Sent: Monday, July 31, 2017 1:41 AM
Subject: Restless Legs Syndrome (RLS)
Before I retired I would get RLS once or twice a year. But after I retired I
started getting it every night. They started me on .125 mg of pramipexole which
worked like a charm but slowly I had to keep taking a higher and higher dose to
get relief. 7 years into retirement and I was at 1 mg and augmentation kicked
in.
I started getting symptoms earlier in the day and in my upper
body as well. I decided to try to wean myself off pramipexole so I could reset
back to the .125 mg level. I cut the Pramipexole dose in half and added in 2.5
mg of Oxycodone that I had acquired for other medical problems (no doctor would
prescribe Oxycodone for RLS). This has worked but I’m running out of Oxycodone.
My neurologist suggested taking Lyrica and weaning off Oxycodone first and then
off Pramipexole. It’s only been a few days, but I’ve been able to stop the
Oxycodone.
My question is how fast should I try to wean off Pramipexole and in what dose
decrements. I did try .25 mg Pramipexole and the RLS came back with a vengeance.
Also Lyrica is still under patent and very pricey. Is there another similar drug
I can try?
John S.
A Medical Reply
The issue that you will have that will make it difficult to wean
off the pramipexole is that once augmentation has occurred (a worsening of RLS
due to taking pramipexole over time), getting off of it will make the RLS many
times worse for about 10-14 days. Whether you taper slowly (by .125 mg) or more
quickly by .25 mg, once you try stopping the pramipexole completely, it will be
very difficult.
Lyrica does not work that well to help patients wean off pramipexole. Gabapentin
is somewhat similar (but does not get absorbed as well or as predictably) but is
cheaper (but still may not help that much).
Only opioids such as oxycodone work really well to transition off pramipexole.
However, you may need a low dose indefinitely and may have trouble getting it
prescribed for you.
Sent: Sunday, August 06, 2017 6:50 AM
Subject: RLS and dopamine agonists
Can Dopamine Agonists meds e.g. Mirapex and Ropinirole be taken on an "as needed
basis ",taking once symptoms have already occurred?
This is currently a topic of discussion on a support group. I
would say it needs to be taken on a daily basis as symptoms are more difficult
to stop once started and taking as needed would cause a rise and fall of
dopamine levels.
Kim W.
A Medical Reply
You are partially correct. Typically, it is so much easier (and
requires less medication) to prevent RLS symptoms rather than waiting to treat
active symptoms. That being said, for patients with intermittent RLS (who don’t
typically know when they are getting symptoms), short acting DA used to be on
the RLS treatment algorithm. In the more recent one (2013), we dropped short
acting DA from the algorithm for as needed use. However, I have patients who do
use it on an as needed basis and seem to do well (a small group of patients). I
also have patients who will take a DA before a long plane trip or car trip
(before symptoms start) and that seems to work quite well (with no concern of
augmentation due to the intermittent usage).
The other issue is that some patients need to slowly increase the dose until
they reach an effective dose (due to side effects) and then intermittent DA
therapy would not be appropriate.
Sent: Tuesday, August 08, 2017 5:31 AM
Subject: RLS and bariatric surgery
I'm a 42 year old women who's dealt wit RLS for over 10yrs. It also runs in
my family, my mom, nana, and sister all have dealt with it. At first I would
drink calm and it was fine. But over the past few years it's gotten worse. I
started Klonopin .5 then 1mg then 1.5mg. I didn't use it every day but only as
needed. I also tried Requip but that made it worse. Muscle relaxers make it
worse to (I've tried Flexeril and Tizanidineack).
Back in Nov I had gastric sleeve surgery (I was type 2 diabetic, high bp, high cholesterol). And my RLS went away for awhile. I've had my iron and magnesium checked and it's all good. But ever since my surgery I've had back problems. I have herniated disks from T1-10 with majority of the problems t5,6,7.
In March I started having shots in that area (11 totally) along with taking 100mg of Tramadol at night. 2weeks ago I stopped the Tramadol and then started taking an oral steroid for sciatica pain. This week has been the worst for my RLS. I've hardly slept. Taken many Epson salt baths, tried Ambien, worked for maybe an hour.
My problem is I can't take gabapentin it upsets my new stomach. I can't take any anti-inflammatory medicine or extended release medicine. What can you recommend? I need sleep. I can say my A1C is 5.5 so that's good but since I started the oral steroids my bp has gone from 118/73 to yesterday 139/106.
Could this make my RLS worse. And what do you recommend. I
haven't slept much over the past week. What kind of information can you give me
to pass along to my doctor. I did also just start exercising too. Any help will
be appreciated.
Jodi E.
A Medical Reply
You could discuss taking Lyrica with your doctor. It is similar
to gabapentin (acts on the same receptors) but is chemically different so it may
not upset your stomach. However, it can be expensive as it is a brand name (no
generic yet) and is not FDA approved for RLS.
Another choice would be to use tramadol on a regular basis as it does treat RLS
quite well and stopping it may have aggravated your RLS.
Also, check your ferritin levels (iron stores) as we like to have them well
above 75.
Sent: Sunday, August 06, 2017 1:56 PM
Subject: Urgent advice needed
I would like to ask for your help, if possible, to decide what medication is
best for me now that I have gone “cold turkey” off 12 mgs. of Extended Release
Ropinirole, which I have been on for over seven years. The website members on
Health Unlocked helped me to recognize that I had been experiencing extreme
augmentation for months due to this extremely high dose my neurologist had put
me on. In less than year, he increased my dosage from 2 mgs of regular
Ropinirole to 12 mgs, by going from 2 mgs, to 4 mgs, then 8 mgs, and finally 12,
whenever I saw him expressing a concerned about an increase in the frequency,
duration, and intensity of my RLS symptoms as they were also expanding from my
legs up through my entire body.
When he put me on the 12 mg dose, my episodes became completely unbearable,
occurring once and sometimes twice a day, lasting anywhere from 2 to 8 hours. Of
course, sleep was impossible. He never once mentioned the word augmentation,
something I knew nothing about, until I discovered the Health Unlocked website
when the 12 mg dosage led me to turn to the Internet for help. Instead, he
suggested that I was bringing these episodes on myself, because I was over
reacting to the severity of these episodes, thus trigger more episodes. That was
the last straw for me with this neurologist. I never went back.
I instinctively knew I had to get off this awful medication. When I began
researching RLS treatment options, I joined the RLS/WED society, and found my
way to the Health Unlocked website. In addition, I solicited the help of my GP,
who admitted that even though she didn't know much about RLS, she would be fully
supportive of my intention to get off this medication slowly, and agreed to
research it along with me so that we could determine what needed to take place
as I continued to titrate off Ropinirole. She ordered blood tests to check my
iron levels. They were low. I was not anemic, but my iron stores were definitely
under the acceptable limits. I began taking iron sulfate twice a day, but it
didn’t do a thing for me.
The health unlocked website members clued me into the advantages of using Iron
Bisglycinate. I had never heard of it nor had my GP. The first time I took the
28 mg Iron Bisglycinate capsule with orange juice as they instructed during an
augmentation episode, I felt complete relief in less that 15 minutes.
As of mid-June, I had titrated down to 2 mgs/day of regular Ropinirole since
January of this year. It all went quite well. I experienced almost no
augmentation or even RLS symptoms, until I got down to 4 mgs. a few months
later. At that point, I started experiencing full-body augmentation again, but
continued on. When I got down to 2 mgs. one website advisor suggested I switch
to 2 mgs of the regular Ropinirole as the augmentation on it is often less. I
did, and it was better. My symptoms were mostly confined to one leg or the
other, however sleep was still difficult. In addition, my quality of life was
affected, because I couldn’t sit in a chair or a car seat for more than 20
minutes without my legs going twitchy.
Rather than continue slowly titrating down at .5 mgs/month for he next few
months, I decided to go "cold turkey" as some of the website folks had done.
They warned me about the severity of withdrawal. Trusting their warning, I met
with my GP and told her of my decision to discontinue my Ropinirole altogether,
and asked if there was something she could give me to ease the withdrawal
symptoms. She gave me a script for Clonidine 0.01 mg once a day. I started the
process last Friday. It hasn't been too bad, although she did have to increase
my clonidine from one pill to two a day as the first three days were very
difficult. I got little sleep, but symptoms began to ease over the course of the
week. I was also taking 1200 mgs of Gabapentin/day and 200 mgs of tramadol,
which I had been on for several years due to a botched foot operation resulting
in painful nerve and arthritis damage in both feet and ankles.
Eight days later, I am now feeling much better, with only mild leg twitches
twice a day, always at 4 PM and 9 PM, the exact times of the day I tend to get
sleepy.
My concern now is as I come to the end of this "cold turkey" withdrawal, what
can I expect from my body and my RLS? My GP suggested that I may be able to
maintain control over my RLS with an increase in Gabapentin, perhaps to 2400
mgs, spread out to 4 doses of 600 mgs each throughout the day, and 100 mgs of
Tramadol twice a day, along with Iron Bisglycinate once a day. However, I’m
finding I do need the iron now twice a day. I am of course concerned about
taking too much iron. We will test it frequently to see if that should begin to
happen. MY GP thinks that twice a day for a while will be okay, but to use it
only PNR.
I am asking for you for advice and guidance Dr. Buchfuhrer to tell me as best
you can without seeing me (this is why I gave you so much detailed information
about my medication and experience) if you think that perhaps the Gabapentin,
tramadol, iron combination could possibly be a viable approach, now that I am
off the ropinirole and have no intention of ever getting on a dopamine agonist
again.
If this combination of medication doesn’t work, neither I nor my GP know what to
suggest as another course of treatment for me now. She thought perhaps Lyrica
might be good, especially since I have a lot of nerve and arthritis pain in my
feet and ankles, but I’m concerned about the negative side effects, such as
memory loss, dizziness, jelly legs, hair loss, and weight gain. I am over all, a
healthy and active 70-year old woman, who has had few health issues, other than
a recent surgery to remove an 8 cm. ovarian cyst along with my ovaries and
tubes. I recovered from that nicely, but found that the Percocet they gave me
following the surgery aggravated my RLS. So I am concerned that being on any
kind of opioid drug is not an option for me as an alternate treatment. I have
had no bad side effects on gabapentin or tramadol. I looked into gabapentin
enacarbil (Horizant), but the copay for me would be close to $500 a month. As a
retired person on a fixed income, that is out of the question.
Barbara G.
A Medical Reply
It is difficult to give you specific and detailed advice as that
is not the purpose of my website/email service. I try to answer simple questions
and guide patients in the right direction.
