medication. The next choice is to add an opioid. Typically, we try to start with
the least potent opioids like tramadol and change to higher potency ones (like
oxycodone or methadone) if needed.
Sent: Monday, April 25, 2016 1:12 PM
Subject: RLS & Parkinson's Disease (PD)
I'm a 75 year-old female and have been on Requip for 12 years for RLS. I have
been experiencing augmentation with the Requip for some time now, and am
currently taking 7mg a day to control the RLS (a very high dose for RLS from
what I've been told). To complicate matters, I was also recently diagnosed with
Parkinson's disease.
Last week, my neurologist prescribed Levodopa to take along with the Requip. I,
however, am nervous that this combination will make me become even more reliant
on medication than I already am. Do you suggest that I get off the Requip, under
supervision, and allow the Levodopa to take care of both the Parkinson's and the
RLS, or do you think I should taper down the Requip and take it in conjunction
with the Levodopa? And how about the Requip augmentation? Does it really matter
if I am experiencing augmentation when I already have Parkinson's, or am I
setting myself up for disaster down the line?
Elissar R.
Medical Reply
For RLS without PD, taking high doses of Requip (over 1-4
mg/day) and adding Sinemet (levodopa) would lead to augmentation very quickly.
However, this does not seem to be the case for most PD patients in that they can
take high doses of both Requip and Sinemet on a daily basis and do not get
issues with augmentation. Part of the reason may be that the doses of dopamine
drugs to treat PD are so high (and given around the clock) that they might mask
augmentation.
However, since you may need the dopamine drugs to treat your PD, you may have to
take additional medication (like Horizant) to help control your RLS if needed.
Sent: Tuesday, April 26, 2016 12:57 PM
Subject: Levodopa (Sinemet) for RLS?
I was wondering why levodopa isn't used to treat RLS.
Corey G.
Medical Reply
When taken on a daily basis, Sinemet causes augmentation (a worsening of RLS from taking a dopamine drug) in almost all the RLS patients who take it. However, this drug can be used intermittently (up to 3 times per week) very safely and effectively.
Sent: Wednesday, April 27, 2016 5:14 AM
Subject: Questions about treating my RLS
I am searching for the RLS medicine that is right for me. Over a period of time,
including augmentation with Requip and Mirapex, my doctor and I have tried
Requip, Neurontin, Lyrica, Mirapex, Norco (to get through augmentation),
Clonazepam, Serax, Tramadol, Horizant, and Codeine. Right now I am on Horizant
600 mg and Codeine 30 mg. About half of the time this works very well, and other
times I wake up with leg movements sometime in the night. My biggest problem is
the side effects of Horizant: dull thinking and memory, poor mental stamina, or
what I call "brain fog". I had the same problem with Neurontin and Lyrica.
Sedatives made me sleepy in the daytime. Norco at higher doses caused
wakefulness.
I really want to get off of Horizant because it is affecting my ability to
function well in the evening and daytime. Can you explain the "brain fog" that I
am experiencing?
Do opioids commonly cause wakefulness? My pharmacist said this has happened to
her as well. Do you think all the drugs in this family would have the same
effect, or is it worth trying different ones to see if they all cause
wakefulness?
What should I expect as a "normal" night of sleep? Is it possible to find a drug
that will get me through the night without the daytime side effects? Sometimes I
wake up, not because my legs woke me up, but just the awareness that my legs are
not restful. So it seems that my brain is "talking" to my legs, although the
drug is possibly keeping my legs at rest. This is just as bad as if my legs were
moving.
Jeanne W.
Medical Reply
Although most patients who have a sleep related side effect
from opioids complain of increased sleepiness/sedation, a significant percentage
of patients are similar to you and find that it causes insomnia. This will
likely be common for many of the opioids but most patients can find a few that
will not cause this problem. If your current codeine does not cause insomnia
(that may be at least one that will work for you), then you can increase the
dose to 60 mg as this drug is not as potent as the other opioids. If the codeine
is not sufficient, then there is a good chance that another opioid may not cause
insomnia while helping your RLS.
“Brain fog” or sedation is not too uncommon with Horizant and gabapentin/Lyrica
like drugs. You might consider going to the lower dose of 300 mg (don’t cut your
current slow release in half) and see if that works better.
You should sleep much better once your RLS is more fully controlled.
Sent: Friday, April 29, 2016 4:05 AM
Subject: RLS and low-normal ferritin level
I need your support. I'm a 50 year old female that's been suffering from RLS
since 1998 when I was pregnant with our first child. I've taken all of the
typical "line of first defense" medications and am now using Neupro patches.
They've been effective but my dosage over the last few years has increased from
1mg/24 hrs to 4mg/24 hrs.
My neurologist tested my iron level a few years ago (not ferritin just "regular"
iron level) and it was normal. In spite of the patches I still suffer from mild
to moderate symptoms around the time of my period which leads me to the
conclusion that my iron level is somehow involved. I asked my GP to test my
ferritin level at my recent check-up. The results state my ferritin level is at
46 which is in the normal range...for a non-RLS patient. I've seen on various
websites (including John's Hopkins) that taking 200mg/day of ferrous sulfate
along with vitamin C has been beneficial for many RLS patients, but want to make
sure that's still the case.
However I also take .15 mg of levothyroxine each day for
hypothyroidism. This medication is also to be taken on an empty stomach and
cannot be taken at the same time as an iron supplement. What do you suggest I do
in this case?
Sue T.
Medical Reply
There are several issues with your treatment.
As far as iron therapy, there is a possibility that taking iron orally may be
helpful. We typically recommend taking up to 65 mg of elemental iron (usually
325 mg of total iron compound) up the 3 times per day (on an empty stomach with
Vitamin C as you have mentioned). However, the lower the initial ferritin
(especially below 15-25), the better the chances that oral iron will be helpful.
Most people absorb less and less iron as the serum ferritin level increases (it
may go below 2% for serum ferritin levels of greater than 50-60). In those
cases, intravenous infusions of iron can be very helpful. You could take your
thyroid medication just before going to bed which should be long enough from
taking your iron tablets.
The worsening of your RLS corresponding to your menstrual cycle likely has more
to do with hormones than iron (there is little changes in iron levels/stores
with menstruation as level do not get better very quickly after dropping).
Your dose of Neupro is now outside the FDA approved range and the range that I
suggest (which is a maximum of 3 mg/day). Increasing the dose above 3 mg/day
causes a very increased risk of getting augmentation (which you may already be
experiencing).
You may need to see a real RLS specialist since you are not fully controlled on
the Neupro. There are a few options which include adding Horizant and trying to
decrease the Neupro (which may be very hard to do). You may also want to discuss
getting completely off the Neupro and changing to opioid therapy.
