Sent: Tuesday, October 27, 2020 1:48 AM
Subject: options after failing combination of RLS drugs?
I have had RLS since I can remember as a child. Against RLS in legs and arms I
have been using all label and off-label RLS medications alone and in combination
since 2006. I had several [gruesome] drug holidays in between due to
augmentation using ropinirole and pramipexole.
After a month's drug holiday in 2017, I switched to the only med I had not used before, Neupro patch 3mg, combined with 15 mg oxycodone ER (night only). This worked well for 2 years, but early this year the effect was waning and notably the RLS in my arms got worse. Late September I stopped Neupro for 20 days (during which I took 40 mg oxycodone ER for the night).
I am now on Neupro 3mg and 15 mg oxy ER again for 3 weeks and the same problems seem to arise as earlier this year. What to do? I do not respond well to gaba medications, even at low doses (depression/paranoia), neither to benzos or other 'calming' med (tried that several times).
Opiates seem to do well but I doubt whether it is a good idea to
raise the dosage until the RLS symptoms are manageable (i.e. enough toned down
to get some sleep). Maybe it is an option to take the opiates around the clock
to avoid the daily ups and downs?
Peter B.
A Medical Reply
The most likely explanation about the decreased effectiveness of
your treatment is that you have developed augmentation which is a worsening of
RLS due to taking a dopamine drugs (Mirapex, Requip and Neupro). My suggestion
would be to consider stopping the Neupro. Your RLS will worsen for 1-3 weeks
(you might temporarily need even higher doses of opioids) then it should become
much easier to control.
Although oxycodone ER works fairly well, methadone tends to work better at lower
overall doses.
Also check your iron and ferritin levels (ferritin should be over 100 and iron
saturation should be over 20%).
A Reply from Peter
Sent: Saturday, October 31, 2020 7:35 AM
Subject: Re: options after failing combination of rls drugs?
thank you so much, it is just that I stopped Neupro in October for 3 weeks, and
the RLS remained out of control, so I had to start again. Or is 3 weeks too
short a ‘drug holiday’ for regeneration of dopamine receptors?
Peter B.
A Medical Reply
Stopping the Neupro (or any other dopamine drug) for a few weeks
then restarting it is almost never helpful. You may have gotten close to
obtaining some RLS improvement from being off the Neupro for 3 weeks but
restarting the Neupro just quickly brings you back to square one where you
started.
I sometimes alternate dopamine drugs with opioids but limit the duration of the
dopamine drugs to just below what restarts the augmentation process (which can
be a few days to a few weeks or longer).
Sent: Wednesday, November 4, 2020 6:34 AM
Subject: RLS - Buprenorphine and methadone
Two of us on the HealthUnlocked RLS support page have been using Buprenorphine
20 Patches. I have also tried sublingual Buprenorphine 1mg. in divided doses.
Both of us are suffering crippling bouts of depression and can only relate this
to the opioid, although it is supposed to be a medication for depression as well
as severe RLS. (I have been inclined to depression during my life, but my friend
has not, ever).
When it works, it works, but it seems that when the blood levels
dip even slightly, we plunge into a deep depression.
Both of us have come to this conclusion independently.
(The buccal patch is not available to either of us, and it has not escaped our
notice that it has a far lower dose of buprenorphine).
We are fearful of the suicidal ideation that we are now subject to. Have you
heard of this reaction, and if it is true that this misery is caused by the
opioid, must we somehow 'come off' it? Can it be done? If so, which sort of
doctor do we seek out? A psychiatrist or a neurologist?
Our doctors seem not to know what to do, even to discount it to some degree.
I have feared, I still fear that I might have DAWS as a result of long years on
Pramipexole. I have the profile.
We are both in our mid-seventies, both female, but on different continents.
Jinny H.
A Medical Reply
I have used a lot of buprenorphine and for the most part, it
causes much less side effects than regular opioids. However, I have had several
patients develop depression with regular opioids which also occurred with
buprenorphine. The Belbuca has a lower dose range which might help decrease this
side effect but depression is still an issue.
If there are no other options (which does happen), I add Wellbutrin XL
(bupropion) for those patients as it is a reasonable antidepressant drug and
does not worsen RLS. Other antidepressants may also be helpful but generally
worsen RLS.
A Reply from Jinny
Sent: Wednesday, November 4, 2020 10:49 PM
Subject: Re: DAWS (Dopamine Agonist Withdrawal Syndrome)
It does seem very odd to have this side-effect. May I ask if it is at all
possible that I have DAWS? Have you ever come across it in an RLS patient. I did
come off Pramipexole very fast, overnight, in fact, running away in extreme
distress.
I shall attempt Wellbutrin, thank you.
Jinny H.
A Medical Reply
DAWS is not a very well understood syndrome. I have taken many
hundreds of patients of dopamine agonist drugs and have rarely seen real DAWS.
In addition, I typically try cold turkey even with fairly high doses.
I can’t say that you don’t have DAWS but it is not a very common issue.
Sent: Thursday, November 19, 2020 4:39 AM
Subject: Eva Hart - Severe Restless Legs Syndrome Sufferer.
I am 59 years old and I have suffered with Restless Legs Syndrome (RLS) for over
32 years.