You are correct that you should not go back on any of the short acting dopamine
drugs (and likely not the long acting ones either).
Gabapentin is not well absorbed (in most people) in doses over 900 mg so
increasing the dose may not be helpful. That is not the case with Horizant or
Lyrica (this may also be expensive).
Even though Percocet seemed to worsen your RLS, this could have been partly due
to the surgery/post op period or you may still do better on a different opioid.
A Reply from Barbara
Sent: Tuesday, August 08, 2017 10:35 AM
Subject: Re: Urgent advice needed
Thank you for taking the time to respond to my email regarding options for my
what-do-I-do-now plea. Your answers were most helpful as were your Guidelines
for first-line treatment attachment, which I did pass on to my GP. However, I do
have a few follow up questions:
1. How long does Ropinirole withdrawal typically last, as I am still have some
severe withdrawal symptoms in my legs on day 10?
2. Your paper suggests that perhaps I should consider a transitional medication,
especially since Gabapentin is not well absorbed beyond 900 mgs. Yes, Horizant
does look like a very viable option for me, but the cost is out of the question.
Lyrica is affordable, and although I am cautious about the side effects, might
that be a good transitional medication to help me through these last few days of
withdrawal?
3. Might Lyrica then be a good next step medication to help me manage my RLS for
the long or longer term?
conditions.
4. What about Rotigotine as a transitional medication during this withdrawal?
Any light you can shed on this very dark time in my life would be so greatly
appreciated.
Barbara G.
A Medical Reply
It typically takes about 10-14 days for the RLS to calm down
considerably after stopping a dopamine drug like ropinirole. However, some
patients have experienced weeks or longer of worsening (a small percent
however).
Lyrica is typically better and more predictable for treating RLS. Its major side
effects include sedation, weight gain and edema (swelling of the legs).
Rotigotine (the Neupro patch) is a dopamine agonist and you would need a very
high dose to match the ropinirole dose that you were taking. Normally, I would
not consider using this drug at this time in your case. I sometimes add a small
dose (like Neupro 1 mg) later on if I need more help and have a limited choice
of other drugs to use (typically because the patient is intolerant or not
responsive to other treatments).
The problem with all the above is that it often takes considerable expertise to
manage all the options and choose the correct ones. Most doctors have little
experience and don’t know these drugs very well. Again, even though you had a
bad reaction to Percocet, opioids are typically the most effective (and very
safe when used correctly) treatment for RLS especially once augmentation has
occurred.
Sent: Tuesday, August 08, 2017 9:39 PM
Subject: RLS help
I'm a 58 y/o male living in Adelaide, South Australia - a long way from
California sorry. Very recently prescribed 0.25 mg/night pramipexole. My
question relates to whether or not I have Restless Legs Syndrome or Periodic Leg
Movement Disorder or a some kind of cross between them. My symptoms are
intermittent. When they occur it is almost always on retiring for bed & within
20 minutes I get a mild upper left quadrant ~ stomach or abdomen discomfort
which seems to trigger a nerve impulse usually down my right leg - however - it
can also just affect the left leg occasionally resulting in an involuntary leg
jerk twitch.
From reading the criteria for RLS - I'm a bit confused as to
whether or not my leg jerk/twitch is the same as the one described as an URGE to
voluntarily move my leg. It is a totally involuntary jerk. It is severe enough
to prevent sleep onset.
I've had investigations to rule out anything sinister in the GI tract Antacids -
proton pump inhibitors and simethicone have little to zero effect on the
abdominal discomfort or the jerk.
However - the confusing part is that for the 4 out of the last 6 nights that I had symptoms.. After the onset of symptoms - I took 1/2 tablet (0.125mg) pramipexole and it had rapid effect in ceasing the symptoms. I've had these intermittent symptoms for around 30 years with no real increase in frequency or severity.
I have recently completed a very slow 9 month taper off of intermittent prescribed benzodiazepine use. (last on clonazepam 4/mg/day). My thoughts are that the RLS? symptoms are somehow linked with the chronic intermittent benzo use.
Andy R.
A Medical Reply
You most likely do not have RLS but may have PLM. Those are involuntary leg jerks (sometimes even including the arms) that occur at rest and especially when in bed. Pramipexole works extremely well to ablate the PLM. However, with time, the pramipexole may worsen the PLM or even trigger the emergence of RLS.
Sent: Monday, August 14, 2017 3:44 PM
Subject: best relief ever
Severe RLS for 38 long years. I have tried more ways of feeling better than I
can fit on a page so will not bother with a list.
Last year I finally got an appointment at Johns Hopkins in Baltimore, MD. The
doctor ran me through a lot of tests.
In the end she told me to go either cold turkey or gradually off of Ropinirole
and not to resort to taking Mirapex because it works the same. She said at Johns
Hopkins they find they must do this for every person who has been taking them
who comes in before they can treat them. They also, NEVER prescribe these meds
because they always make the RLS worse over time.
I went through several weeks of withdrawal hell.
I started to just take 100 mg of Tramadol at 13:30 and another 100 mg Tramadol
at 19:30. Over the past several months I have had more sleep than I have had in
38 years and the RLS rarely bothers me during the day.
This, to me, is a miracle.
Also, I do not eat anything from the nightshade family of fruits and vegetables
nor do I eat apples, cherries, beets or any number of other items that contain
solanine. If I do, I pay the price.
I want to share my success. My life is new and I am forever grateful. There are
no words that can adequately explain the horrid mess I had prior to this.
Linda W.
Sent: Saturday, August 19, 2017 7:10 PM
Subject: RLS question
I'm a 60 YO female who just had a total hip replacement 30 days ago which I'm
recovering nicely from, and I had a cervical laminectomy 1.5 years ago on the
left side, however the spine surgeon at the time told me the MRI actually shows
more stenosis on the right side (although I'm asymptomatic on the right side). I
regret not having had the laminectomy done on both sides.
I also have 2 histories of sciatica (17 and 14 years ago), one
of which was treated with a lumbar injection. Lower back pain has been
manageable but my question is this: I have RLS, sometimes so severe that I need
to take hydrocodone to get any relief. I'm also on Requip and two other
antidepressants for depression/anxiety, and Levothyroxine for hypothyroidism.
I've heard that RLS can be (or is) caused by inflammation. Could this be the
case, that it's exacerbated by any one of my conditions of the spine? Should I
get a second MRI? I'm almost at the point where I can't live with this RLS,
Requip isn't helping and I don't know what to do next.
Heidi H.
A Medical Reply
RLS is not directly affected by inflammation in your spine or
anywhere else.
So, if you need an MRI, it should be for your back pain or sciatic symptoms, not
for RLS.
Your RLS may have just gotten worse after surgery as you may be more sedentary
after the surgery and that triggers more RLS. Also, any stress (like surgery)
tends to worsen RLS.
Your bigger and more important issue is that Requip tends to cause augmentation
(a worsening of RLS) that increases RLS symptoms and creates a need for higher
doses which will continue to worsen RLS. I have attached the RLS augmentation
article that several of us experts have recently published which explains this
issue in more detail.
In addition, most antidepressants worsen RLS so that may be adding to your
problem.
Sent: Sunday, August 20, 2017 6:22 AM
Subject: Requip side effect
I have RLS & my doctor prescribed Requip. Requip immediately stopped my RLS.
However, after taking this drug for about 6 weeks; I have swollen joints, fluid
retention & joint pain. My doctor told me to stop taking Requip immediately &
prescribed Lasix for fluid retention. I am still having all of the above
symptoms.
Does Requip have a long term effect with these complications?
Rita H.
A Medical Reply
Requip usually does not have long term side effects after being stopped. Your symptoms are quite unusual after stopping Requip so if they persist, further investigation would be needed.
Sent: Friday, August 25, 2017 12:41 AM
Subject: Ropinirole
I am a long time sufferer of RLS and would very much appreciate some advice. I
have been taking Codeine for some time with some success. However, I need
another medication to rotate with this because I regularly build up tolerance
and need to take a drug holiday in order to make it effective again.
I live in the UK where Ropinirole is the main drug used to treat this condition.
I don't want to take any medication every day and also I am aware of the
problems with augmentation with any dopamine agonist. Is it possible to take
Ropinirole three or four times a week or does it need to be taken daily?
Anne B.
A Medical Reply
Once you find the lowest effective dose of ropinirole, you could
rotate it with codeine. However, we normally do not see tolerance develop to
codeine. It may be that your RLS is a little worse simply requiring a little
more codeine to treat it. An additional drug to consider is tramadol. Although
it is classed with the opioids, it is quite different and may work better than
codeine.
Before trying ropinirole, I would suggest that you consider gabapentin and see
how that works for you. Lyrica is another choice that works more predictably as
it gets more predictably absorbed.
A Reply from Anne
Sent: Friday, August 25, 2017 1:59 PM
Subject: Re: Ropinirole
Are you saying that I could take Gabapentin 3 times a week? Or does it
need to be taken daily?
Anne B.
A Medical Reply
Gabapentin can be taken a few days a week but most patients take it daily as tolerance or dependence does not occur and if it helps, taking it daily is a reasonable thing to do.
A Reply from Anne
Sent: Saturday, August 26, 2017 2:37 AM
Subject: Re: Ropinirole
Thanks for that information. And can I assume that if my doctor will only
prescribe Ropinirole (which is what I suspect will happen) I could take that
several times a week too?
Anne B.
A Medical Reply
My advice would be to stay away from the dopamine related drugs
like ropinirole. You might find it very hard to stop once you start it.
Most doctors will readily prescribe gabapentin as it has been available for
decades, they are very familiar with it and it is very inexpensive. That is a
much better choice.
A Reply from Anne
Sent: Friday, September 1, 2017 1:41 AM
Subject: Re: Ropinirole
On the basis of your helpful advice, my doctor has prescribed gabapentin for me.
However she has no experience of using this for RLS and was not sure of the dose
I should take. Please could you give me some advice on this?
Anne B.
A Medical Reply
I usually recommend starting with 300 mg for patients 55 years
old or younger, 200 mg for those between 55 and 65 and 100 mg for those older
than 65. This dose can be increased every 3-7 days if needed to control symptoms
(and assuming no side effects such as significant next day sedation) only if
needed. Generally the maximum dose should not exceed 900-1200 mg.
The gabapentin is best taken 1-3 hours before bedtime or before the usual onset
of RLS symptoms.
If the gabapentin is not effective (it often does not get absorbed well),
pregabalin is another option.