Sent: Saturday, April 30, 2016 10:07 AM
Subject: So frustrated with my doctor
I stumbled across your website awhile ago in search of answers to my leg and
foot pain and found it so informative. I actually am in southern California so
its potentially possible for me to attend a meeting. But I am so frustrated with
my consult with the Neurologist to have my symptoms diagnosed as RLS. He quickly
dismissed me and told me that I do not have RLS because I do not have problems
falling asleep, rather I fall asleep fine without leg pain and later wake up in
the middle of the night with leg pain. That combined with the fact I do not walk
around in the middle of the night was enough to claim I do not have RLS. Are
those 2 reasons alone enough to discount RLS? I already have had x-rays and an
MRI as well as a full blood draw to rule out all the other possibilities. I even
went to physical therapy for a month for stretching.
My main issues are waking up in the middle of the night for whatever reasons and then staying awake for 3 hours with my legs and feet throbbing. I also have recently started having daytime pain, mostly when at rest. I don't notice it as much when I am active. No amount of anti-inflammatory medications help with the pain (including prescription strength). I do have a small dose of tramadol prescribed and that does help. To be honest, the daytime pain is negatively effecting my life more than anything and is the reason I sought medical help.
I guess I am curious if you think it would be worth it for a 2nd opinion? I have Kaiser so it should be relatively easy to request a different specialist. I am just so frustrated that he so quickly dismissed the possibility. I am 38 years old and a female. Oh and my sister also experiences leg pain.
Lyssa M.
Medical Reply
Unfortunately, most neurologists do not know the fine
points of RLS diagnosis and treatment. There are no real RLS experts in the
Kaiser system that I know of (and that includes outside California). RLS does
occur most typically at bedtime and prevents patients from falling asleep but I
have many patients who experience RLS a few hours falling asleep at bedtime. It
is also common to have daytime symptoms but they must only occur when at rest
(and be relieved by movement such as walking) which seems to be what is
occurring with you.
However, to diagnose RLS, you must have an almost irresistible urge to move your
legs (or at least massage them) to get relief. Without this urge to move your
legs (and get at least some relief with the movement), RLS cannot be diagnosed.
If you don’t have the urge to move your legs with the pain/discomfort, then you
might have a neuropathy (also hard to diagnose).
Sent: Friday, May 13, 2016 9:18 AM
Subject: Quick question on Treatment information
First, I’d like to thank you for your website. I’ve been suffering with a severe
case of RLS which was diagnosed in 2003, and have gleaned a wealth of
information from your site.
I was on there today searching out alternatives to my current medication, which
is Norco. My doctor has referred me to a sleep specialist, and I suspect she
wants someone else to tell me that I can no longer continue taking Norco, since
the government is cracking down on opioid prescription-writing. I’m looking for
an alternative before I’m cut off.
I did note that your chart, APPROXIMATE EQUIANALGESIC ORAL DOSE, has Vicodin and
Norco listed at 30 mg. every 3-4 hours. Is this correct? Regular strength is 5
mg per tablet; that would be 6 pills!
Jayne M.
Canton, Michigan
Medical Reply
You are misunderstanding the purpose of the chart. The
chart just allows you to compare different types of opioids so that if you need
to change from one to another one, you can figure out equivalent doses.
The doses on the chart are clearly not recommended doses for treating RLS since
they are derived from doses needed to treat chronic pain problems. For RLS, we
always try to find the lowest dose that takes care of your RLS symptoms.
Furthermore, it is best not to use combination opioid products like Norco (as it
has Tylenol in it) that contain products that do not help RLS and may cause side
effects if taken long term without any benefit.
Sent: Friday, May 13, 2016 10:44 AM
Subject: RE: Quick question on Treatment information
Do you have a recommendation for an opioid product that is not a combination
product? I’ve tried a number of different treatments over the years, and this
seems to be the only one that quiets my legs.
Medical Marijuana is legal in Michigan. Is this an avenue I may want to pursue?
The information on your page on this was encouraging, but sketchy.
The things that have not worked for me are: Klonopin, Sinemet, Requip, &
Neurontin. I’ve also been prescribed Ambien and Lunesta, which did help me to
sleep but did not stop my leg movements, causing my husband many, many sleepless
nights. I’m not a candidate for Mirapex.
Jayne
Medical Reply
We typically use methadone or oxycodone. However, Dilaudid,
Opana, Nucynta, MS Contin, levorphanol work equally well in given patients. You
may find it very hard to get your physicians to prescribe these potent opioids
even at low doses especially with the recent CDC recommendations against
prescribing opioids (which do not apply to the majority of RLS patients who use
opioids at low dose).
Marijuana is helpful for bedtime RLS as it works very quickly but does not last
very long (a few hours at best). It must be inhaled (obviously not great for
your lungs) or taken in a liquid under your tongue as these preparations get in
quickly and result in high peak levels of the drug. Ingesting marijuana
(edibles) may make you high but rarely provides RLS relief.
Sent: Saturday, May 14, 2016 7:07 AM
Subject: Quercetin for an RLS patient?
I was prescribed some quercetin for allergy symptoms and I have tried it a few
times and I seem to get much worse RLS from this natural antihistamine in the
same way I get it from Benadryl and other OTC antihistamines. I am still
checking by taking it for a day and then not taking it for a few days but it
does seem to be the culprit. Have you ever heard of that? I looked online and
didn’t see anything like that
Kathy B.
Medical Reply
Quercetin belongs to a group of plant pigments called flavonoids that give many fruits, flowers, and vegetables their colors. It also has antihistamine properties but it does not block the histamine receptors as does Benadryl. Therefore, it is not clear why it would worsen your RLS. I have yet to hear of another RLS patient affected similarly by Quercetin.
Sent: Sunday, May 15, 2016 11:11 AM
Subject: Time to find an RLS treatment
I'm a 62 year old woman who has had RLS since I was a child, long before it had
a name. I've only taken Ropinirole a couple of times when I needed to endure
transatlantic flights. Recently I'm seeing more sleep disturbances than normal
and feel it is time to address my RLS. However, every time I read the side
effects, specifically augmentation, I get nervous about starting drug treatment.
What is your recommended starting point? I'm in California, so if you recommend
a cannabis tincture, what strain? I've read that is effective.
Kristen T.
Medical Reply
Actually, the name RLS predates your birth as the name was
established in 1945 by Dr. Karl Ekbom.
I do agree that you want to stay away from Requip (ropinirole) and Mirapex
(pramipexole) due to concerns with augmentation and other concerns. However,
Horizant (or even gabapentin or Lyrica) is a very good alternative approach.
It is not clear which tincture of cannabis is best for RLS but it must be
inhaled or taken under the tongue to provide relief.