By way of some background information, I was prescribed ropinirole back in 2005
at the usual starting dose. Over the years, my RLS symptoms became worse and
worse and I was prescribed higher and higher doses. I then started to suffer
with terrible augmentation and at that time I was taking up to 10mgs of
ropinirole per day. My GP surgery just kept renewing my prescription with no
objection. Having done some of my own research, I realized that I was suffering
with severe augmentation and this was as a result of the ropinirole. With the
later help of my GP, I weaned myself off the drug earlier on this year. It took
me nearly a year and I cannot begin to tell you how horrific my withdrawal
experience was. Needless to say, I will never touch another dopamine agonist
again!
Having read your Mayo Research paper commending the use of opioids to treat
refractory RLS, I have tried different combinations of drugs, namely codeine,
tramadol, oxycodone, gabapentin and pregabalin without success. I then came
across some research on the use of Temgesic, which is being used to treat RLS in
the United States and how well patients were doing on this.
In light of this, I wrote a letter to my consultant asking to try Temgesic and I
am pleased to say that he agreed for me to try it. So, I am currently taking 300
mg of Pregabalin and 2 x 200 mcg of Temgesic. After a bit of a shaky start this
combination was working wonderfully. I was experiencing no daytime, evening or
even night time RLS symptoms. It was bliss!
However, during the last few days, I am beginning to experience RLS symptoms
again in the late afternoon and evening. In addition, I am now getting
breakthrough symptoms in the early morning. I'm perplexed as to why this is
happening. I would mention that these symptoms are nowhere near as bad as I had
previously experienced, but are becoming rather annoying, as you can appreciate.
I was given your email address by a member of a UK RLS support group and I
understand that you are a leading expert in the United States in treating RLS.
In light of your great expertise, I was wondering if you had any thoughts as to
why my symptoms are returning. Should I up the dose of the Temgesic? If so, by
how much? I am taking 100mg of Pregabalin and 200 mcg of Temgesic at 5.00 pm. I
then take 200 mg of Pregabalin at 9.00 pm and 200 mcg of Temgesic at
10.00/10.30pm.
Eva H.
A Medical Reply
There are several reasons why your RLS is worse. You could have
lower levels of iron/ferritin (you should have these checked and done while
fasting overnight), other medications might have been added that worsen RLS
(check our website for the RLS Medical Alert Card that lists all these RLS
unfriendly medications), increased stress (not uncommon with the recent Covid
pandemic), decreased sleep, etc.
If none of the above issues are relevant, then it is difficult to say why your
RLS is worse. There are 2 options. You can either increase your second dose of
pregabalin to a maximum of 300 mg (assuming it does not cause next day sedation)
or increase your Temgesic. The Temgesic can be increased by 100 mg increments
(1/2 tablets) until you find the optimal dose (you should easily achieve this
with one or 2 increments).
Sent: Monday, November 30, 2020 7:51 AM
Subject: Switching meds
Quick question about switching meds due to change in insurance.
I have been pretty well controlled on 2 mg of Suboxone (brand), for 3 years now. My Dr. recommended trying subzolv. Any suggestions on how these 2 meds compare in treating RLS? There is an enormous difference in cost from a Medicare perspective.
Nancy W.
A Medical Reply
They are both similar buprenorphine and naloxone-containing formulations.
However, Subzolv gets better absorbed so a smaller dose of Subzolv would be equal to a mildly higher dose of Suboxone (but your mileage may vary).
Subzolv also come in many more strengths than Suboxone so adjusting the dose might be easier. Otherwise, they should both work fairly similarly for treating RLS.
A Reply from Nancy
Sent: Saturday, February 13, 2021 8:32 AM
Subject: Diagnosis for writing suboxone
Right now I am somewhat controlled on 2mg. Of suboxone split twice a day, and I see an addictionologist who writes it for me. I viewed his last statement, and he puts down psychotherapy (which he does not do)—-and of course I have to give him a urine test every time - so he writes down drug screen.
I have been in total abstinence from alcohol for 39 years and have no psychological issues. Is there anywhere else I can go to get suboxone written without them treating me like a drug addict?
Nancy W.
A Medical Reply
The issue here is that Suboxone is only approved by the FDA for treating opioid addiction and generally has only been written by doctors who have passed a certification test on its use for treating addition.
There are a few RLS doctors who prescribe Suboxone for RLS off label. I am not sure what diagnosis they use to get it approved. I do not prescribe Suboxone. Instead I prescribe Belbuca which is approved for pain treatment (we use the diagnosis of RLS pain) and contains the same buprenorphine as Suboxone but at lower and very effective doses.
Sent: Wednesday, December 16, 2020 9:56 PM
Subject: RLS Help
I am a 55 year old with a RLS that started within the last month. I have many other conditions, including Lupus SLE, Sjogren's, Hypoparathyroidism & Chronic Pain to name a few. Needless to say, I am on many prescriptions. I talked to one of my doctor's about my RLS & he prescribed Ropinirole.
I was trying to do some research about drug interactions and found very limited information. But, I did learn a bit about how each drug works and came to my own conclusion that it probably would not be a good idea to take them together. I wanted to run my reasoning by you & see if you agree.
It would be worthy to note, I have experienced RLS in the past, many years ago. At the time, I took Valium for it & it was very effective. But, because I am on opioids they will not give me a Benzodiazapine, even though I was on a stronger opoid at the time I took it with no problems. In any case, I can't get that now. From what I read on the RLS Help page that you posted, it sounds like opioids may help with Ropinirole. For clarification, I am on Oxycotin ER 30mg, and Oxycodone 10mg for break through pain (which I take very infrequently).