Sent: Tuesday, September 05, 2017 7:15 AM
Subject: Diazepam for RLS
I have been taking Clonazepam 0.5 mg up to four a night for the last 20 years. I
did have a year's break when I tried lots of the other medications but came back
to Clonazepam as none seemed to work as well.
I asked my GP if I could try the equivalent does of Diazepam
instead to see if it works better than Clonazepam. I believe the equivalent does
is 20 mg of Diazepam to 0.5 mg of Clonazepam but my GP wanted to prescribe 2 mg,
but I persuaded him to prescribe 5 mg up to three times per night . Could you
advise on the correct dose please?
Lorraine R.
A Medical Reply
It is very difficult to equate clonazepam and diazepam doses as
this can vary widely from person to person.
Also, it is not clear why you would want to make this change since both drugs
are benzodiazepines and act on the same receptors. There is no benefit from
switching from one to another. In addition, both drugs have an extremely long
half-life and are not recommended for use as sleeping pills.
Your dose of clonazepam is already at the high end of recommended doses (likely
due to tolerance of the drug) and the dose of diazepam is above recommended
doses.
My suggestion is the same as previously and that is to wean off the
benzodiazepine drugs and discuss other therapies with your doctor.
A Reply from Lorraine
Sent: Thursday, September 7, 2017 1:35 AM
Subject: Re: Diazepam for RLS
Many thanks for your answer.
I read somewhere that people taking Clonazepam for RLS would probably do better
taking Diazepam as this is more effective for RLS! I do not use them as a
sleeping pill. I have already tried very many of the other drugs suggested for
RLS but none work for me (I get dyskenisia with the Parkinson drugs). I will
perhaps ask my GP to refer me to a neurologist, although no one in my area in UK
specializes in RLS.
Lorraine R.
A Medical Reply
I do not know where you read that diazepam is better for RLS as
I have never heard that before and I doubt it is correct (except for a few
anecdotal cases which can occur for any drug).
Again, the benzodiazepine drugs do not treat RLS symptoms but only help RLS
patients fall asleep like any sedative drug. They would thus treat headaches,
back pain, or any other discomfort similarly.
If the Parkinson’s drugs did not help your RLS (in addition to the other RLS
drugs not helping), I would suspect that RLS may not be the correct diagnosis.
Sent: Thursday, September 07, 2017 2:06 PM
Subject: Changed from Requip to Mirapex
I have changed from Requip to Mirapex taking .50 in the evening. I am delighted
to find out that my daytime and early evening symptoms seem to have gone. How
can this happen? I did not know Mirapex would accumulate in the body if that is
the reason.
Pippa P.
A Medical Reply
Mirapex has a longer half-life than Requip (8-12 hours compared to 6 hours) so it does last longer in your body. It therefore might help your early daytime symptoms but the evening symptom relief is more unusual. Taking the drug once a day should not cause it to accumulate (it is often taken every 8 hours for Parkinson's disease) unless you have an extremely slow metabolism for that drug.
A Reply from Pippa
Sent: Wednesday, September 27, 2017 5:54 AM
Subject: Instant relief
If I forget to take my Mirapex is there anything I can take when symptoms start
instead of standing for an hour? OxyContin ? I used to use quinine in the past
which worked well.
Pippa
A Medical Reply
Taking the Mirapex is probably the best thing to do. Some
patients might add a short acting oxycodone (OxyContin is slow release so will
take quite a while to provide relief) if they have it available.
Quinine might help leg cramps but has not benefit for RLS.
A Reply from Pippa
Sent: Friday, September 29, 2017 6:17 PM
Subject: Mirapex
I have been on Mirapex for 6 weeks having changed from Requip. It was working
great till now. My doctor says .05 which I am taking is the most I can take. What
can I do now?
Pippa
A Medical Reply
When Mirapex and Requip stop working, it is likely due to
augmentation...those dopamine drugs actually cause the RLS to worsen over time
after initially providing relief. Increasing the drug will provide relief for a
while but will fuel the augmentation process making your RLS worse with time.
We typically suggest that you get off the Mirapex and the augmentation should
calm down. This can be difficult and usually opioids are needed.
Attached is an article published last year by several of us RLS specialists
which can help guide you and your doctor. However, it often takes some expertise
to guide patients through this process.
Sent: Friday, September 08, 2017 3:50 AM
Subject: Knee surgery medications--2 questions
I'm age 70. My severe RLS (whole-body jerking due to augmentation) has been OK
on 30 mg methadone for 5 years. I'm to have arthroscopic knee surgery in 2
weeks.
1) The orthopod told me to "expect extra pain than most people," because he
doesn't prescribe a post-surgery opioid to people already taking one. (My
periodiontist said the same about upcoming gum surgery.) What is the reason for
this? I'm scared but resigned to the pain. I'm just curious, as I know arguing
would be futile.
2) Do some anesthetics interfere with methadone? I don't want to wake up
jerking! Should I warn the anesthetist not to give me some specific thing?
Sharon S.
A Medical Reply
The reason for the concern about adding opioids for post
operative pain control is that most patients on chronic opioid therapy
(especially high doses which is not usually the case for RLS patients) get
somewhat tolerant to these medications and then need much higher doses.
Therefore, many physicians are afraid to prescribe additional doses as the
patients might get into the more toxic ranges of opioid treatment. However, in
your case, the methadone dose (which is at the upper end of what most of us
experts prescribe for RLS) should cover most of your post operative pain. The
addition of Tylenol or ibuprofen usually takes care of the rest of the
additional pain.
Anesthetics do not interfere with methadone. However, you may not be able to
take oral medication for a while before and after your surgery so may not be
covered for your RLS symptoms. They can cover the methadone (until you can take
oral medications) with an injection of an opioid such as Demerol.
The more important issue is that anesthesiologists love to give medications that
may worsen RLS. Therefore, please give them a copy of the RLS Medical Alert Card
(which you can download from our website) as it lists all the drugs to avoid and
gives safe alternative choices.
Sent: Tuesday, September 12, 2017 9:33 PM
Subject: Compulsive behaviors
I have been on Mirapex for many years with a fairly good results for my severe
RLS ( arms and legs). I am on 1 mg. And unfortunately due to some severe
degrading compulsive behaviors that I have developed, that I have learned that
may ( many class action suits) be associated with Mirapex, I would like to try
Requip. What is the associative dose to 1 mg? Do you folks add the hydrocodone
with the Requip? Or just the Requip or just the pain meds? Should I consult a
neurologist instead of my general GP?
Barely hanging in there,
Sheryl C.
A Medical Reply
Mirapex at 1 mg is quite a high dose. If you have RLS in your
arms also, you are most likely suffering from augmentation (a worsening of RLS
from long term use of dopamine drugs like Mirapex and Requip). The augmentation
combined with the compulsive behaviors (which go away very quickly after
stopping the Mirapex) are 2 very good reasons to stop the drug.
Mirapex is about 2-8 times more potent than Requip so you would need quite a
high dose to replace the Mirapex. Furthermore, since it is also a dopamine drug,
you would most likely still have the compulsive behavior issues (and
augmentation).
Opioids are a good alternative but we do not use hydrocodone since it is always
attached to another drug (like acetaminophen) which does not help RLS (so only
adds risk without any possible benefit).
The best doctor to see would be a neurologist who is also a sleep specialist but
even so, most are not that expert on treating difficult RLS cases.
With proper care, you should be able to do very well in the near future (but it
may be hard to find that care).
A Reply from Sheryl
Sent: Wednesday, September 13, 2017 12:12 AM
Subject: Re: Compulsive behaviors
Sorry, in understanding your words Requip would have the same side effects as
Mirapex? If so, the only other choice are opioids? Frightening. Does not one
need increasing dosages of those for the same symptom relief? Oh my?!
Sheryl C.
A Medical Reply
You are correct that Requip does much the same as its cousin
dopamine drug, Mirapex so should not be substituted.
Sometimes lowering the dose will help decrease or even eliminate the compulsive
behavior. However, your RLS will still go crazy with the decrease so opioids
will be necessary. It is better just to get off the dopamine drugs and stay off
of them forever.
A Reply from Sheryl
Sent: Wednesday, September 13, 2017 7:38 PM
Subject: RE: Compulsive behaviors
The doctor just ordered me gabapentin … what do you think?
Will that be enough?
Sheryl C.
A Medical Reply
Unfortunately, when trying to get off Mirapex, gabapentin will
be like adding a drop to a bucket of water.
Gabapentin works great for patients who have never been on a dopamine drug but
is not potent enough to handle getting off Mirapex which will be very miserable
for you without taking opioids.
A Reply from Sheryl
Sent: Monday, September 18, 2017 8:54 PM
Subject: Re: Compulsive behaviors
Can I stop the Mirapex cold turkey??. I have been taking .5mg instead of 1 mg
for the last 3 or 4 nights ... (very hard sleeping, maybe getting 2-3 hrs / nt.
)
I picked up my prescription for gabapentin tonight for 300 mg.... after
questioning my doctor, can go to a max of 900mg . Do I slowly increase or after
not sleeping for three or four hours can I take another 300 mg dose?
Sheryl C.
A Medical Reply
Whether you stop more slowly (prolong the misery) or cold turkey
at this point will not make it easier. You will suffer for a shorter period of
time if you stop cold turkey but without opioids, you may not be able to
tolerate being off Mirapex. Whatever you do with the gabapentin, it will not
help you very much. I generally start with 300 mg to 600 mg and increase to a
maximum of 900 after a few days if there are no side effects (it will be very
difficult to determine this while you are suffering extreme RLS off the
Mirapex…much worse than what you are currently experiencing with likely no
sleep).
You might do better if you can last the 10 days off Mirapex but that is not even
guaranteed.
Sent: Tuesday, September 19, 2017 2:22 PM
Subject: meds with least side effects
I have recently been able to stop Mirapex. Day 12 now.
I have read that it takes 10 days to get to baseline. Can it take longer for
some people?
I assume I will need to use another medication. I am currently taking 5 mg of
oxycodone at night split into 2. This was to help me through the withdrawal.
I am extremely sensitive to medications and would like to be informed when
visiting with my neurologist as to the best med to try first. I would appreciate
any suggestions you may have. I know you can't give specific advice, I'm just
looking for an order to try with least risk of adverse side-effects.
Mara R.
A Medical Reply
Although 10 days is the average, it can sometimes take several
weeks or longer. The baseline may also have shifted upwards thanks to the
Mirapex.
We most often leave patients on a low dose of an opioid such as oxycodone as the
opioids, when used in low dose are actually very safe and effective even in the
long run.