Sent: Monday, May 16, 2016 5:41 PM
Subject: Question on Ropinirole Withdrawal
Due to all the side effects and no help from my doctor (who just kept telling me
to increase the dosage) I decided to quit taking the medication. I had been
taking 1 mg for a few years and then increased to 2 mg, in total I've been on
the drug for 5 years now. Before the drug my RLS was manageable without any
medication and I hope to get back to that again but I'm not sure if I'm still
withdrawing or if these are my baseline symptoms.
I've tried to see sleep specialists and none of them have any answers or knowledge of this really. Some even tell me there's no such thing as withdrawal from Ropinirole. I tapered down from 2 mg to 1 mg for 3 days, then .5 mg and then stopped completely on May 4. Since then (it's been about 12 days) I have not been able to sleep at all. My doctor finally gave me Tramadol (50mg) and that let's me sleep in 20 minute increments but I still can't get much rest. Even 2 of the Tramadol doesn't allow me to sleep any longer than for 20 minutes at a time before my legs wake me up. I got so desperate that I took 3 of the pills last night and finally got some sleep. Is this normal?
Am I still withdrawing? How do I know when my symptoms are getting better or if this is my new baseline? So far when I stopped taking Ropinirole the daytime symptoms were gone within a few days, but since then nothing else has changed or improved. I haven't been able to find much information on the withdrawal process and I'm getting desperate and hopeless that this will never end for me.
JA
Medical Reply
You are correct that very few doctors (even the specialists
who treat RLS) know very little about the augmentation (worsening of RLS from
taking a dopamine drug like ropinirole) problems, how to treat it and what
happens when you stop the dopamine agonist drug.
You have already noticed one of the first benefits of stopping ropinirole which
is the decrease/disappearance of earlier onset/daytime RLS symptoms. Most
typically, in 10-14 days, RLS symptoms tend to decrease back down to baseline
(before you started on ropinirole). It can take longer and of course, in the
past 5 years, other events can occur that may worsen your RLS (like decreased
iron levels, new drugs that worsen RLS, increased stress/anxiety, etc.). If your
evening symptoms are not much better by 3-4 week, they will likely not improve
much after then.
Tramadol is usually not sufficient to treat the marked worsening of RLS symptoms
(which typically prevents sleep) when withdrawing from dopamine drugs like
ropinirole. We typically prescribe opioids like oxycodone or methadone (most
non-RLS specialists will be quite unwilling to prescribe these drugs). Several
of us experts have created a guide for physicians on how to treat augmentation
which can be found below:
http://irlssg.org/augmentation/
Sent: Thursday, May 19, 2016 5:35 AM
Subject: RLS help
I have had RLS for the past 6-7 years but didn't know what it was until about 5
years ago. I have been on Requip, Sinemet, gabapentin, carbamazapine, and many
others meds with no success. My symptoms are very severe and begin about 4 to
6pm each day. I was on Mirapex with great success however I maxed out on my dose
and then had a very terrible side effect of compulsive gambling and uncontrolled
sexual urges. I almost lost my marriage and encountered legal troubles as well.
I never had a history of gambling and certainly no urges to be unfaithful prior
to this medication. And am devastated by its effects.
I was weaned off of Mirapex and am now on Neupro patches from my neurologist. I use a 6mg patch that was titrated as it did not work at lower doses. I am still struggling with symptoms and have a terrible skin irritation from the patch which sometimes comes off and my symptoms get worse. My wife and I are at our wits end. I need to sleep and work but the terrible creepy crawly feeling is unbearable and I get no sleep. I live in Colorado where medical and recreational marijuana is legal and am wondering if I should just try it. Also I have never tried Lyrica and am curious about its side effects and efficacy for RLS.
I long for the cessation of my symptoms I had with Mirapex
but cannot accept the consequences of taking it due to the side effects it
produced in me. Do you have any suggestions on where to turn next? I'm not
really comfortable with narcotics but would be open to Xanax or another related
medication( Klonopin didn't seem to help). Should I be taking a combo of drugs
as I have read many people in your blog do? I have always been on a solitary
medication regimen. I would be very grateful for any insight you could provide.
Rob W.
Denver, CO
Medical Reply
You do not say how high a dose of Mirapex that you were
taking, but I assume it was a relatively high dose since you currently need 6 mg
of Neupro (we normally do not exceed the maximum FDA approved dose for RLS of 3
mg). As such, it may be very difficult to get off any dopamine agonist including
Neupro.
Lyrica is a very reasonable drug but is typically not potent enough to treat the
marked worsening of RLS when you stop the Neupro (which may last 10-14 days and
you may not get any sleep). Lyrica may work better after 2 weeks but some
patients are left with a more intense level of RLS which may require opioid
therapy.
I understand your reluctance to take opioids but when prescribed properly, they
are extremely safe and effective even in the very long term. Most patients in
your situation can only get complete relief with the aid of opioids. To keep the
dose of opioids as low as possible, they can be combined with drugs like Lyrica.
Xanax and other benzodiazepine (like Klonopin) do not help RLS symptoms but
simply help patients get to sleep (as they would if you suffered from headaches
or back pain). They should only be added if insomnia persists despite adequate
treatment of RLS symptoms.
Sent: Tuesday, May 24, 2016 2:18 AM
Subject: Is this RLS or something else?
I am a 55 year old woman. I suffer from mild depression and Hashimoto's
thyroiditis. For the past 20 years I've been taking SSRIs on and off (Zoloft,
Prozac, and most recently generic Celexa -- only a small dose of 15 mg). Of
course I also take Synthroid, but lately my thyroid is going a little crazy and
I may possibly be swinging over to Graves disease. I've had to decrease my
Synthroid by half in the past 6 months due to very "hyper" TSH! I am very
sensitive to caffeine and stimulants, so I avoid them. I also cannot tolerate
narcotics.
Over the past 5 years I have noticed that I get uncomfortable sensations in my
lower legs late in the evening or when I'm lying in bed. Lately it has gotten
much worse. It is an uncontrollable urge to move my legs. I feel it mostly in my
calves, but sometimes I feel it in my entire body and need to wiggle around,
pulse my muscles, or gently rock myself back and forth to ease the discomfort.
It's as if there is a "build up of energy" that needs to be addressed. It's a
very weird sensation. I know for a fact that I do have some periodic leg
movements in my sleep (I have moderate sleep apnea and have used a CPAP for the
past 6 years).
Does this sound like Restless Leg Syndrome to you? I have not seen a
neurologist, but I'm thinking of seeking one out. Could either the Celexa or my
thyroid problem cause this? I have read that Neurontin is often prescribed, but
I really don't want to take any drug that may make my depression worse!
Also, could a deficiency or over-abundance of a vitamin or mineral cause this?
For example, my B-12 is very high (it was deficient and then I started taking a
B-12 supplement to correct it a few years ago).