I also take phentramine for weight loss. My understanding is that Phentramine increases Dopamine. Ropinirole decreases Dopamine, and therefore I determined that they would be contra-indicated. I figured they would negatively impact the effectiveness of each drugs desired outcome.
I also take Hydrochlorothiazide, which from your site, I see is in the list of drugs to avoid. This drug was prescribed to me for Hypocalcemia, caused by my Hypoparathyroidism. When my Rx for Natpara (parathyroid hormone replacement) became temporarily unavailable, I had to go on this to help increase my calcium level. When I went back on the Natpara they did not discontinue the Hydrochlorothiazide, this resulted in my Potassium level dropping below normal. Therefore, they are now Discontinuing the Hydrochlorothiazide.
Which all lead me to my following thoughts and questions: the Phentramine, which increases my Dopamine, was started about 2 months ago. And, my Potassium dropped within the last month. I started having RLS symptoms 3 to 4 weeks ago. Could my low potassium and increased Dopamine have caused my RLS? Now that I'm going off of Hydrochlorothiazide might the symptoms resolve on their own, or do you think the increase in Dopamine could also be effecting it?
In the event that RLS does not resolve, and if you agree that Ropinirole would not be recommended for me. What would be a good alternative? I already have Oxycodone and can take up to 6 per day. Would this be effective? Also, I have taken Lyrica in the past for Peripheral Neuropathy, which caused a burning sensation in my feet at night when I was trying to sleep. It was very effective. Would this be a good or better alternative?
Julie L D.
A Medical Reply
Trying to figure out how dopamine is involved in RLS can be very confusing. Phentermine most likely increases dopamine levels which might result in a mild improvement in RLS symptoms (there is not very much of a boost in dopamine levels). Ropinirole acts like dopamine so increases the overall dopamine effect so would only be additive to anything else that increases the overall dopamine effect on RLS.
The real issue with ropinirole is that it markedly helps RLS initially but over time markedly worsens RLS (called augmentation). As such, we experts have moved the dopamine class of medications like ropinirole away from drugs of first choice (will be published shortly in Mayo Clinic Proceedings). For this reason, we suggest that staying away from dopamine drugs like ropinirole is a very good idea.
Potassium levels also have no effect on RLS.
Adding Lyrica is often a very good idea as it typically helps the RLS and allows for lower doses of opioids like oxycodone.
Benzodiazepines like Valium help RLS patients sleep but do not improve RLS symptoms. They can become very addictive and tolerance often occurs.
Date: December 18, 2020 at 1:18:12 PM PST
Subject: RLS help (Canadian) needed
By way of re-introduction I have asked for your help twice in the last 19 years,
and the advice given and results achieved have been very successful ---reference
my emails to you from Pat Keilhau May 10, 2001 and again, Pat Keilhau July 12
2006.
So at age 83, I need your help again!
In 2001 the start of my Mirapex treatment suggested by you was a huge
breakthrough for me!
By 2006 I was at 3X.25 mg. Mirapex plus 1X5mg. Nitrazepam nightly. At this time
I was experiencing more sleepless nights and was concerned about increasing my
dosage. You suggested I stay the course with Mirapex, but also try Gabapentin
300 to 600 mg. per evening. I tried the gabapentin for a short period (can't
remember the dosage) but side effects, nausea and headaches resulted, so my
family physician advised me to stop the Gabapentin.
The good news, strangely enough, is that during the time period 2006 to the
fairly recent past I have had on-going success with the Mirapex, I also managed
to reduce the Mirapex to 2X.25 mg. and Nitrazepam to intermittent usage by
reducing the strength to 2.5 mg. per night and very often no Nitrazepam at all.
In this time period occasionally, every month or so, the RLS became very severe
at which time my husband's deep leg massages really helped.
I should mention that since 2011 I have been taking Tramacet (TRAMADOL/ACET
37.5/325) as a pain relief for increasing pain due to knee, hip and back
arthritis.
In the last 6 months I began experiencing some early evening RLS symptoms
leading me back to 3 X.25 Mirapex and an intermittent return to Nitrazepam.
Quite recently, however (the last three to 4 weeks) my RLS has worsened
requiring 3X.25 Mirapex and sometimes 2X5 mg. Nitrazepam. In light of this, last
week my family physician (who is very receptive to your and RLS Foundation's
guidelines and advise) gave me a prescription for Gabapentin 100 mg. capsules
with a view to perhaps eventually replacing the Mirapex as you had suggested in
2006.
Pat K
Waterloo Ontario
A Medical Reply
The problem is that you have been experiencing dopaminergic augmentation from being on Mirapex. This has definitely been occurring for many years as you kept needing higher doses of Mirapex. You did get some improvement with lowering the Mirapex dose but this only works temporarily.
It is very unlikely that adding gabapentin will be helpful
as you have already had side effects and gabapentin most often does not work as
well once a patient has been on a dopamine drug.
The most effective treatment is to get completely off the Mirapex. This can be
extremely difficult without the use of a potent opioid like methadone (very
difficult to get in Canada) or oxycodone/OxyContin (which is more readily
available depending upon your doctor). With an opioid, the transition is much
easier and after a few weeks of increased RLS (after stopping Mirapex), the RLS
gets much easier to treat and requires (usually) a low dose of the opioid. This
is typically a very effective and safe treatment which can be sustained
indefinitely.