A Reply from Mara
Sent: Wednesday, September 20, 2017 7:45 AM
Subject: Re: meds with least side effects
To clarify, what do you mean the baseline may have shifted upwards? Do you mean
that having taken Mirapex may have made my RLS worse?
Also, what do you consider a low dose of oxycodone for treatment of RLS? It is
very helpful to have your expertise for when I meet with my physician. Do you
recommend extended release oxycodone if symptoms are only during the nighttime?
Mara R.
A Medical Reply
Although the RLS may return to where it was before starting the
Mirapex, some patients never get back to that baseline but instead have a
permanent worsening of their RLS.
I consider 5-10 mg per day of oxycodone a low dose, 10-20 mg a medium dose and
over 20 mg a high dose. I don’t like to go over 30 mg per day but will sometimes
go as high as 40 mg per day.
Since oxycodone last for only 4-6 hours, some patients do need sustained release
oxycodone to get through the night without having to wake up and take more
medication.
A Reply from Mara
Sent: Friday, September 22, 2017 6:45 AM
Subject: Re: meds with least side effects
I have been taking 5 mg of oxycodone for 7 days and for the last two or so have
become somewhat anxious and unable to sleep at all. It helps with the RLS
symptoms, but I am wide awake. This happened when I tried hydrocodone when
withdrawing from Mirapex. Is this a side effect of all opioids? What would be
your suggestion as to what to consider at this point?
I apologize for my continued questions, but am unable to get any support from my
physician. Except for your input, I feel that I am on my own in trying to figure
out what to do. Your willingness to respond is so very important to those of us
struggling to find relief.
Mara R.
A Medical Reply
Most patients have sleepiness when they have a side effect from
the opioid drugs. However, a few get the opposite effect and have trouble
sleeping and can be anxious. It is difficult to know for sure whether your
reaction is due to withdrawing from Mirapex (which might explain why it also
happened with hydrocodone when you were withdrawing from Mirapex) but there is
no way to be sure (unless you were back on Mirapex and experienced the same
reaction with opioids (if you can remember having this reaction in the past with
opioids not related to getting off Mirapex, that would be helpful).
If it is due to opioids, it can be somewhat of a generalized reaction. However,
I often try several opioids and it is not unusual to find one that works without
that alerting side effect.
A Reply from Mara
Sent: Sunday, September 24, 2017 5:02 PM
Subject: Re: meds with least side effects
I have now been off of Mirapex for 17 nights.
I told my neurologist that I was not getting relief from the
hydrocodone or the oxycodone. (both at the lowest dose.) She suggested Benadryl,
melatonin or a sleep aid, all of which I have tried in the past. Clearly, she is
not aware that Benadryl is something known to exacerbate RLS. Melatonin cause
insomnia and stomach upset.
Do you have any recommendations as to what I could suggest to my physician? She
is the head of the neurology department in my state so it's not that she is not
qualified. Just does not seem to know what to do for me. I only have RLS
symptoms beginning in the evening through the night until early morning. I am
very fortunate in that regard.
Mara R.
A Medical Reply
Unfortunately, even most excellent neurologists do not know how
to treat difficult RLS patients.
The most effective opioid for treating RLS is methadone. You might need up to 10
or even 15 mg. However, we cannot be sure that you will not experience or worsen
your current issues with anxiety and insomnia (only trial and error can
determine that).
Adding Horizant or Lyrica in small doses may also help and enable a lower dose
of opioids.
A Reply from Mara
Sent: Wednesday, September 27, 2017 9:31 AM
Subject: Re: meds with least side effects
My doctor has previously prescribed gabapentin. I tried it when I was cutting my
.125 dose of Mirapex in 1/2 and it seemed to cause insomnia and then I tried to
take it during the first days of total withdrawal from Mirapex and it seemed to
make things worse, but it would have been hard to tell. So not a good controlled
experiment.
Would gabapentin in addition to an opioid have the same benefit as Horizant or
Lyrica and if so, at what dose of gabapentin? I would like to try it again
because the opioids make it hard to function during the day even at the low
dose. Or maybe it is because I'm just exhausted from still only getting a few
hours of broken sleep.
I am hoping that I am still going through withdrawal and that my RLS will get
better because my RLS symptoms are so much worse than they ever were before
taking Mirapex. Before taking Mirapex, which I started in 2007, I had taken
Luvox for postpartum depression for several years. I did not develop RLS until
several years later. Just wonder if there is a connection? I know I am getting
more depressed as the treatment "experiment" continues and that does concern me.
Life is not much fun right now. I am not sure what I should do about that other
than seeing a therapist which has been helpful in the past.
Mara R.
Your experiment with gabapentin may not apply at all since stopping Mirapex (as you already know) causes such an increase in RLS symptoms that most of your issues were likely due to withdrawal from Mirapex rather than side effects from gabapentin. The only issue with gabapentin is that absorption varies considerably and it is hard to determine whether it is getting in or not. Starting dose are between 100 mg to 300 mg and can be increased up to about 600 to 900 mg (higher doses likely do not get absorbed).
A Reply from Mara
Sent: Tuesday, November 28, 2017 2:47 PM
Subject: Lyrica vs. opioids
I have been prescribed Lyrica and have been taking 50 mg at night. It causes me
to feel "wired," it does not help my RLS symptoms, and the RLS symptoms are now
also in my upper torso which is new. My Doctor also prescribed hydrocodone to
help as I get used to Lyrica. The 10 mg of hydrocodone allows me to sleep. I
have read that Lyrica has many side effects and you can have withdrawal issues.
After coming off Mirapex, I am not inclined to get myself in a similar situation
in the future. I asked my Doctor if Lyrica is addictive and she said NO.
I know everyone is different, but in your experience, for long term use, which
has the least problems, Lyrica or opioids? I am concerned about increasing the
Lyrica to a level that helps with my RLS when 10 mg of hydrocodone allows me to
sleep. Do you believe the side effects I am experiencing from Lyrica, (worsening
of RLS symptoms and feeling agitated or wired) will go away? Bottom line, which
protocol will most likely have the least long term adverse effects. (I know that
is impossible to answer!!)
Mara
A Medical Reply
The most common side effect of Lyrica is sedation so your side
effect of feeling wired is the exact opposite of what we normally see. Lyrica at
50 mg is a very low dose so that the wired feeling may be due to increased RLS
symptoms due to lack of effectiveness of the low dose Lyrica. Therefore, higher
doses may work better to quell your RLS symptoms and even provide better sleep.
We usually go as high as 300 mg.
Lyrica is not addictive and most all the side effects occur in the short term
(like sedation, weight gain, etc.). It could take a few months (not years) to
develop depression (occurs in only a few percent of patients). Typically, if
patients do not have immediate side effects, Lyrica is a very safe drug for the
long term and at adequate doses, can be very effective. There should be no
withdrawal issues from Lyrica except for the return of RLS symptoms if alternate
therapy is not provided.
Opioids like hydrocodone are also very effective. They are typically very safe
in the long term at reasonable doses (except that you don’t want to use
combination opioids like hydrocodone which contain Tylenol which can cause liver
or kidney damage in the long term without providing any benefit for the RLS).
Several of us experts have an article coming out in January or February (Mayo
Clinic Proceedings) which discusses the appropriate use of opioids for treating
RLS.
In summary, both opioids and Lyrica may be very good in the long run for
treating RLS but there are lots of individual variations (as they say in the
commercials, “Your mileage may vary”). Only trial and error can determine which
is best for you.
Sent: Wednesday, September 20, 2017 4:38 AM
Subject: Horizant side effects?
I was prescribed Horizant 600 mg once daily at five p.m.I was pleased with the
results at first but now I am having some negative side effects. I am having
trouble with memory and concentration, noticed I have trouble decreasing, weight
gain and if possible developed cataracts in the last two months. I am aware this
sounds like it could be caused by other problems but I want to get off this
medicine and doctors I see in the United States.
Are unsure of how to withdraw from this. I tried just stopping and got little sleep and the restless leg syndrome symptoms got worse. I am sixty six years old, have emphysema, and am a widow. I tell you this in hopes it may help with your advice. I have been taking Horizant for eight months.
Cristina M.
A Medical Reply
The memory and concentration problems are quite common with
Horizant. However, cataracts are clearly not related to taking this drug.
Speak to your doctor about decreasing the Horizant dose to 300 mg (don't break
the 600 mg in half as it is a slow release tablet). That may work just fine and
not cause those side effects.
A Reply from Cristina
Sent: Thursday, September 21, 2017 3:47 AM
Subject: Re: Horizant
I forgot to mention hair loss. I have lost half of my hair thickness and am
concerned that even on 300 mg of Horizant the hair loss will continue too. I
realize that Horizant may be best drug for restless leg syndrome and again there
are trade offs but do you think that these side affects will lessen on lower
dose?
Cristina M.
A Medical Reply
Although hair loss can occur with almost any drug, I have not heard of any cases (in my experience) of hair loss with Horizant. If it is due to the Horizant, it may be better at a lower dose. However, if it persists and gets better off Horizant then a change to Lyrica (works on the same receptors) could be helpful.
Sent: Friday, September 29, 2017 7:25 AM
Subject: Severe RLS
I am writing to you from the UK because I am at my wit's end. I have been
enduring a major depressive episode since February 2016. In October of that year
I was put on Mirtazapine, following an abortive course of electro-convulsive
therapy: the drugs still in my system prevented a seizure, and I became too
traumatized to continue. At approximately the same time, I began to experience
an extremely unpleasant sensation in my foot on retiring to bed, as if it were
fizzing, or tingling, and which would only be stopped by standing up and walking
around. I did not seek a diagnosis at that time, but after Christmas, early in
2017, I went to my GP having done some research, and said I believed I was
experiencing RLS.
She prescribed Pramipexole, .08 mg, at night, to be increased to two tablets after two weeks. Initially I experienced a little relief, but soon this disappeared, and on returning to another GP in the practice, I was told to double the dose. Which I did, and then experienced a truly terrible increase in symptoms, to the point where my arms and hands as well as both legs were affected, I was only able to sleep for 2-3 hours at night, and my depression and anxiety became so excessive that I ended up on an Acute Psychiatric Care Ward for two months.
During that time, an appointment was made for me to see a neurologist at the adjoining hospital. She recommended I take a three month course of ferrous sulfate, be allowed one codeine tablet of 30 mg at night, and start taking amitriptyline. She also believed my anxiety contributed to the severity of the RLS and this should be addressed.