Lynn in Northern California
Medical Reply
It does sound like you have RLS and most all the
antidepressant drugs like Celexa, Prozac and Zoloft all tend to significantly
worsen RLS.
Vitamins and minerals are not involved in RLS except for iron which is often low
and in which case, iron supplementation can be quite beneficial.
There are many treatments available and the Neurontin/gabapentin class of drugs
can cause depression but that occurs only in a small percentage of RLS patients.
Sent: Tuesday, May 24, 2016 12:30 PM
Subject: RLS symptoms worse after switching Mirapex to Requip?
I've had issues with RLS since I was a teenager, I'm 28 now, and my RLS is big
time worsened by my antidepressant citalopram 30mg. I get the disturbing "my
tendons are itchy, my muscles are hyper" sensations in my legs, arms, and my
back.
I was just switched from Mirapex 0.5mg (which worked amazing with the exception of severe nausea) to Requip 0.5mg to see if the nausea side effects would be better. I tried it for the first time last night and it felt like I skipped medication all together.. is it typical for Requip to worsen RLS symptoms? or should I be on a different dosage?
I have not slept since last night and the little sleep I
was able to get was from some relief I got from a hot bath.. I read on one of
the threads of this forum that Requip is less potent than Mirapex, does that
mean the dosage should have been adjusted by my doc accordingly?
Amanda D.
Medical Reply
You are correct in that Requip is much less potent than
Mirapex. Typically, Mirapex is 2-4 times more potent so you would need 2-4 times
the dose of Requip (1-2 mg) to equal your previous Mirapex dose. For nausea, you
can take the medication with food but then you will need to take it earlier as
taking it with food delays the onset of action by at least an hour.
There is really not need to change from Mirapex to Requip since they work quite
similarly (at equally potent doses) and the issue was not that the Mirapex was
not working but rather that the citalopram has worsened your RLS. I generally do
not suggest increasing the Mirapex dose any further (I actually prefer to keep
the Mirapex at a maximum of .25 mg due to the increased risk of augmentation
with higher doses) so it might be better to consider adding another medication
like Horizant.
Sent: Friday, May 27, 2016 5:06 PM
Subject: Advice requested for managing a 17 hour flight
I am currently taking one .25 Ropinirole tablet split in half at two hours and
one hour before bed. I had augmented on .625 and worked back to the .25 dose
about two years ago. I also take a 50mg Tramadol at bedtime and another upon my
first waking up in the night. Each time I wake up I read (while standing and
stretching) for 1/2 to 1 hour and rub my legs vigorously. This allows me to get
back to sleep.
If I sit too much in the evening I get symptoms. Every time I wake up naturally
in the night I have symptoms that require staying up but if awakened by an
alarm, phone call or loud thunder I don't have symptoms and can get back to
sleep. Before taking Ropinirole I would get about three or four hours sleep each
night with several long periods up pacing etc so I'm happy to get about seven
hours now.
I also take 60mg of codeine before a long drive or a movie. This keeps my
painful RLS symptoms away. My doctor prescribes 20 tablets every three months
and I don't take all of them during the three months.
In September and October I will be taking a 17 hour 15 minute flight from
Auckland to Dubai and return. I have a prescription for 7.5mg Zopiclone which I
only use on long flights which prior to this have been a maximum of 13 hours.
The Zopiclone seemed to work for about four hours.
Could you suggest a plan for taking the medications I have available for these
long flights? How often could I take the codeine, when should I take the
Ropinirole and should I take the Zopiclone or not?
Clare S.
Medical Reply
The best plan would be to take codeine or tramadol which
tend to last about 4-6 hours. You could take only one of the drugs or even
alternate if they work equally well (I suspect that it may take 2 tramadol
tablets to equal one codeine 60 mg tablet for similar control of RLS). If you
are traveling with some else, you could add the Zopiclone (you could get quite
sleepy so it would be wise to have someone with you).
You could also take some ropinirole which last about 6-8 hours and may let you
need less of the tramadol or codeine.
Sent: Saturday, June 04, 2016 2:19 PM
Subject: Gastric bypass and RLS
I am post surgical gastric bypass 6 years ago. About 4 months after my bypass I
developed RLS. Its in my arms and hands too. I have been to my doctor and to
endocrinology but I don't really get anywhere. Currently I take tramadol for
back pain which does help with the symptoms but I have malabsorption issues. I
have tried iron but upsets my stomach so bad.
My ferritin is currently 27. At this point I'm not sure if
I am even absorbing the tramadol to the best extent. Have you heard of this
after gastric bypass and any suggestions? My doctor doesn't seem to know what to
do with me.
Tami R.
MN
Medical Reply
You will find that not many doctors know a lot about RLS.
Low iron levels can trigger/worsen RLS symptoms and your gastric bypass may be
causing decreased iron absorption which leads to worsening RLS symptoms. Oral
iron may be helpful but in cases such as yours, we strongly consider intravenous
iron infusions which can dramatically increase the iron levels (we like to get
the ferritin above 200) and improve RLS symptoms.
There are several medications available that can make RLS much better. You need
to see a knowledgeable RLS doctor.
Sent: Monday, June 06, 2016 11:04 PM
Subject: Does Lyrica cause augmentation?
i have exacerbation of my RLS symptoms since six months ago after an abdominal
surgery. The Neurontin I have been taking is no longer effective now. I just
started Lyrica last week and like to know what is the right dosage for Lyrica
and how long it takes to be effective.
I am also very concerned about the augmentation it might
cause. I read somewhere that there is 1.7% rate of augmentation per 52 weeks. I
would appreciate if you can enlighten me as how to avoid the augmentation caused
by Lyrica. Do I have to take Lyrica holidays or start taking low dosage.
Chen H.
Medical Reply
There is no augmentation with Lyrica or Neurontin. The 1.7%
augmentation is due to natural worsening of RLS and would be similar to a
control group on no medication.
The correct dose of Lyrica is the lowest dose that relieves RLS symptoms. I
typically start patients on Lyrica at 50 or 75 mg (taken about 1-2 hours before
symptoms typically occur) and then increase that dose every 5-7 days until
symptoms are controlled or side effects limit any further increases. The maximum
dose is typically 300 mg although we sometimes go as high as 450 mg for a single
evening dose.
There is no need for drug holidays with Lyrica.
Sent: Tuesday, June 07, 2016 7:08 PM
Subject: Restless Leg Syndrome in pregnancy
I have suffered with Restless Leg Syndrome on and off since being a teenager, I
am now in my 40s. During my first pregnancy, 4 years ago, the Restless Leg
Syndrome became much worse and after having my baby, I was put on Ropinirole as
the Restless Leg Syndrome only continued to worsen. I have been taking 2 mg
nightly which has 90% of time been effective.