Sent: Monday, December 21, 2020 5:28 PM
Subject: Nexplanon (estrogen implant) causing RLS?
I got my Nexplanon in on September 11, 2020, and since then it’s been hell. Long
story short, almost exactly a month later, I had a panic attack which turned
into a tic attack (both verbal and motor, I don’t usually have tics). This took
3-4 days to subside, then I was left with RLS. It started in my left leg, in the
inner thigh. It was in my arms as well. My symptoms were all day, but worsened
around 4 PM. I was given 300 mg of gabapentin, 3 times per day in October to
help, and it did (a little). I would’ve suffered more without it. In the past
few months, the RLS has gotten worse. I’m not sure if it’s from hormones, or if
it’s because I’ve been bleeding (to varying degrees) since I got the birth
control. The gabapentin isn’t helping as much anymore, and I can’t talk to my
neurologist about a switch to Lyrica or gabapentin enacarbil because he retired.
My PCP keeps pushing ropinirole, but I don’t want to touch dopamine agonists
unless I absolutely have to. I have no idea what my iron stores are like right
now, but when I had some lab work done on October 29th, these were the results:
RBC: 5.2 m/UL Ref: 3.7-5.5
HGB: 15.9 g/dl Ref: 11.8-16.8
Hematocrit: 48% Ref: 36-49
Serum Ferritin: 232 ng/ml Ref: 15-150
TIBC: 286 ug/dL Ref: 250-450
Iron Saturation: 15% Ref: 15-55
Serum Iron: 43 ug/dL Ref: 27-159
UIBC: 243 ug/dL Ref: 131-425
I strongly feel like the ferritin level was falsely showing as elevated from
inflammation. My biggest questions are, can iron deficiency cause RLS or only
worsen pre-existing RLS? And do you have any knowledge of progestin only birth
control causing RLS? If this continues even after I get my birth control out,
would I have to be put on a dopamine agonist and suffer augmentation before
being given anything stronger? I don’t want to sound like I’m drug seeking, I’m
just scared of the RLS being worse.
Also it might be worth mentioning (maybe?), I have a condition called IIH (pseudotumor
cerebri), and I was also born with bilateral clubfoot, the left worse than the
other. The left leg is the problem leg in my RLS, it’s definitely much worse
than the right leg. I can sometimes get relief from the RLS by bending this leg
and bringing it up onto the couch, or by turning only my left foot and pressing
it into the ground. Kind of in the position it was in when I was born. No need
to comment on this if you don’t see it as necessary, I just figured someone else
might’ve had the same experience and would see they aren’t alone in it.
Bonus question: Do benzodiazepines and opiates/opioids calm the restlessness and
not just the pain?
Nikayla G.
A Medical Reply
You are mostly right about your own answers to your
questions.
We feel that RLS has a genetic basis but also needs other factors
(environmental, drugs, stress, etc.) to bring it out. That is why identical
twins only have about an 85% concordance for developing RLS. It is likely that
the combination of anemia/iron deficiency and your hormonal therapy have
triggered your RLS. However, it is not clear that stopping the hormonal implant
will result in improvement (although there is a reasonable chance that it
might).
I agree that you should have your iron an ferritin levels (done fasting) redone.
Based on your low iron saturation (that is the most dependable value when the
ferritin is high which as you mentioned can be very elevated with inflammation).
If you iron saturation is less than 20%, I would recommend discussing an IV iron
infusion with your doctors. That has a very reasonable chance of improving your
RLS.
I agree with you about starting dopamine agonist drugs. In the soon to be
published third edition of the Mayo Clinic Algorithm, we no longer list dopamine
agonists as first line/choice drugs. Given your dose of gabapentin, it is not
clear that a change to Lyrica or Horizant would make that much of a difference
(since gabapentin gets well absorbed at doses below 600 mg per dose).
Adding a small dose of an opioid would likely be very helpful but you will
definitely find great difficulty finding a doctor to prescribe them.
It is very common to have one leg worse than the other and various
movements/stretches of that leg typically helps.
Sent: Sunday, January 10, 2021 7:24 AM
Subject: Restless Leg Syndrome and surgery
I am a Restless Leg Syndrome sufferer who is about to have surgery for breast
cancer.I am told that some medications/ drugs given during or after surgery can
exacerbate RLS ,which I would obviously like to avoid.
Can you offer any information or advice in this area please? I think that common
anti- nausea drugs worsen RLS and wonder if there is an option which prevents
this.
Anne B.
A Medical Reply
There is a very simple answer in that the newer drugs like
Zofran do not bother RLS.
However, you should look on our website (www.rlshelp.org) and download a copy of
our RLS Medical Alert card. It contains all the drugs that worsen RLS and
alternatives that do not. Print it out and hand it to your doctors.
Sent: Tuesday, January 12, 2021 9:26 PM
Subject: Temgesic/Methadone/Subutex
I first heard of you from a lady you helped in Australia in the restless legs
group. Our doctors in Australia do not have any or little knowledge of
medications for restless legs.
I have severe restless legs in my legs, arms and body every night and during the
day My age is 85, and I am caring for my husband who has Alzheimer’s, I have
also been diagnosed as having macular degeneration. I need to be able to sleep
just to cope with every day life.