The amitriptyline immediately exacerbated my symptoms, and I was at the same time put on Lithium carbonate . I have taken myself off the amitriptyline, even though my psychiatrist wants to increase the dose. I know this is the wrong course to take. If I could, I would also take myself off the Lithium, but then I would be without any medication all. I am no longer receiving a prescription for anti-anxiety or sleeping medication, as these were deemed to be for short-term use only, whilst on the ward, due to 'addiction issues' with this type of medication - not with me personally.
My situation feels so bleak. My feet and hands are numb and
tingle constantly, day and night. I cannot sleep with my husband, as my
movements disturb him. I cannot bear a normal cover over my legs or feet, only a
sheet, and must lie with my legs elevated on a pillow with my feet resting on a
'cool-gel' mat, to try to ease the burning and heat. I hesitate to say this, but
I very often have thoughts of harming myself or even taking my life. I am aware
that most of my healthcare professionals believe it is 'all in my head' and are
frustrated when I reject medicines like promethazine and amitriptyline seemingly
willfully.
Tania B.
A Medical Reply
There are several issues contributing to your problems with RLS.
It is most likely that the Mirtazapine triggered your RLS symptoms. It is not
clear why the pramipexole did not continue to help your RLS but it is not
uncommon for it to actually worsen RLS with time (but it usually takes several
months or years for that to happen).
Amitriptyline and promethazine are very high on the list of drugs (you can
download our Medical Alert Card from our website or click the link to read the
drugs that worsen RLS) that markedly worsen RLS. However, there are only a few
antidepressant drugs that do not worsen RLS. Lithium may worsen RLS but it is
not as bad as the other drugs that you have been prescribed. If an
antidepressant drug is essential despite worsening your RLS, we often have to
just work around it.
Gabapentin or Lyrica is a better choice than pramipexole to treat your RLS. That
is, unless it worsens your depression (which can happen in a small percentage of
cases). Codeine is somewhat helpful but most patients need a more potent opioid
like oxycodone. If you can get your doctors to prescribe an opioid as potent as
oxycodone (in low dose), you may be able to achieve excellent relief from your
RLS.
Sent: Monday, October 02, 2017 7:38 AM
Subject: RLS and treatment with MEDICINAL CANNABIS based product
Calling again from .last 5 years. They were also used for PAIN management after
a major hip replacement that became infected with STAPH Bug. FOUR attempts were
made to get rid of the infection.(4 COMPLETE REPLACEMENTS IN 6WEEKS) Had to go
on a multi antibiotic treatment plan for 18 months. Spent 10 weeks in hospital
till the meds started to work.
PIC LINES and the best treatment BUT, Left with constant leg and hip plane. This is the reason starting OPIOIDS which gave me a better result with RLS. There are quite a few side effects with this treatment and I have heard that marijuana medicinal treatment may be a good change away from all the dopamine agonists. And other RLS. Meds. I have been using several recommended treatments and want a complete change from all the side effects.
Are you getting any results with the CANNABIS base products. I am 74 years old and would like a few better years to do the traveling and enjoy the rest of my life.
YOUR CARING advice to me in previous occasions has given me a most positive feeling. I have also received a copy of your MANUAL on RLS. I share it with my Doctors over here. Several comments were made with great surprise. I do hope we can make a difference to our suffers here. I have 3 of my children with RLS and several Grand kids (10) of them. They call me a bad genetic example to them.
Graeme H.
Western Australia
A Medical Reply
We do get some success with marijuana products however, they
typically must be inhaled. The relief occurs quickly but lasts only about 1-2
hours. It may be helpful for patients who have symptoms only at bedtime (and
typically, once they fall asleep, they do not do not have further RLS symptoms).
Therefore, it may only help part of your problem. In addition, inhaling
marijuana may be harmful to your lungs.
There are other treatments that may be helpful.
Sent: Thursday, October 12, 2017 6:02 AM
Subject: Mirapex/tramadol washout
I have been on Mirapex IR from 2010. In 2015 I switched to Mirapex CR after a
two week cold turkey washout period because of augmentation problems. One year
later I added tramadol IR 100 mg (for the night) because of augmentation.
However, augmentation reoccurred and at this time I am washing out both Mirapex
and tramadol cold turkey because I want to switch to the rotigotine patch.
I am currently taking 20 mg OxyContin for easing the withdrawal
effects and the RLS, but this seems far from sufficient (I have not slept at all
since). Should I increase OxyContin dosage and how much? or should I maybe keep
the tramadol in combination with OxyContin for the washout period?
Peter B.
A Medical Reply
I cannot give you any direct advice about doses of medications
since I have not seen you as a patient.
However, I can give you some general advice. It may not be a good idea to switch
to the Neupro patch (rotigotine) as you have already augmented on Mirapex CR and
you are just trading one long acting dopamine agonist for another and
augmentation would very likely occur.
You should discuss with your doctor changing to a combination of an
alpha-2-delta drug (Horizant, gabapentin or Lyrica) with an opioid (perhaps
methadone as it is a little better for most RLS patients).
Sent: Monday, October 16, 2017 5:15 AM
Subject: Methadone / Hydrocodone conversion
I am taking 5 mg of methadone at bedtime, and using a hot rice bag on my legs
for my RLS. I also have a monthly flare up of severe breast pain for 7 to 10
days from an injury (a blow to the chest three years ago). It throbs a lot at
night and keeps me from sleep. I remember that hydrocodone helped in the past
(probably the Tylenol in it), whereas at the present time, the methadone really
does not make any difference in my pain level.
Do you think I can smoothly substitute hydrocodone for methadone
a few days out of every month? Can you tell me what dose of hydrocodone converts
to 5 mg. of methadone? Would it be better to just use a lot of Tylenol along
with the methadone?
If you do not feel comfortable helping me, please recommend what kind of doctor
to go to. I can't find any doctor who will address this problem of breast pain
from trauma (my foot slipped off the shovel when I was digging in the garden,
and rammed my chest, hitting some breast tissue and ribs, probably caused nerve
damage, my uneducated guess).
J. W.
A Medical Reply
Typically, most patients would need 7.5 to 10 mg of hydrocodone
to replace 5 mg of methadone to manage RLS symptoms (but like anything else,
your mileage may vary). As long as you only use one of the opioids per evening,
there should not be a real issue with this regimen. The only problem may be your
doctor who may not like prescribing more than one opioid at a time (which for
most patients is a reasonable concern).
You could also try adding Tylenol, Advil or Aleve to the methadone and see if
you get comparable pain relief to the hydrocodone with Tylenol.
The type of doctors that you might want to consider to see for your breast pain
are general surgeons who do breast surgery or a pain management doctor.
Sent: Wednesday, October 18, 2017 3:30 AM
Subject: My Medication-Free Success with RLS
I am a 56-year old male weighing 250 pounds, and having struggled with RLS for
nearly 30-years. I had previously spent a lot of time on your Support Group
website looking for help, and wanted to share my success story in the hopes that
other members may benefit from it. Feel free to post this entry and modify for
clarity as you see fit. Please also feel free to email me back with questions
you may have.
Previously, I had been on Pramipexole, and Gabapentin, both of which were
ineffective at sufficiently controlling my RLS. As you may know, nearly each
night would result in losing 2-3 hours of sleep until I became exhausted enough
to nearly pass out and be able to sleep.
Often I'd resort to a large rubber mallet to thump up and down the back of my
calves, to help alleviate some of the discomfort. At times when I'd logged only
3-hours of sleep a few nights in a row, out of desperation I'd take a
Hydrocodone that had been squirreled away from a shoulder surgery. But
admittedly, there were times that taking a Hydrocodone didn't help either.
Over the years I started to exhibit symptoms in the afternoon and in the
mornings as well, and realized that an augmentation issue was forming and with
consultation from my new sleep specialist, I stopped the use of both medications
for a time. This made for a very difficult period, but after 2-weeks of being
off the two medications I picked back up at lower dosages. Again, this helped,
but not really that much.
Over the 30-years I'd average around 5-hours of sleep, with a bad night dipping
into the 3-4 hour range. A good night was typically 6-hours, and I'd only log
one 7-hour night of sleep per year. As a result I'd developed a great number of
health issues that have links to sleep deprivation such as obesity, obstructive
sleep apnea, diabetes, edema in my lower legs, memory issues, etc.
Last year I decided to try and get to the bottom of the RLS issue and started to
see numerous sleep specialists, and with subsequent referrals it seemed like I
saw a dozen or more specialists. With follow-up visits, it became difficult for
me to log my required hours working from home.
After having several tests related to the edema in my lower legs, I had a
consult with a Cardiologist. This doctor made a comment that I had a lot of
faith in pharmaceuticals, as evidenced by my 14 prescriptions that I was on at
the time. I told him that I couldn't say that I had a lot of faith, but would
certainly agree that I had a lot of need. Through the consult he had me try to
cut back on the number of medications I was taking, and then asked me about my
diet.
In that discussion, he asked that I stop drinking diet sodas and discontinue use
of any artificial sweeteners. Thinking that I'd just spent a year going from
specialist to specialist, I recalled the quote from Sherlock Holmes, as written
by Arthur Conan Doyle: "Once you eliminate the impossible, whatever remains, no
matter how improbable, must be the truth." And so I decided to give this request
a real try.
In eliminating all artificial sweeteners, I stopped drinking
soda's, and used honey in my hot tea. I'd check food ingredients, and would stay
away from any hints of artificial sweeteners. The results didn't come quickly,
but after two months of being artificial sweetener free, I noticed that my RLS
symptoms started to become less frequent; enough so that I discontinued the use
of Gabapentin. After three months I discontinued the use of the Pramipexole
as well, and I'd say that within 4-months I became totally symptom free from
RLS.
I know that everyone has different struggles with their RLS, but this is what
worked for me. Now when I turn in to go to sleep, it's lights-out within
2-minutes of my head hitting the pillow and I'm "out". Granted, I still have
issues with insomnia where I wake up after 3-hours feeling wide-awake, but I'm
trying to resist the lure of getting caught up on email. On average now, I'm
logging at near 7-hours of sleep a night, with an occasional stretch of 8-hours
about twice a month now. If I get 6-hours of sleep or less, now it's because I
stayed up watching TV and/or one of the dogs waking me up for a pee-break. But I
can say that for me, if I have a night of incomplete sleep, it certainly is not
from RLS.
This one simple omission of all artificial sweeteners from my diet has been
life-changing for me. Granted, I never would have believed it if I hadn't
experienced this first-hand, and so I'd urge others who are struggling with RLS
to give this approach a try.
Terry T.
Sent: Saturday, October 28, 2017 4:56 PM
Subject: RLS, Pramipexole and MSG
I am under Pramipexole (Mirapex), without it I feel beyond terrible, truly bad.