I have recently discovered that I am pregnant again and have been told I MUST stop taking the Ropinirole. My doctor has been great and is trying to find an alternative because as it stands, there doesn't seem to be one. I have read that withdrawal form Dopamine agonists can result in initial, severe increase in symptoms for a short period of time but do not know if this is true.
Unfortunately, without the Ropinirole, I am unable to sleep at all and am now facing the prospect of little to no sleep for the duration of the pregnancy. To top it all, I suffer from Myalgic Encephalopathy which means that my body doesn't recognize sleep as being refreshing and fulfilling at the best of times. I am sitting here at 2:30 in the morning typing this because I can not sleep and I am petrified that there is nothing I can do.
I have tried all kinds of natural remedies and none work -
I don't have pain with the Restless Leg Syndrome just the uncontrollable leg
thrusts. I am really struggling and becoming more and more desperate as I can
not continue like this for the remainder of the pregnancy.
Sarah VS.
UK
Medical Reply
There is help for pregnant RLS patients. You will have to
stop the ropinirole and you are correct that it will cause a marked worsening of
RLS for about 1-2 weeks (sometimes much longer).
The 2 drugs of choice are gabapentin and clonazepam. Opioids may be used if
necessary and they do treat the withdrawal from dopamine agonists like
ropinirole very well. However, you will have problems getting a prescription for
any opioids in the UK.
Sent: Thursday, June 09, 2016 10:22 AM
Subject: Help with RLS
I have been taking Klonopin for over a decade for RLS, and it works great for
me. However, my doctor has decided that I should not take Klonopin anymore
because it increases the risk of dementia and can cause increased falls in the
elderly (but I am only 46). I have been weaning myself off of the Klonopin for
several weeks now. I don't mind giving up the Klonopin, but they can't seem to
find ANYTHING to calm my RLS.
She gave me Clonidine, which made me feel like I'm in a haze all day and it also made me weak and dizzy--very dizzy. I almost fainted when I was at the optometrist two days ago, and I have lost my balance and fallen 3-4 times in the night when I get up to pee. Then she tells me that Clonidine affects low blood pressure--which I have--only she didn't bother to ask me about it, even though she take my blood pressure every time I go in!
Now she is giving me Trazodone, but it doesn't seem to be
prescribed for RLS? I take Lyrica for Fibromyalgia, Ropinirole for RLS (but it's
not effective enough to let me sleep), and 10 mg of Viibryd. I have already
tried every natural thing I can do (Calcium, Magnesium, Valerian Root, etc.) so
those things are out for me. Do you have ANY suggestions of what to take for a
desperate severely RLS person?
Judy P.
Medical Reply
Klonopin is not an RLS drug. Its benefit for RLS is through
its sedating effect (sleeping pill) which just helps RLS patients fall asleep
(and would be similar to helping someone with back pain, headache or other
unrelated discomforting problem fall asleep). Since it has a 40 hour half-life
(and thus sticks around for over a day), sedation (which you may not appreciate)
is very common so shorter sleeping medications would be much better if a
sleeping pill is really needed.
Clonidine is a blood pressure pill that does not help RLS (one or two very old
case reports of benefit in the literature but RLS experts do not use this drug).
You do not say what dose of ropinirole you are taking but the lack of effect may
be due to an insufficient dose. However, ropinirole often causes augmentation (a
worsening of RLS from taking that drug) that can make your RLS very severe.
Lyrica often is very helpful for RLS but may need to be taken at high doses
(like 300 mg and you do not indicate your current dose). Viibryd tends to make
RLS worse (there is an RLS Medical Alert card available on our website that you
can download with information on drugs to avoid and alternatives).
If these drugs fail, then opioids are the next step that usually helps most RLS
patient especially the severe ones. You may have to see an RLS expert (very good
idea anyway although not too many of us around) to get opioids and have them
prescribed properly.
Sent: Tuesday, June 14, 2016 11:09 PM
Subject: RLS genetic questions
Recently, in an attempt to research my ancestry, I submitted a DNA sample to
23andme. One of the reports from the sequencing stated that I received two
variants of marker rs3923809 on gene BTBD9 from both of my parents. According to
the report I am likely to have more than 10 night disturbances. This confirms my
experience.
Does this information provide neurologists any additional
information that can be used to diagnose the severity of RLS or for determining
treatment options? (FYI I've been on Tramadol and Horizant for a while now and
am quite satisfied with these meds).
My background is not in medicine or biology so lots of this does not make sense.
Nick A.
Medical Reply
The gene variant BTBD9 is one of the several genes that have been associated with RLS and PLMS. Having one of these genes simply puts you at higher genetic risk of having RLS/PLMS. Since you already have RLS, there is no relevant information from knowing you have this gene variant since you are already suffering from RLS due to this increased risk. Just as with genes associated with cancers such as breast cancer, not everyone with the gene variants get the disease. There is no correlation with the BTBD9 gene and the severity of RLS or its treatment.
Sent: Sunday, June 19, 2016 7:34 AM
Subject: Trazodone for insomnia?
For weeks know I have been taken tramadol & at night 1 trazodone prescribed by
my GP because I was not sleeping. Well these last few days, four to be précised
the usual dose has not worked for me, I take 50 mg tramadol and 50 mg of
trazodone at night. I have done this for weeks know, but like I have said
previously for some unknown reason this dose as stopped working. I have been
waking up in the middle of the night with severe RLS.
Friday night I took an extra tramadol but all this did was the following day I was like a zombie., I experimented on the Saturday night I took an extra trazodone, (my usual dose at night 50mg tramadol + 50 mg trazodone). On the Sunday afternoon I had to go back to bed. I was so tired & I slept all afternoon (I'm sure it was the trazodone).
Can you please explain what the cause of this may be (I have just weaned myself of dopamine drugs)?
Susan T.
Medical Reply
Trazodone is a very sedating drug (which is why it is used to help patients sleep even though the sedation is an unwanted side effect). However, it also has a very long duration of action so if you take more, it will most likely hang around the next day. You are likely becoming somewhat tolerant to the sedative effects at bedtime and if you wake up in the middle of night, the increased sedation may help worsen the RLS. I typically don’t like to prescribe trazodone due to these issues.
Sent: Tuesday, June 21, 2016 7:14 AM
Subject: Ongoing treatment
You have very kindly helped me a couple of times before. Having now been unable
to tolerate pramipexole, ropinirole and also the rotigotine patches I am now on
1800mg of gabapentin and 200mg of tramulief. I also take 1 mg of clonazepam.
These are not working very well as I still get sometimes awful and usually just
present general leg pain. When the urge to get up becomes overwhelming, oddly
about the same time each evening, 10 or 15 minutes on my exercise bike helps.