I have been on all the dopamine agonist medications on which I developed a
compulsive behaviour and also augmented. I was on Lyrica but it caused me to
have swollen legs with fluid. I had a massive DVT fifteen months ago so I become
very anxious at leg swelling. I have also been on Targin and Tramadol and
Norspan Patch 15mg., they were all ok for a short while then no longer were
effective.
I have been reading about Temgesic and Subutex, but have
been told because the Norspan patch is no longer effective then neither would
the Temgesic be. I would not be able to get Subutex prescribed in Australia. The
other option I may have is Methadone, if I can get a doctor to prescribe it
because it is usually only supplied to addicts.
Maureen G.
A Medical Reply
Methadone is typically the most potent/effective treatment
for RLS. It is fairly easy to prescribe this in the USA but I suspect that it
will be very difficult for you to get a prescription for it in Australia (for
treating your RLS).
Targin is also a very reasonable choice. Do you remember what doses you took. It
could just be that you need higher doses for it to be effective.
Tramadol is a weak opioid like drug so failing it does not have any implication
for doing well with more potent opioids. The Norspan patch (buprenorphine patch)
has a slow steady delivery system and may not be effective for RLS as higher
doses may be needed. Temgesic is a better choice for treating RLS as it is much
closer to Belbuca that I find to be very effective for treating RLS. Again, you
may need significant dose adjustments until you find the correct dosing level.
A Reply from Maureen
Sent: Monday, March 1, 2021 2:16 PM
Subject: Meds.
I am on 10mg oxycodone for severe restless legs, one tablet in the morning and
one at night, they were very effective however like other medications I have
become used to them and they are no longer effective, I really do not want to
keep increasing the dose.
In the past I have been on Sifrol but developed augmentation and a compulsive
behaviour disorder, also Lyrica which caused puffy swollen legs with fluid.
Tramadol 50mg, twice a day, which I also got used to, also the Norspan patch
which wasn’t effective.
I would really appreciate your suggestions as to what medication would be
suitable for me and how could I avoid getting used to it after a couple of
months.
Maureen G.
A Medical Reply
Typically, patients do not become "used to" opioids at the
doses used for RLS (including your dose). If you need more medication, there may
be something else triggering this issue. Possibilities include decreased
iron/ferritin levels, increased stress, decreased activity levels (which is
common with this Covid pandemic), the addition of drugs that worsen RLS (there
is a long list of medications including OTC medications), etc. They are enough
other causes which cannot always be easily found that could be causing your
increased need for treatment including the natural worsening of your RLS with
time.
So, instead of looking for a different treatment, look for a cause of your
worsening RLS.
A Reply from Maureen
Sent: Saturday, December 4, 2021 3:26 PM
Subject: Restless legs
I am hoping that you will give me some advice. I am using Targin one 2-1/2 mg in
the morning and one 5mg at night for my severe restless legs. I was on twice
that amount but I became very sleepy and was falling asleep all the time and at
my age of 86 I can’t take the risk of falling so my doctor halved the dose,
however the lower dose does not stop my restless legs. I can cope with restless
legs in the daytime but not the night. I have tried Sifrol but I developed a
compulsive disorder on it and I also augmented on it. I also tried Lyrica but
developed swollen legs with fluid retention.
I am in Australia and our doctors don’t know anything about
restless legs. I also have a painful chronic back condition that the 10mg Targin
helped but again it’s no good if I am falling asleep all the time.
Maureen G.
A Medical Reply
The medication that might be quite effective and has much less chances of side effects is the partial opioid, buprenorphine (Temgesic). It is available in very low doses and usually relieves RLS symptoms with much fewer side effects than regular opioids.
A Reply from Maureen
Sent: Thursday, December 9, 2021 6:33 PM
Subject: Re: Restless legs
Upon your reply I asked my Doctor to prescribe Temgesic for my restless legs. My
doctor is not familiar with this. medication, she is looking into it and I am
waiting to hear from her she seems concerned about the dosage because of my age
86.
I am concerned that I may become used to Temgesic and it
will stop being effective. Is it possible to rotate this medication or have a
break for a short time using another med. I augmented on the dopamine agonist
meds and my legs puffed up with fluid on Lyrica it maybe this wouldn’t happen
for short seem use. I have never used Gabapentin or Ropinirole.
Maureen G.
A Medical Reply
Once you find an effective dose of Temgesic, it will likely
stay effective for a decade or more. And even when a higher dose is needed, it
typically needs to be only minimally increased.
Ropinirole is similar to Sifrol and are no longer considered drugs of choice for
treating RLS (I have attached our July article).
Gabapentin might be helpful but can cause sedation/dizziness/confusion/balance
problems so you must be very careful with that medication.
Sent: Monday, January 25, 2021 1:00 PM
Subject: Anticholinergics and RLS
I have Refractory RLS and have been treated with three medications the past 12
years. Includes Oxycodone, Lyrica and Xanax. I augmented on three dopaminergic
medications and developed DAWS from stopping my medications abruptly by my
physician.
I also have asthma and had a rough Summer and Fall with breathing. My
Pulmonologist put me on Trelegy inhaler and oral Prednisone 20 mg.for 3 months.
My RLS progressively got worse and I thought I was going to crawl of of my skin.
After doing my homework I found out the Anticholinergic was causing me to be so
miserable. After discontinuing the inhaler I was back to normal in about 3 days.