With a 1 mg tablet one hour before bedtime, and 0.25 mg at mid afternoon, I am
relatively OK, but I have learned to stay away from anything containing MSG (no
processed foods, no artificial or even natural colors, sodas, meats (grass fed
OK), no dairy too…).
Google: Sneaky names for MSG and stay away from it all, your RLS will diminish,
guaranteed.
I am mostly eating tuna (check the labels), salmon, shrimp, soups, fish,
avocado, salads, beans, … home cooked natural meals.
Rolando C.
Sent: Monday, October 30, 2017 2:34 AM
Subject: RLS help for an HIV patient.
I think that I am driving my doctor crazy. I don’t think that she has much
education/experience with restless leg syndrome. I am HIV positive and on
medications for that. I also have liver cirrhosis. So I must be careful of the
medicine I take and how it metabolizes. I have tried Lyrica, trazodone and
tramadol. None of these seem to be helping.
I have also done everything from soaking it in hot water, stretching, heating pads, exercise and I think just about every topical ointment that can be found. I understand that HIV positive people are 2 to 3 times more likely to get RLS then the general population. There does not seem to be any reports out regarding whether this could be medicine based or do you to the HIV infection. That being said, this onset of RLS came upon the changing of my HIV medications.
The doctor does not seem to want to give me the old medications that I was originally on. I will admit, that I borrowed medications from friends in order to see if they might work. The bupropion 300 mg extended release formula seemed to do the trick as it is a dopamine reuptake inhibitor. But upon checking that medication I found that it is metabolized through the liver and very hard on the liver so I do not believe this is a viable option for me as I have liver cirrhosis.
I have also tried oxycodone, this does allow me to sleep. Although, with all of the new rules and regulations regarding opioid, I am worried about the chances of being able to get a script for this. Does anybody have any options or resources where I can continue to deal with this. I go for days without any sleep and it’s very nerve-racking.
Glenn L.
A Medical Reply
There are a few options for therapy to discuss with your doctors
before resorting to opioids.
Horizant, gabapentin or Lyrica are often very helpful for RLS patients. These
medications are excreted through the kidneys so liver problems should not be an
issue.
An alternative would be the Neupro patch which does have liver metabolism but is
ok for patients with mild to moderate liver disease.
There is not really a known relationship between RLS and HIV as far as we know.
Sent: Friday, November 03, 2017 3:50 PM
Subject: RLS Medications
I have had RLS for as long as I can remember, but since I broke my back 12 years
ago it has gotten worse. I was put on 2ea 0.25 mg in the morning and 3ea 0.25mg
at night of Mirapex about 6 years ago. It worked great, I could sleep, work etc.
with no issues. Well it stopped working about 6 months ago. My doctor has put me
on Gabapentin which I took 100mg 3 times daily. I took it for 2 weeks and it did
nothing but turn me into a complete ass to my wife.
So I went back to my doctor and he put me on Ropinirole 3.5mg a day to be taken 1 to 2 hours before bed. Now he did start me out at a lower dose and I worked up to the 3.5 mg. the problem is that I thought it was working but realized that it is not doing anything. I am also on Oxycodone 30 mg for my back pain which helps with my RLS a lot. In fact the symptoms of RLS is gone for about 4 hours then it comes back until I take another Oxy.
Do you think I could go back on the Mirapex since I have been off of it for about 5 months? I know I probably went through augmentation with the Mirapex and hoping that it will work for me again. If so how should I start taking them again. I still have several pills left from when I stopped taking them, They are 0.5mg's.
Rodney
A Medical Reply
It is quite likely that you are experiencing augmentation, first
from Mirapex and now from Requip (ropinirole). There is not much difference
between the 2 medications except that Mirapex is much more potent (like over 4
times more potent than Requip).
We typically advise patients to get off the dopamine drugs (Mirapex/Requip) and
stay off them. If you restarted the Mirapex, you would quickly return to the
augmented RLS (but it is likely that you are still in it by taking Requip).
Getting off the dopamine drugs is difficult and needs significant expertise.
Your local doctors/specialists may not be expert enough to transition you off
the Requip.
A Reply from Rodney
Sent: Wednesday, December 06, 2017 3:12 PM
Subject: Re: RLS Medications
I decided to take myself off of everything by just stopping at once (Mirapex
and Ropinirole) I went through hell for about 2 weeks. I set an appointment up
with my doctor who is a sleep and RLS Doctor that I had to wait for a month and
a half to get in to see him. So I new my system was completely clean of Mirapex
and Ropinirole, my appointment was for today 12/6, he asked me how I was doing
with my C-PAP and I told him that I was not doing anything with it because I am
up walking the house all night because my legs will not allow me to lay in bed.
He began to tell me that I needed to start using my C-PAP because that could be
the cause of my RLS. Well after a long talk and argument that if you want me to
use the C-PAP then do something to stop my legs. He gave me a script for
Topiramate .25mg twice a day. Will I end up having AUGMENTATION with this
medication also or is it different from the others. He also talked to about
getting this Relaxis mat and sleeping with that, have you ever heard of this and
if so do you know if it works. It is suppose to be designed for RLS victims, any
feed back will be helpful.
Rodney
A Medical Reply
The Topamax (topiramate) is not a very good RLS drug. Since you
are off the dopamine drugs, I would suggest Horizant or Lyrica. They are much
better drugs for RLS and Horizant is actually FDA approved for RLS.
You are absolutely correct that CPAP therapy is of no benefit until your RLS
symptoms are controlled. However, once your RLS is calmed down enough to use
CPAP, this therapy will decrease RLS symptoms by making you less drowsy during
the daytime (and RLS symptoms increase with drowsiness).
The Relaxis pad can be quite helpful in many RLS patients (about 60% or so). It
is expensive but they do have a money back guarantee. I am actually the doctor
who did the research on the Relaxis vibration pad.
A Reply from Rodney
Sent: Wednesday, December 06, 2017 9:50 PM
Subject: Re: RLS Medications
Thank you for your fast reply, before I ask my doctor to write me a script for
Horizant can you tell me if it will be ok with OxyContin. I broke my back in an
accident about 13 years ago and I am on 30 mg 5 times a day. This also helps
with my RLS but only lasts about 3 hours before my legs start up again. And of
course I cannot just keep taking the Oxy every 2 to 3 hours. So is there any bad
side affects with taking Horizant with OxyContin. Oh and how long do I need to
take it before I start feeling the results of my RLS going away.
Thank You Again for all your help, I am not sure if anyone has told you this but
you are a miracle to all of us with RLS. You help so many people and I can just
imagine how many life’s you have saved by being here for all of us. I can
honestly say that there were times that I have thought of ending my life because
I just cannot keep going like this, I don’t but it does cross my mind and then I
come across your web page support group with all these people with the same
problem and here you are taking the time to help all of us. You Doctor are a
miracle worker and I thank you with all of my heart for helping me by just
answering my questions.
Rodney
A Medical Reply
We very often prescribe Horizant with opioids like oxycodone. The only concern is if patients get increased sleepiness with either drug alone, this may be additive and cause increased sedation. Otherwise, that is a very good combination for treating RLS.
Sent: Saturday, November 04, 2017 4:55 PM
Subject: RLS
As a child I would have to bounce my legs at night. As a young adult I started
having mild RLS. As I got older I would have periodic episodes, and found that
magnesium supplements helped with RLS and also any leg cramping. I am now 63. I
have been on various opioid medication for the past 15 years for severe
fibromyalgia (which I’ve had for 36 yrs) I also have Degenerative discs in my
low back with some sciatica. I decided to get off of all opioids, just did not
want to take them anymore.
About 4months ago, after titrating down (2.5 mg lower each month) off of methadone, and was down to about 7.5 mg per day , I started having nightly episodes of RLS.I continued titrating down 2.5 mgs per month. Now that I am completely off the methadone, I have RLS 24 hrs a day. I feel it in my arms hips and legs. It is torture. After doing research, I suspect that over the years, my RLS worsened, yet was being treated or symptoms resolved due to the methadone I was taking. I know people can get RLS from opioid withdrawal, but again, I titrated down so slowly, I figure that my RLS is “primary” not secondary. For now my Primary Doctor filled a prescription for Hydrocodone, as that is the only med that is giving me a break from the symptoms. I found that out because I had some around for “breakthrough” pain, but tried to never take it. For the RLS I tried Clonidine. And low dose of gabapentin (300 mg). Neither helped. So I took the hydrocodone, which does. I need to take a total of 20-30 mg. of hydrocodone in a 24 hr period to elevate the symptoms. They symptoms are extreme debilitating.
I will see a neurologist in 3 wks, in hopes of finding a non-opioid remedy. I worked hard to get off the methadone. It was not really helping my pain any more, and I feel it negatively affected my stomach and bowels. Is hydrocodone at 30 mg a day as “bad” as taking methadone, all things considered? I hear that for some with severe RLS, opioids can be the best option. Any advise would be appreciated, including which med you feel would be most likely to help My severe 24/7 RLS symptoms, other than opioids, and your thoughts on using hydrocodone if other meds don’t help.
Carolyn T.
A Medical Reply
The issue with using hydrocodone for RLS is that the hydrocodone contains acetaminophen (Tylenol) which does not help RLS so only provides a health risk (over time) without any benefit. I typically would suggest that the methadone (at equally effective doses) would be better.
If you see a neurologist, he or she will probably suggest Mirapex or Requip (dopamine agonists) which may help you get off the opioids and will work very well initially. However, over time, the vast majority of patients taking these drugs develop augmentation (worsening of your RLS) that will require stopping the drug and transitioning back onto an opioid.
It is possible that higher doses of gabapentin (or better yet, Horizant or Lyrica) may enable you to get off opioids or at least, decrease the dose of the opioids.
A Reply from Carolyn
Sent: Monday, November 06, 2017 8:51 PM
Subject: RLS
Right now, about 25 mgs of hydrocodone a day is working for me. I have
10mg/375mg (Tylenol) pills. I break them in half, and take 1/2 pill at 6:00am,
9:30am, 4:30pm, 8:00pm and 11:00pm. This is subduing the symptoms..still feel it
a bit, but can handle it, and can sleep.
I wonder if you can give me an idea of how much methadone I would need to replace that? My concerns about methadone are:
1.) Repressed breathing at night. I have obstructive sleep
apnea, and at least while on methadone, I also have central sleep apnea. I do
have a b-pap machine, but struggle with it’s use, as the air blows so hard that
I have to strap the mask on so tight that I wake up with severe headaches. (my
sleep Doc says it is at it’s lowest effective setting).