I find walking at the end of the day hard and also in the mornings. I am now getting myoclonic jerking (prolonged spasming unlike night twitches) as I try to sleep and now convulsions when I wake. My GP thinks the gabapentin is the cause and in a phone call she asked me to start reducing this at 300mg every three days. She hasn’t suggested an alternative. Is Targinact a worthwhile possibility? I can’t see much point in trying levodopa as I have mentioned before.
I have carefully read your “Clinical Management of RLS “
which in an ideal world should be required reading for General Practitioners and
am thinking I am suffering from refractory RLS. I am seeing my neurologist on
19th July but I would very much value your comments
Martin C.
Medical Reply
The first issue is that most people do not absorb
gabapentin very well. When individual doses exceed 300-600 mg, taking more
typically gets very little extra gabapentin into the body. Therefore, you may
think that you are on a high dose (as will your doctor) but you may have blood
levels of the drug only slightly higher than lower doses (and thus not much
greater of an effect). Lyrica is a much better choice and is well absorbed so
that the more you take the more gets into the body (therefore better treatment
of RLS symptoms with higher doses but also a greater chance of side effects).
Your jerks and convulsions may just be RLS/PLM not controlled with your current
medications. I doubt that decreasing the gabapentin will be helpful.
Tramulief (tramadol extended release) works well for RLS but I usually prefer
shorter acting forms of tramadol so that the dose can be adjusted more
accurately to the severity of symptoms at different times of the day. Targinet
(called Targin in the USA – oxycodone slow release with naloxone) has been
studied for RLS in Europe and demonstrated some success. It is more potent than
tramadol but just as with tramadol, I prefer the short acting version
(oxycodone) which can be adjusted more readily. However, it may be very hard to
get these potent opioids prescribed in the UK.
I also do not like the clonazepam with its 40 hour half-life. If sleeping pills
are needed (it does not treat RLS in any way), then a shorter acting one such as
zopiclone or alprazolam is generally preferred.
Sent: Wednesday, June 22, 2016 1:16 PM
Subject: Pramipexole withdrawal and sleep
I am withdrawing from pramipexole (.125 mg once daily) due to augmentation. My
doctor has me taking 300 mg of gabapentin to make the withdrawal bearable. I
can't take any more than that as it makes me unsteady and really doesn't help
with the RLS. I am Thanks on day 6 of withdrawal and have had very little sleep.
Can you recommend some way to to sleep?
Kathy C.
Medical Reply
Unfortunately, gabapentin is not completely up to the task
of treating withdrawal from pramipexole RLS symptoms. You could speak to your
doctor about increasing the dose of gabapentin up to 600 mg (or even 900 mg)
although the higher the dose, the less of the increased dose gets absorbed. That
might help reduce (but not even close to eliminate) the increased RLS symptoms
from withdrawal of pramipexole.
The good news is that the RLS should improve after 10-14 days at which time the
gabapentin may be sufficient to control your RLS symptoms. We often give opioids
(oxycodone for example) which markedly helps the transition off pramipexole.
You could also add sleeping pills such as Ambien for temporary relief of your
insomnia.
Sent: Wednesday, June 22, 2016 3:13 PM
Subject: Alternative to pramipexole
I hope you can offer me some advice. My 78 year old mother has been taking
pramipexole for restless leg which she has suffered from for a number of years
now and suffers terrible hallucinations side effects.
They are extremely vivid and almost nightly and now include
sleepwalking. I know she finds these frightening and disturbing but her doctor
has said any other medications are likely to have the same side effects. We live
in England and I have tried researching but find it all very confusing. The
medication does not even seem to help the restless legs that much. Can you of
any advice? I know she takes other medications for blood pressure I wonder if
these could be the problem? She has agreed to go back to the doctors but I don't
hold out a lot of faith and she does not like to make a fuss but this is
effecting her greatly.
Becky P.
Medical Reply
Unfortunately, pramipexole is known to cause
hallucinations. It is possible that her blood pressure medications may be
involved but the odds very strongly favor pramipexole as the culprit.
With time, pramipexole tends to worsen RLS (called augmentation) which is why
many experts (me included) no longer like to prescribe the drug nor consider it
one of the drugs of choice for treating RLS. However, stopping pramipexole is
quite difficult as it results in a marked increase in RLS symptoms for at least
10-14 days.
The problem with hallucinations may be somewhat dose related. A solution might
be to add gabapentin (start with 100 mg and increase slowly to 300 or 600 mg as
tolerated or necessary) while trying to reduce the dose of pramipexole.
Sometimes, even a small decrease in the dose may improve the situation with
those unwanted side effects. However, with any reduction of pramipexole there
will be an very likely increase in RLS symptoms which hopefully may be covered
by gabapentin.
Sent: Saturday, July 02, 2016 9:25 AM
Subject: Dairy!
I have found that if I stay away from dairy and all forms of artificial
sweeteners, my RLS is much better! Also Zantac, Alka Seltzer, Benadryl and just
so many drugs can cause my legs to go crazy! I have to research everything
before I take it!
I also have found that sleeping on my stomach with my feet sticking out at the
bottom of my mattress helps a lot!
Kathy L.
Medical Reply
Some other RLS patients have found similar experiences with regard to dairy and artificial sweeteners but most RLS sufferers do not have problems with these substances.
Sent: Tuesday, July 05, 2016 1:54 AM
Subject: Withdrawal from ropinirole
I am currently withdrawing from Ropinirole and thought I had been successful. I
took my last tablet a week ago - 0.5 milligram and since then have been taking 2
tramadol tablets on an evening. I didn't realize how helpful they had been until
I ran out last night.
How long before I notice a benefit from the withdrawal (last night it was worse
than ever - it starts late afternoon and doesn't stop. Last night it was even in
my arms. I couldn't lay down at all and have had no sleep).
Do I need to continue with the Tramadol and if so how long for? Will I ever
revert back to how it was before I started the Ropinirole? I started feeling
very positive about taking the steps to come off because of augmentation but now
feel more desperate than ever.
Pam W.
Medical Reply
The augmentation process causes an extreme worsening of RLS
for 10-14 days after stopping a dopamine agonist like ropinirole. Therefore, you
have stopped the tramadol a little early. Most patients will find a marked
improvement in their RLS after about 2 weeks off the ropinirole but you will
still need medication to treat your RLS even if it goes totally back to
pre-ropinirole levels (not everyone goes completely back to pre-ropinirole
levels).
You will either have to continue tramadol or consider other drugs like Horizant,
gabapentin or Lyrica.