Do you advise your patients to stay away from that group of drugs?
Plus does Prednisone worsen RLS as well?
Kim M.
A Medical Reply
I happen to also be a pulmonologist so I have a lot of RLS
patients on Trelegy (and other anticholinergic containing drugs) and have never
seen issues with RLS. The same applies to prednisone.
Therefore, it is difficult to explain why you improved off Trelegy.
Sent: Thursday, January 28, 2021 5:01 PM
Subject: Sufferer with restless legs
I am 71 year old female lives in the UK. I start getting restless legs when I
was 24 year old l used to get heavy periods and start jerking my legs at night
My GP used to give me course of iron infusions after that I was ok but now it’s
getting worse I don’t loose any blood now 8 years back I start taking
pramipexole start .with 0.88 mg after slowly increase to 2-tablets of 0.88
even then it didn’t help then I start with rotigotine patch’s one mg I start
getting skin rash with it then I star with pregabalin two tablets of 25 mg did
not help and now I am on gabapentin 300 mg I took two still not enough to stop
my RLS additional I have to take co codamol which I get constipation please give
me advice what can I take I feel too helpless.
Jindo R.
A Medical Reply
It sounds as if you are suffering from dopamine
augmentation from pramipexole (a worsening of RLS from taking pramipexole). The
way we treat this is to get completely off the pramipexole (which would cause a
few weeks of markedly worsening RLS). The best treatment for this transition is
an opioid. Since you already are complaining about constipation from the very
weak opioid, Co-codamol (codeine), then more potent opioids may cause even more
constipation. There are many treatments for this opioid induced constipation but
a much better choice would be Temgesic (at its lowest dose of 200 mcg) which is
a partial opioid that causes much fewer issues, including constipation.
The trick will be to find a UK doctor who will be willing to treat you with any
potent opioid.
Sent: Wednesday, February 3, 2021 7:19 PM
Subject: What Suboxone dose is roughly equivalent to 30 mg methadone?
I took 30 mg of methadone daily for 8 years for my severe RLS. I finally found a
doctor here in Maine who agreed to prescribe Suboxone (he's a pain management
physiatrist and says his clinic can't prescribe Belbuca).
My initial Suboxone dose is 10 mg (8 buprenorphine + 2 naloxone). This is Day 2.
I've spent several comfortable hours and several hours jerking wildly.
Could you give me some idea what Suboxone dose might be roughly equivalent to my
30 mg of methadone? I had occasional breakthrough jerking on that, but quelled
it with 100-200 mg of gabapentin.
I've taken1800 mg of gabapentin thus far today, and can't keep that up--I've had
rashes and hives and once even a convulsion on doses that high. I just want some
hope that I might eventually be prescribed a dose that could meet my needs (I'll
see the prescribing doc weekly; he doesn't respond to calls or messages between
visits--not ideal, but I must accept it).
Sharon S.
A Medical Reply
Firstly, it takes an exam and certificate to prescribe
Suboxone. It takes nothing (except for having a medical license that allows you
to prescribe controlled drugs) to prescribe Belbuca. The pain specialist may not
be familiar with Belbuca and therefore may be uncomfortable prescribing it but I
cannot fathom why his clinic would have any issue with any of their doctors
prescribing Belbuca (which is so much safer than all the other opioids that they
prescribe).
It is very difficult to determine the equivalent doses of buprenorphine to
methadone. The equivalencies are only an average guess anyway so only trial and
error can determine the correct dose. Since you were on a very high dose of
methadone, it is likely that you will need a high dose of Suboxone.
A Reply from Sharon G.
Sent: Monday, February 8, 2021 3:01 PM
Subject: How best to subdue night jerking with Suboxone?
I've transitioned from 30 mg methadone to 16 mg Suboxone (this is Week 1 &
dosage might rise). My prescribing doc (pain clinic) isn't familiar with RLS &
the doc who prescribed methadone for RLS isn't familiar with Suboxone.
How should I divide my dose to keep jerking down by day and sleep the night? The
prescriber's PA just told me Suboxone can make it difficult to sleep, so maybe
that's why I keep waking at 1 am. But I'm wary of taking too little at bedtime
and waking multiple times jerking.
Right now, when RLS hits mid-morning, I take a 90-minute walk and then take 4 mg
of Suboxone. By late afternoon RLS wants to hit, so I keep moving with chores
and take 200 mg of gabapentin if necessary. Around 9:30 pm, I take 12 mg
Suboxone to get through my 40 minutes of PT stretches without jerking, then go
straight to bed. I fall asleep fast, but wake at 1 or 2 am, take 200 mg.
gabapentin, give it 30 minutes to take effect, and sleep soundly until morning.
(I don't dare increase gabapentin above 600 mg/day. Higher doses give me rashes
and hives.)
Sharon S.
A Medical Reply
I rarely have used Suboxone as I use Belbuca which comes in markedly lower doses (you are taking 16,000 mg of buprenorphine while I generally prescribe about 300 mcg of Belbuca). That dose is far beyond what is even used by some of the other RLS specialists who start at ¼ of the 2 mg Suboxone pill and generally don’t go much higher than 2 mg or so. Therefore, it is very difficult for me to advise you on what to do with your present treatment since it is so far above standard treatments for RLS.