2.) I’m concerned about the potential heart concerns with methadone that require
frequent EKG’s to screen for concerns. Possible both concerns are not as great
with lower doses?
3.) additional question. Know anything about the link of systemic inflammation
and RLS.? I’ve seen some research on the possibility of a connection. It’s said
that once a person changes to an optimum diet, avoiding food sensitivities,
sugar, etc., an attends to stress reduction and sleep needs, inflammation
decreases and so does the RLS. Mmmm?
Carolyn
A Medical Reply Carolyn
Methadone is more potent than hydrocodone (and how much can vary
considerably) but methadone 5 mg, 3 times daily would likely take care of your
RLS symptoms. You should then go up or down on any of the doses by 1/2 tablets
to fine tune your dose. Most patients need less treatment early in the day when
RLS symptoms are least active and patients are more active so you may try to
take lower doses earlier in the day and higher doses (if needed) before bedtime
so that you get a good night's sleep.
Methadone can worsen central sleep apnea. Most of the new CPAP devices will
record central sleep apnea events so you can easily check to see if the
methadone has worsened this problem (most of the time, this is not a clinically
significant issue). However, if you are not using your sleep apnea device, you
may need a repeat study to see if central sleep apnea is a concern.
An initial EKG is necessary but if there are no issues with a prolonged QT
interval, then EKGs may only be necessary once every several years.
Inflammation and RLS is currently just one of many interesting theories on what
causes or worsens RLS. Of the concerns you mentioned, the only ones that are
currently known to be relevant are stress (any stress will worsen conditions
like RLS or back pain) and poor sleep (sleepiness worsens RLS).
Sent: Monday, November 06, 2017 2:19 AM
Subject: RLS question Netherlands
I'm from the Netherlands..... too far away to be able to visit you in person.
Despite this I'll hope so much you can and will reply on my email. I've got RLS
and PLMD, since I was 19. I'm now 42. Three years ago they found out through a
sleep study I have severe PLMD, but also mild apnea, for which I use a sleep
apnea machine now. HAY is well under control. But I was so disappointed: I still
feel sleepy....and tired. But mostly sleepy.
I've had Neupro, Pregabalin, Pramipexole which all gave me augmentation.
Pramipexole helped well, but augmentation followed rather quickly unfortunately.
I jerk my legs sometimes from the end of the morning and obviously I do at
night, also when I'm sleeping. I feel I only have light sleep. I'm not
refreshed. The last three years I used Clonazepam in combination with Tramadol.
Clonazepam till max of 0.5 mg and Tramadol till max 100 mg (and tried different
mg's of both), but Tramadol really made me spaced out and I think it causes a
little bit breathing deprivation in my case.
I bought a night vision camera, because often I was still so dull and sleepy in the morning. I was jerking a great deal of the night...... I have made a film, if you would like to see it. Also jerk with my arm since a year of three. Have that on film too. It was not a nice surprise to see me do that in the night and then also have to cope with the side effects of too little good quality sleep and the side effects of the medication.
MS
A Medical Reply
The issue is that your daytime sleepiness likely has nothing to
do with the PLM. Most RLS patients have PLM and unless the PLM prevent you from
getting back to sleep, they are probably not affecting the quality of your
sleep. It may seem logical that all those jerking movements (you don’t really
need to video them as they are so common in RLS patients) are disturbing your
sleep but actually the current research has so far shown that the limb jerking
only disturbs your bed partner’s sleep.
The clonazepam has a half-life of over 40 hours so it may be causing some
daytime sleepiness (if you need a sleeping pill, shorter acting ones are much
better and appropriate). It may still not be clear what is causing your daytime
feelings of being un-refreshed but it may be helpful to look for other causes.
Sent: Wednesday, November 08, 2017 1:31 PM
Subject: RLS
My 87 year old mother has had Primary RLS from the age of 20. She has never had
any medications for it
Unfortunately she now has dementia and is having frightening hallucinations.
Consultant wants to try her on a tiny dose of an anti psychotic med. I know they
can worsen RLS.
My question is do you know if there is any anti psychotic med which may not
cause an increase in RLS or if any one is "safer " than another.
Kim W.
A Medical Reply
The antipsychotic with the least chance (but still worsens RLS in some patients) is Abilify (aripiprazole).
Sent: Thursday, November 09, 2017 11:34 AM
Subject: RLS
I am 74 years old. I have been suffering with RLS for about 40 years. My initial
treatment was Sinemet which worked great until augmentation set in. I then
switched to PERMAX with the same effect. I then switched to Mirapex which worked
very well followed by Requip which also worked well. Switched back to Mirapex
and finally back to Requip. I am currently taking 4.5 MG of Requip (1.5 mg at
dinner and 3 mg at bedtime).
This worked well for years but is starting to lose its effectiveness. The 1.5mg at dinner time seems to still help allowing me to go to restaurants and movies but the 3 mgs at bedtime does not help anymore. My doctor told me to try Gabapentin (600MGs) which I take at bedtime with the 3mgs of Requip.. This does not seem to help.
Last night I was up all night with RLS. I have started taking marijuana right before bedtime and that did help for a while. It would help me to fall asleep quickly. But even that does not seem to be helping as much. Is there anything else I should try? I have had years of success but an now suffering again.
Robert S.
A Medical Reply
You have been very lucky to get by so long using just the
dopamine drugs. Our rule is that once you have developed augmentation with one
short acting dopamine drug (Permax), you should not go to another as
augmentation will definitely recur. It sounds like you are having very
significant augmentation and adding gabapentin will work only as a temporary
measure.
At this point the best suggestion is to get off the Requip completely so that
the augmentation may partially or completely reverse itself. This can be done by
transitioning to a longer acting dopamine drug but this may just kick the
augmentation problem down the road (considering the high dose of Requip that you
currently are taking).
A better approach for most augmented patients in your situation would be to
transition to an opioid. Most physicians are not familiar with this technique
and do not have the expertise or willingness to institute it.
Sent: Thursday, November 09, 2017 4:27 PM
Subject: anti-depressant medications for RLS patients?
I review the RLS website occasionally, looking for any new info on
anti-depressants that may have come on the market which do not make RLS worse.
Would you have any new information? The SSRI’s make my RLS worse and I tried Wellbutrin but it made my heart beat too fast.
Patrice M.
A Medical Reply
There are really no new antidepressants that don’t make RLS
worse since most all of them are based on the SSRI and SNRI type of drugs (which
increase serotonin and make RLS worse).
Abilify (not really an antidepressant) may help some patients with depression
and usually does not worsen RLS.
An older antidepressant, desipramine may also not worsen RLS and might help.
Sent: Friday, November 10, 2017 9:47 AM
Subject: PLMD with MS
I have PLMD due to having MS. I tried ropinirole and had a terrible rebound
effect, making the problem worse. I asked my neurologist if there was something
else I could try and her reply was "no".
My question is, if I tried the one and it didn't work, then would the others in
the same family cause the same? I don't understand why I couldn't try another
one.
She did try Klonopin and not only did it not help, but I hated that doped up
feeling I could not shake off.
She did however put me on a 2nd muscle relaxant, Zanaflex, and I am finally
getting more sleep and not needing to get up and walk it out as often.
Previously I had to get up sometimes once every hour. So I am thankful for that.
Teresa B.
A Medical Reply
We generally do not recommend treating PLM as they have never
been proven to cause real sleep disturbance or next day fatigue. However, if you
were to treat PLM we generally would treat it similar to RLS. We try to avoid
the short acting dopamine drugs like ropinirole and pramipexole as they tend to
make RLS and PLM worse with time.
Klonopin is a very long acting sedative that results in next day sedation so
should not be used for RLS, insomnia or PLM.
Zanaflex is not a PLM medication but sedation is a side effect (usually unwanted
when it occurs during the daytime) which may help you sleep (and thus not notice
any PLM). It may cause next day morning sedation so watch out for that problem.
Typically, gabapentin would be a better choice to treat PLM or RLS and it also
helps promote sleep.
Sent: Tuesday, November 28, 2017 11:33 PM
Subject: Disability due to PLMD?
I'm a disabled veteran, in the middle of disability claim. In my claim I will
reference my PSGs with the "PLMD index." Can you tell me who is the author of
this index? I believe it is the accepted standard of the APSS. Is this correct?
Michael C.
A Medical Reply
You are referring to the PLM index (not PLMD index). The PLM index is one of the parameters we assess but it likely will not aid any disability claim as it is not clear whether increased PLM causes any increase in disability.
Sent: Monday, December 11, 2017 4:39 PM
Subject: Depression medication
I have written to you in the past, and you have been kind enough to respond. I
have run the full gamut with my RLS treatment wise, starting with ropinirole,
which augmented on me, forcing me to an uninformed neurologist who addicted me
to clonazepam.
The benzodiazepine did nothing for my symptoms and after a lengthy withdrawal period, having corresponded with you ,I was able to control my symptoms using 5 to 10 milligrams of oxycodone before bedtime. I have been taking this for sometime with no inclination to increase the dose. On the contrary I am very concerned with using any drug that could become addictive, so I use the drug only at night and in combination with hot baths to allow me to get to sleep.
The reason for this letter is my concern over an increased feeling of depression. I currently take Wellbutrin 300 milligrams a day and have for a number of years with a belief that it has improved my RLS, and helped with depression.
I am now 69 years old and am wondering if there is any additional medication that I could consider to lessen depression. I am not sure if I am at the upper level of Wellbutrin dosage, and if not would this be a first move to increase amount.
Is it worth adding another antidepressant such as trazodone to see if that helps. As I understand it, trazodone should not increase my RLS symptoms. Or , would you suggest I attempt to try a popular antidepressant such as Prozac ,etc. even though there is potential they would increase my RLS symptoms.
Unfortunately there is no RLS specialist on this side of the
country I can turn to (at least none I am aware of ) near Rochester NY, so any
suggestion you might make, would be really appreciated. My doctor is aware he
has had little experience with RLS, so he is very receptive to any changes I
talk with him about in respect with my ongoing treatment. Again at least at this
point in time the oxycodone has provided me with reasonable control of my RLS,
so if I could reduce my depression, that would be fabulous.
John E.
A Medical Reply
Wellbutrin may be increased to 450 mg and it may help somewhat.
Only trial and error can determine its effectiveness. Trazodone is not a great
antidepressant and works better to help RLS patients (and others) sleep but it
may cause next day sedation/drowsiness.
If the depression is significant enough, it should be treated with Prozac (on
another SSRI) or Cymbalta (or another SNRI) despite the likelihood of these
medications worsening your RLS. Most likely, if your RLS worsens, you may have
to increase your oxycodone just a little.