A Reply from Pam
Sent: Wednesday, August 10, 2016 7:02 AM
Subject: Re: Withdrawal from ropinirole
I can now say I have successfully withdrawn from both the Ropinirole and the
Tramadol (that I used to help me come off the Ropinirole). I actually stayed on
the Tramadol for a month, perhaps too long, as withdrawing from that was equally
bad. Although I found 100mg of Tramadol at night very helpful I read that it
also causes augmentation and I don’t want to go through that again. So I am now
drug free and ready for my neurology appointment in the autumn.
However having spoken to a fellow sufferer on the RLS.UK website she has
informed me that the specialist in Sheffield Neurology Department is ignorant of
augmentation and current recommended treatment for this condition. She ended up
with a prescription suggested by yourself that she has found successful for
several years. So I would like to be prepared.
I have suffered from RLS all my life but it became much worse during and after
my menopause. I have it every day, usually just in my legs and am up every
night, often for hours at a time. I also suffer from insomnia. I do not get any
pain. I have no other medical conditions and am otherwise in good health and
active and average weight for my height and age.
Having suffered with augmentation on 1mg and then 2mg of Ropinirole I am not
sure which drug I should try next or am I better with a combination? Do you have
any advice? I have looked at all the ones you listed but don’t really know where
to start.
Pam W.
Medical Reply
My suggestions as to the next drugs to try would be Lyrica
(pregabalin) or gabapentin. Lyrica is much preferred as it has much better and
more predictable absorption (but could be more expensive). I typically start my
patients at 50 or 75 mg, 1-3 hours before bedtime and increase by my starting
dose every 5-7 days to a maximum of 300 mg. If necessary and if sedation does
not occur, an additional (typically smaller dose) may be added earlier in the
day.
You could still use tramadol when needed. This drug can cause augmentation but
likely less commonly than ropinirole. However, if you take the tramadol
intermittently (maximum of 3-4 days per week), augmentation can’t happen.
Sent: Friday, July 08, 2016 9:59 AM
Subject: RLS Question
I've had RLS for 18 years. Started with Klonopin, when to Mirapex. Currently on
Requip ER 4mg, Horizant 600mg, Temazepam 30mg.
I just switched to the Horizant from 2400mg of Gabapentin as my RLS symptoms
were getting worse. I feel like the Horizant is less helpful as I have more
night time awakenings.
Some of the online RLS groups are telling me that RLS experts say the current
max recommended does for RLS for Requip is 2mg, even for the ER version. IS this
true and is it documented somewhere online? Should I consider getting off
Requip? My Neurologist has said that if the switch to Horizant didn't work that
I could consider Codeine.
Paul M.
Medical Reply
The concerns with the dosing of Requip have to do with
other issues. The problem with dopamine agonists like Mirapex and Requip is that
they work very well initially then over time (months to years) worsen RLS in a
process called augmentation. Since you are already on Requip ER at 4 mg and not
doing well (despite the addition of other treatment (Horizant or gabapentin), it
is quite likely that you are already experiencing the augmentation issue. I
actually recommend going no higher than 1 mg of Requip (in the medical articles
and books that I have authored) as augmentation increases with the dose of the
dopamine drug (most regular specialists do not know this information).
Horizant is simply a better delivery system for gabapentin. However, Horizant at
600 mg only releases 300 mg of gabapentin so it would be difficult for it to
match the 2400 mg of gabapentin (even though most people do not absorb
gabapentin very well at higher doses, you are still taking a much higher dose).
Opioids are an option for treating RLS and augmentation problems from dopamine
agonist drugs. However, you could consider increasing the dose of Horizant (even
though it is only FDA approved for 600 mg per day) and combining it with an
opioid. Often, a higher level of RLS expertise is necessary to achieve near
complete RLS relief.
Sent: Thursday, July 14, 2016 3:12 PM
Subject: Crazy with RLS
A year and a half ago I was prescribed a generic Requip for my RLS. I never have
any pain in my legs but just a feeling that I needed to move, stretch or kick.
My RLS was not constant, occasionally I would have it when I was bored, taking a
long car ride or at night when I was tired. After a hospital stay for pneumonia
I was told I kicked the bed rails at night while sleeping. That's when I was
prescribed the Requip.
I loved it at first because I was finally getting a good nights sleep after suffering with insomnia for many years. I began waking up every morning with a bad headache so I started taking half a Requip pill. The problem now is I feel like the Requip may be causing my RLS to get worse. If I'm sitting And even think about having RLS, I start having it. That Ames me think a lot of my symptoms are psychological. I can't go to a movie, take a long car ride, during the day or sit and watch TV in the evening or sit and read a book, or sit and do anything, even games on my iPad.
The feeling that I need to move my legs is unbearable and makes me feel like I am going crazy, every night before bedtime I have unbearable episodes. I have tried taking the Requip earlier in the evening but it makes me extremely groggy and find myself walking around in a sleepwalking state and eating anything sweet I can find. After I take the Requip it takes awhile before I can relax and fall asleep, I dread evening and bedtime coming on because of my problems. I sometimes listen to relaxation tapes but it's hard to be still and relax when I feel my legs have to kick.
I tell myself every night not to take the Requip but I start feeling so restless I feel I have to take it. I still have trouble falling asleep it's as if my body is fighting sleep even when I am exhausted. I start kicking every time I doze off. Once I fall asleep I sleep very sound for 4 to 5 hours, wake up for an hour then fall back asleep for another hour or so. Every sleeping pill I've ever tried causes me to walk in my sleep and have had a couple of bad falls.
After all this I wanted to know if Requip could be causing my symptoms to worsen?
Beverly L.
Medical Reply
Requip (and other dopamine agonist drugs) often cause
augmentation which is a worsening of RLS from taking the medication (after an
initial period of improvement). Once you are on the drug, you become somewhat
dependent upon it as the RLS will get markedly worse when you cut down the dose
(as you have done) or even more so if you completely stop the drug.
The solution may be to stop the drug completely. You will experience about 10-14
days of marked worsening of your RLS but after that, your RLS have a very good
chance of reverting back to where they were prior to taking the Requip.
If you need treatment at that point, I would consider Horizant, gabapentin or
Lyrica (which do not cause your current problems with Requip).
A Reply from Beverly
Sent: Friday, July 15, 2016 9:41 AM
Subject: Re: Crazy with RLS
I do have Xanax, could I take that at night while stopping the Requip, because
the RLS, I'm afraid, will be unbearable if I don't take anything?
Beverly L.
Medical Reply
Any sedative medication will help somewhat. However, it would be like taking Xanax for a severe migraine, back pain or other sleep disruptive problem. The Xanax does not help the problem but it may help you sleep (if the symptoms are not so bothersome that no sedative may be helpful...which is quite possible). However, you should be careful not to take Xanax for the long term as one can easily develop dependence and tolerance.