Sent: Thursday, February 4, 2021 8:35 AM
Subject: Lyrica side effects
I am a 62 year old man with atypical RLS (involuntary movement, no uncomfortable
sensation) for the past 30 years. I have taken Lyrica (300 mg) for 10 years with
~30% benefit. A provider recently said there is a risk of developing Atrial
Fibration with longer term use. I had not heard that before and wanted to ask
you. I do not experience irregular heart beats or palpitations.
Erik S.
A Medical Reply
There might be a very minimal association between the development of atrial fibrillation and Lyrica. However, this is typically not a major concern.
Sent: Tuesday, February 16, 2021 7:12 AM
Subject: Relistor for opioid-induced constipation
My husband is 89 and has suffered from PLM all his life and this turned into
severe RLS about 12 years ago coincidentally or not after shoulder replacement
surgery. After many trials and errors, he has received pretty good relief from
using methadone for the past several years. It has really been very effective.
However he has suffered from severe constipation because of this opioid. He is
very conscientious about taking all sorts of treatments and consults closely
with his doctors. Nothing seems to help much.
However recently he was given a shot of Relistor when in
the hospital for severely impacted colon. He now has been prescribed a daily
oral dose (150 mg) of Relistor. He has only taken one dose and it worked HOWEVER
he also had a terrible night with RLS flare-up.
What do you know of Relistor and its effect on RLS? What do you suggest for
severe constipation due to Methadone use?
Lucy G.
A Medical Reply
Relistor is methylnaltrexone which blocks the effects of opioids on the bowel. However, it is certainly possible that it might be blocking the effect of the methadone on RLS. You might want to try a different opioid blocker like Movantik. If that does not work, then you can try other non-opioid blocking treatments for opioid induced constipation like Amitiza or Linzess.
A Reply from Lucy G.
Sent: Tuesday, June 1, 2021 12:15 PM
Subject: morphine pump
Once again I am writing you for help and advice. To begin, thank you for all the
help you give the RLS community. I have received your advice and help for over
at least 8 years.
My husband, who is 90, suffers from SEVERE RLS. He has tried the patch which he
discontinued because of augmentation. He tried oxycodone which he had to
discontinue because it was losing efficacy. He is now on methadone…between 15
and 20 mgs (I think “mgs” is the term) during the evening/night (5 at 10pm/ 5 at
midnight/ 5 at 3/ and occasionally 5 at 5 am)
Sometimes this works but there are many nights when he is pacing the floor until
3 am and sleeping during the day. He actually gets good rest in the early
morning waking around 11. He is energetic and does a lot of walking (for
exercise) but this RLS is a real curse.
I have read about the morphine pump. His RLS doctor here said he didn’t think it
would be appropriate for him because his RLS mainly comes on at night. What do
you think?
His doctor has also added carbamezapine which Jim took three times but because
of an odd happening, my husband has discontinued it. Briefly, the other day
after hearing at close range a horrible screeching noise…and he wears a hearing
aid…this noise triggered a severe attack but in his arm. First time in arms and
more violent than anything previously. It was definitely RLS but in his arms….he
ended up in the emergency room it was so severe. One of the doctors, looking for
some reason for this neurological storm (it seemed) thought that maybe the
carbamezapine might have something to do with it…purely a guess but just
couldn’t figure out anything else.
It is a shame that my husband is cursed by RLS. In
every other way, he is an amazingly healthy 90 year old who walks 1-2 miles a
day, works out, has a trainer, travels…but everything is overshadowed by RLS.
Lucy G.
A Medical Reply
In general, we don’t use morphine drips for RLS patients.
Your doctor is correct and generally, methadone works better anyway.
Carbamezapine (Tegretol) does not help RLS and should not be used for that
purpose.
Sent: Thursday, February 25, 2021 5:25 PM
Subject: RLS -Help I'm running out of options
I happened on your site today after once again trying to take a little nap at
3pm that lasted less than 5 minutes as my restless legs kicked in. I have had
restless legs since I was a teen and like most everyone else did not know what
it was. It was sporadic until around age 50 at which time it became unbearable
to sleep. I hope you can help me!!
My general doctor put me on clonazepam 0.5 mg every night starting in approximately 2010. This was initially for anxiety but he said that it often worked for people with restless legs. It did work pretty well for four years for sleeping although during that time I have been on various anti-depressants since 1990 and most recently Wellbutrin 300mg and Duloxetine 60mg tablet have been a great combination. I know Duloxetine can exacerbate restless legs but I can’t go off a combination that works so well and go back to my anxious self.
In 2014 I had to get a new doctor as my general had retired. She was concerned with my taking Clonazepam for so long and tried me on Trazadone. I felt awful on that and stopped after a few nights. She then prescribed Temazepam. I took one 15mg tablet every night and began to sleep somewhat at night on and off again for three years. Then in September of 2017 I had what appeared to be a TIA to my brain and the emergency room referred me to a neurologist who also happened to be very familiar with restless legs and sleep issues. I told him about my legs and he put me on Gabapentin and I stopped the Temazepam. He also tested my iron levels saying they were a little low and I took iron tablets with orange juice for some time but that didn’t seem to help my legs at all. I don’t remember the dosage of Gabapentin but it didn’t work for long so I then was put on Mirapex which also did not work real well.