A Reply from John
Sent: Tuesday, December 12, 2017 12:30 PM
Subject: Re: Depression medication
Can I ask if you frequently or infrequently need to use an additional depression
medicine with your patients, even at a risk of increasing RLS slightly, and if
so which one you may have had the most success with. Would this addition of SSRI
or SNRI be in addition to the Wellbutrin.
Still trying to cope with my depression as is , but may need to
try something if it persists.
John E.
A Medical Reply
It is very hit or miss finding the right antidepressant for any
given individual. They all have the potential to worsen RLS but some patients
seem to tolerate certain SSRI or SNRI medications better. However, there are no
better or worse ones in general and what exacerbates RLS in one patient may not
bother (or even occasionally help) another.
Since depression is so common, I am often treating it while trying to reduce the
resultant worsening of RLS.
A Reply from John
Sent: Sunday, December 17, 2017 8:53 AM
Subject: Re: Depression medication
As I mentioned in previous posts, my own doctor is open to any approach I feel
might help with my RLS and present depression, since he has little experience
with the syndrome. To reiterate , prior to my coming down with a severe cold, I
was not suffering from depression. I take between 7.5 and 10 milligrams of
oxycodone per night to relieve symptoms and have been doing so for a year or so.
My doctor believes that I have developed an anxiety/ panic situation which is contributing to my depression ,so he prescribed hydroxyzine to relieve the anxiety. I have taken it and it does have a sedating effect that reduces my anxiety, especially in evenings when I start to take my oxycodone. In the evenings it is like a switch is thrown in that my depression clears and I feel normal. This remains this way till I go to bed , and depression returns in morning.
My question would be is it possible since I take oxycodone, with a short half life, only in evening , could I be suffering minor withdrawal effects that contribute to my day time depression.. I don’t know if I am grasping at straws, but if so I would guess the only way to prove this would be to stop taking it for a period of time, to see if depression clears. Of course that leaves me with dealing with my RLS again.
Previously I took ropinirole with great results for 5 years ,till augmentation got so bad I had to quit. Knowing that augmentation would most certainly return, would it be sensible to reintroduce it for a period of time , while stopping the oxycodone, to see if my depression disappeared. If ropinirole worked , since I augmented in past, do you believe the augmentation would quickly return , like in a week, or would it be a gradual increase again.
I would give anything to find a specialist in my area that I
could go to, who really understands my RLS, but to date I have not found one
that would be aware that certain medicines ,like SSRI’s, could make things
worse.
John E.
A Medical Reply
It is very unlikely that you are withdrawing from such a small
dose of oxycodone but that could occur very rarely. Augmentation may come back
fairly quickly once you have experienced it in the past. Typically, it may take
a few weeks or longer to occur so you should have plenty of time to see if the
oxycodone was responsible for your symptoms (you should know in a week or 2 at
the most after switching from oxycodone to Requip).
You should be aware of all the drugs that worsen RLS and hydroxyzine is usually
one of the worst. Attached is the RLS Medical Alert Card (you can get more of
these from our website) which lists all the medications to avoid and
alternatives that are safe for RLS patients.
Sent: Wednesday, December 13, 2017 4:45 PM
Subject: Might knee replacement worsen my RLS?
Thank you so much for your support and advice when I had arthroscopic L knee
surgery in September. It went very well.
On December 26, I'm scheduled to have R total knee replacement surgery. I'm
aware of the problems with anti-nausea meds and will avoid them again. But I've
been reading articles that suggest TKR could make my RLS even worse--and it's
already a severe full-body experience! I'm 70 years old.
I take 10 mg methadone each morning and 20 mg each night. I'll be permitted
Tramadol again for post-surgery pain. It handled the pain nicely before and
minimized the jerking, too. But TKRs are said to be much more painful post-op
and my supply of Tramadol will likely be very limited. And the possibility of
TKR permanently increasing my RLS symptoms is horrifying.
Any facts and/or suggestions about ways to avoid extra jerking would be very
welcome.
Sharon S.
A Medical Reply
You really should not have a problem. If the tramadol does not help, your doctors simply need to prescribe additional opioids (like Norco or Percocet) or you can take some extra methadone (temporarily).
Sent: Thursday, December 14, 2017 9:30 AM
Subject: Change of medication.
I am a 73 year old male in Great Britain, I have suffered from RLS since I was a
child. I have recently been taking Neupro , 3mg per 24 hours by way of a daily
patch in the evening, but it has been losing it’s efficiency. My doctor has
prescribed Pregabalin starting at 75mg per day going up to 300 mg per day over a
month.
However, it is unclear if I should suddenly stop the Neupro patches in the meantime. I missed one patch and was unable to sleep all night. I would value your advice if I could “tail off” the patches until the Pregabalin “kicks in”. In the past I have take Baclofen and Ropinirole but they seem to lose their efficiency over time. Could I return to medication I have taken before and if so after what period of time?
Many thanks for your time. Over here RLS is deemed a minor
irritation.
Ged A.
A Medical Reply
The problem that you are experiencing may be a little more
complex than you and your doctors may appreciate. Your issue with ropinirole
losing its effectiveness over time is most likely due to augmentation. That is a
worsening of RLS that occurs after taking a dopamine drug like ropinirole for a
while (after months or years of initial improvement). It is quite likely that
the same problem is occurring with Neupro, another dopamine drug.
Stopping the dopamine drug, typically causes a marked worsening of RLS symptoms
for about 1-2 weeks after which the RLS symptoms usually improve. Tapering off
the Neupro slowly while transitioning to higher doses of pregabalin may be
reasonable but it is still likely that you will have a very difficult time for
the first 1-2 weeks.
Opioids do make the transition much easier but doctors in the UK are typically
very reluctant to prescribe them.
Attached is an article that several of us experts published last year describing
the treatment of augmentation from dopamine drugs.
A Reply from Ged
Sent: Wednesday, January 3, 2018 2:34 AM
Subject: Re: Change of medication.
Many thanks for your advice. I have indeed had a terrible two weeks! I am now
taking 300mg of LYRICA per day but the RLS is getting steadily worse. I am
missing whole night’s sleep. I would value your advice. I am torn between
continuing with the LYRICA or asking my Doctor if I can go back to ROPINIROLE or
NEUPRO patches. I have also been offered PRAMIPEXOLE OR CLONAZEPAM.
Thanks again for your interest and advice. At this time it takes two weeks to
get an appointment with a Doctor and three months with a Consultant.
Ged A.
A Medical Reply
My general recommendation would be not to go back on the Neupro
patch and especially not back on ropinirole. Pramipexole has the same issues as
ropinirole but is more potent (will cause augmentation at lower doses than
ropinirole).
Clonazepam does not treat RLS but just knocks out patients so they can get to
sleep. However, it is an addicting medication and has a very long half-life so
it causes next day sedation most often. I do not recommend using that drug.
Even though opioids are hard to get in the UK, adding tramadol (a very low level
opioid which even the UK doctors may be willing to prescribe) may be very
helpful.
Also check your iron and ferritin levels (we like ferritin levels above 50-75
for RLS patients) as if they are low, iron supplementation can be helpful.
Sent: Tuesday, January 2, 2018 6:05 AM
Subject: Searching for help with Restless legs
I am a 72 year old woman living in Australia. I have had restless legs for about
35 years. For about 20 years I took clonazepam at night, but in the last 5 years
my regime has been :
Initially 1x0.25 mg pramipexole at night..... then it became 2x 0.25 pramipexole
.... then ....a slow release 0.75mg pramipexole in the afternoon was added. Now
I also take 2x Lyrica 25 mg at night .
Gradually the symptoms have increased and earlier in the day (augmenting) and I know my specialist will suggest an increase in medication when I next visit him. I have read about Low Dose Naltrexone to treat Restless Legs, and maybe also to help in coming off my current cocktail of medications . Are you familiar with this... and how should this be done ?
Frea B.
A Medical Reply
You have already diagnosed your problem. You have augmentation
from pramipexole and increasing the dose will simply aggravate the problem over
time resulting in higher and higher doses of pramipexole (which become less
effective with time).
The treatment at this point is to get off the pramipexole. Low dose naltrexone
has not helped many RLS in my experience so I would not recommend that approach.
Adding Lyrica will provide temporary relief but the augmentation problem will
continue.
Sent: Tuesday, January 2, 2018 11:42 PM
Subject: Re: Searching for help with Restless legs
I have read the attachment, but feel confused as to what alternate medication ,
which will not end up in augmenting, would help me manage my condition (after
the withdrawal period).
Frea B.
A Medical Reply
My typical recommendation for RLS patients in your situation is
to stop the pramipexole (slow and immediate release) and transition to an
opioid. We usually use oxycodone or methadone which is very effective and safe
if taken correctly.
The problem is that most doctors (even most specialists) to not know how to use
opioids for RLS and are very reluctant to prescribe opioids in general.
Sent: Tuesday, January 2, 2018 6:46 PM
Subject: RLS and CES (Cranial Electrical Stimulation) for depression
In December, 2016 after many years on Pramipexole, I developed augmentation. My
RLS is now controlled with the Neupro patch and Gabapentin. However, in January,
2017, I developed depression and anxiety. I am being treated with Wellbutrin
450mg daily and Clonazepam. T
he depression and anxiety have continued despite this combination. I have recently learned about a new treatment for depression and anxiety. However, I wanted to ask you if this treatment could possibly exacerbate my RLS symptoms? The treatment is Cranial Electrical Stimulation (sold as Fisher Wallace Stimulator) and uses proprietary waveforms to gently stimulate the brain to produce serotonin, dopamine and other neurochemicals responsible for mood and sleep.
It is believed that the effects of CES are mediated through the
limbic system, reticular activating system and hypothalamus. Since these are
potentially the same neurotransmitters involved with RLS, I am concerned about
negatively affecting my RLS symptoms. Hence, my question to you.
Sherry G.
A Medical Reply
Little is known about CES and RLS. However, I suspect that it should not really affect (worsen) RLS symptoms.
DISCLAIMER
The information and advice on RLS given on this web site is for educational purposes only. None of the advice, information or medical treatments should be followed without the supervision of your medical provider. The information presented on this site is not a substitute for your doctor, but should be used to help you discuss your RLS problem with your doctor. Do not undertake RLS medication treatment on your own! Please seek qualified professional medical care to help treat your RLS symptoms.
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Source: Southern California Restless Legs Support Group,
Patient Letters and Medical Answers Section, Page 117.
http://www.rlshelp.org/rlscomp117.htm
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