Sent: Tuesday, July 19, 2016 3:18 AM
Subject: Augmentation
I have been taking Sinemet for over a year for Parkinson's disease and have
developed augmentation of restless leg syndrome. The augmentation pain has been
helped by taking gabapentin, but is gradually getting worse. I am slowly coming
off of Sinemet, but my Parkinson's symptoms are now getting worse.
Are there any Parkinson's medications that are unlikely to lead to augmentation
of restless leg syndrome?
Lain M.
Medical Reply
Only the dopamine related PD drugs (and tramadol) cause augmentation. The longer acting ones (such as Neupro, Mirapex ER and Requip XL) have less of a propensity to cause augmentation and may work quite well for your PD. There are also several non-dopamine drugs that can be prescribed for your PD.
Sent: Friday, July 22, 2016 8:37 PM
Subject: Is this RLS?
I'm confident I do have RLS but am wondering if some of my symptoms are actually
another condition. I sometimes get RLS in the evening as I lounge before bed and
the symptoms follow the classic definition of RLS. However, I'm unsure of the
symptoms I have as I drift off to sleep: my muscles randomly jump, pop, or
twitch anywhere from my feet to my head. And anywhere there's a joint I can get
involuntary movement from my toes, ankles, to my hips, shoulders, fingers,
wrists, and neck. And in the last few months I've now noticed involuntary facial
movements like my lip jerking to the side, or a side of my nose squishing up, or
my chin twitching, or both eyebrows arching. All the above are painless and
completely involuntary.
I will sometimes wake to these movements or notice them as I'm falling back to
sleep throughout the night. The movements take different directions like
sideways, forward, upward. The movements in my hips and shoulders do not produce
full movement of that limb, instead they are like forward moving spasms just in
that area.
For sleep medication, I've been using Medical Marijuana, vitamins and
supplements. I've not yet used traditionally prescribed medications. I usually
sleep 4-5 hours, wake, go right back to sleep, then have 2-3 hours of sleep
broken by the symptoms I described. Maybe 2-4 times a month I will use either
1mg Lunesta or .25mg Xanax and sleep 6 hours, but I am sparing with these two
drugs because of tolerance issues.
Do all my symptoms sound like RLS/PLMS, or do I also have another condition?
Amy
Medical Reply
It is difficult to say whether your jerking problems are
completely due to PLM or whether you have another problem. The PLM can occur at
rest and can manifest in the arms and legs. We typically do not see PLM in other
body parts but sometimes the jerks are aggressive enough that other body parts
may move.
You might also have hypnic jerks which occur when just entering sleep (stage 1
sleep which is so light sleep that if you wake up from a jerk, you are not sure
that you have even been sleeping).
However, I cannot say that some of the facial, lip, chin movements are not due
to another neurological problem and you might want to see a neurologist to check
them out.
Sent: Tuesday, July 26, 2016 1:30 AM
Subject: Anxiety & RLS?
You must get a lot of patients with anxiety and I was wondering how your
normally treat these patients or what you recommend? I read that Wellbutrin and
Trazodone are RLS friendly but are not supposed to be that great in the
treatment of anxiety? I also read that Nortriptyline/Amitriptyline not as bad as
SSRI/SNRI at exacerbating RLS but they are old fashioned and better in treating
depression? I have tried two SSRI and one SNRI and all three made my RLS a lot
worse.
I am already taking max dose of Pregabalin but still have some RLS breaking
through. Narcotics are not available for me. I know I am in a difficult
situation but i wanted your advice on how to tackle this?
My plan is to start Pramipexole or Ropinirole until RLS is well controlled and
then start a SNRI/SSRI. Then increase Pramipexole or Ropinirole when needed
bearing in mind my your recommended max dose to try and avoid augmentation.
Laura P.
Medical Reply
Trazodone is not a very good antidepressant or anxiety drug
but at higher doses (like 150 mg or more), some patients may get significant
benefit. Wellbutrin is fairly good for depression but may worsen anxiety.
Nortriptyline seems to be more RLS friendly but amitriptyline is not. They may
work for anxiety but your mileage may vary.
If you want to start a dopamine agonist, Neupro patch would be a much better
choice as it has less of a risk for causing augmentation.
Sent: Wednesday, July 27, 2016 10:43 AM
Subject: Hydrocodone-Ibuprofen 5-200
I have had RLS for 12 or 13 years. My symptoms occur day and night although they
are worse at night.
As of a few weeks ago, I am taking one .25 mg Mirapex at supper time, and a 5 mg
Hydrocodone "every 4 hours as needed". And this works better than anything I've
used for a long time.
The problem is that I need to take the Hydrocodone every 4 hour, without
exception. Otherwise the crawling in my legs gets bad. So I'm taking Hydrocodone
6 times per day. And I'm worried about the danger of doing this for an extended
period of time.
Ed M.
Medical Reply
The greater issue here is that you may be experiencing
augmentation (a worsening of RLS from taking a dopamine agonist drug) from your
Mirapex.
Even though you are on a low dose of Mirapex, this augmentation problem can
occur. Getting off the Mirapex may calm your RLS down (after 2 weeks of markedly
increased RLS symptoms).
The problem with hydrocodone is that it only lasts about 4-6 hours so must be
dosed frequently. The other issue is that it contains either acetaminophen or
ibuprofen which do not help RLS but may cause side effects in the long run
(kidney or liver).
In your case, I would suggest considering methadone (which does not contain
another drug) and lasts about 8-10 hours.
The addition of drugs like Horizant, gabapentin or Lyrica may reduce your need
for an opioid.
A Reply from Ed
Sent: Thursday, July 28, 2016 5:59 AM
Subject: Re: Hydrocodone-Ibuprofen 5-200
Before going on my current medication, I spent several weeks without any type of
dopamine agonist. After a very rough couple of weeks, my RLS symptoms did settle
down quite a bit. And since then the symptoms have stayed pretty much at the
same level. So my neurologist and sleep specialist were both assuming that there
was no current augmentation. I'll double-check with them about this.
Unfortunately, I have tried Horizant, gabapentin, and Lyrica. And none were at
all effective.
I doubt that either of my doctors would move me to methadone. If that is the
case, then besides the ibuprofen risk, my other concern would be long term use
of hydrocodone at 6 times per day. For example, possible dependence or addiction
and perhaps the need to keep increasing the dosage.
Ed M.
Medical Reply
It sounds like you did experience augmentation in the past
which puts you at higher risk of this happening again. I can't say that you do
have augmentation currently, but it is still a significant concern.
You may not have tried high enough doses of Lyrica and Horizant (I often give
more than the FDA approved dose of 600 mg per day).
Addiction is less likely with 30 mg of hydrocodone per day but still possible.
Lower doses of methadone would probably work better.
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Source: Southern California Restless Legs Support Group,
Patient Letters and Medical Answers Section, Page 114.
http://www.rlshelp.org/rlscomp114.htm
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