One of them caused me to binge eat every night as well. By March of 2018 I was getting no help for my legs at all from the meds. The neurologist next tried ropinirole 0.25 mg oral tablet at night only. This worked really well for sleeping at night but I still had bad restless legs during the day. In October of 2019 he told me about the Neupro patch. I was excited to try it. I would put a 1MG patch on in the morning and for the first time I could lie down in the day and sleep at night. I added 0.5 Ropinirole before bed and it was the perfect combination. I was so happy. Slowly the patch began to irritate my skin leaving square shaped looking bruises.
I didn’t mind as I was so happy with the medication however by October of 2020 the patches were leaving huge, red itching welts each time I took them off. The skin was extremely painful while the patch was on and when removed. I read online and sure enough it said a lot of people were allergic to the adhesive. I thought if I just kept trying it my skin would calm down. By December of 2020 not only was I covered with the bruise and welt type looking marks everywhere on my legs, torso and arms but a new rash developed over my entire body. I called my neurologist and he had left the practice on short notice.
I was able to see another neurologist January of 2021 in the same practice and he assured me I was extremely allergic to the patch adhesive and needed to stop them. I was seriously depressed and very anxious about it because I was sure I had found the answer! My neurologist suggested going back to Gabapentin and I said no and no to Mirapex as well because they didn’t work. He then said since the Ropinirole had helped somewhat in the past he asked if I would be willing to try the Ropinirole extended release tablet and increase the Ropinirole tablet at night to 0.5 mg. I was ready to try anything that might work. So I began taking the 0.5 at around 8pm and the extended release at 9 or 10pm. It worked quite well almost immediately. On occasions when my legs were really bad in the day or I was traveling and sitting for any length of time, I would also take a 0.25 Ropinirole to get me to the evening med.
Well here I am today. I am beginning to have restless legs earlier and earlier in the day and even after taking my meds occasionally having them start up when I am drifting off to sleep. In those cases I get up and take an additional 0.25 Ropinirole or a sleeping pill. What should I do? Do I increase the extended release Ropinirole to a higher dosage? Do I up the 0.5 tablet of Ropinirole at night as well knowing I will continue to get augmentation? Do I take a 0.25 at mid-day? I want to be able to take a nap as I sometimes really need one since I get up at 6am and do CrossFit. I also want to be able to sit down to watch a show at 5 or 6 and not have to stand up and walk around while I watch the show. At my neurologists suggestion I tried to buy one of the electrical leg pads you could lay on but the company that made them is no longer in business. I know I am not completely out of options but only foresee me going up and up to maximum doses because of augmentation and then when that doesn’t work being out of choices. I am so scared to be completely out of any choices.
Kathy J.
A Medical Reply
The problem is that although your current/recent
neurologists know more about RLS than most doctors, they are still not that
knowledgeable about treating more difficult RLS patients.
Adding more dopamine agonists (Requip) to a patient that is in RLS augmentation
is only adding fuel to that augmentation fire and will make your RLS
dramatically worse and very difficult to treat. Gabapentin does not work very
well by itself for patients suffering from dopaminergic augmentation.
The treatment is actually very easy and effective. We take patients like you off
all dopamine drugs and replace them with a potent opioid at low dose (typically,
methadone, oxycodone, etc.). If done correctly, the transition should be almost
painless and should also result in complete RLS relief. Unfortunately, very few
doctors understand or are comfortable using opioids to treat RLS.
Sent: Wednesday, March 3, 2021 5:50 AM
Subject: Pramipexole withdrawal and Temgesic in UK
You kindly gave us advice about my wife’s refractory RLS condition a few months ago and I wonder if you can help again. We are in the UK.
My wife Bridget (age 74), has slowly weaned herself off pramipexole (max dose 6 x 0.088 for 8 years) and she took her last dose 2 months ago. She started taking Temgesic last October and this helped with the withdrawal symptoms. The Temgesic successfully controlled the RLS at night until the ‘business’ end of the withdrawal.
The trouble is that she is now taking 3 x 200mcg Temgesic about 2 hours before bed but still has RLS several times through the night. She usually wakes up 4 or 5 times during the night and has to walk or pace for 15 or 20 mins before going back to bed and usually falls asleep.
Often she wakes up for no reason and then some minutes later the RLS starts. This situation has now been going on for 6 weeks or so. Occasionally she has nights where the RLS is so bad she gets no sleep at all. She is not taking any other medication except for the Temgesic before bed.
Can you tell us if you think the situation will improve with time or can you suggest a different regime of medication that might help.
As Temgesic is a relatively new treatment for RLS, Bridget’s doctor doesn’t really have any experience or suggestions.
Brian & Bridget H.
A Medical Reply
My suggestion would be to add another Temgesic at bedtime (and if that does not help, go to 2 Temgesic tablets at bedtime). Additionally, you could consider adding pregabalin (Lyrica) 1 hour before bedtime starting at 75 mg and increasing every 5 days (only if needed) to a maximum of 300 mg (or if side effects like next day sedation occur).
Although it is possible that the RLS will calm down a little more after 2 months of completely stopping pramipexole, it is much more likely that the RLS severity will stay where it is now and just require additional treatment as I described above. However, with proper treatment, the RLS should be controlled indefinitely.
A Reply from Brian & Bridget
Sent: Thursday, March 4, 2021 6:43 AM
Subject: RE: Pramipexole withdrawal and Temgesic in UK
So just to confirm, you suggest increasing the Temgesic to 4 x 200mcg and if
things don’t improve, then reduce to 2 x 200mcg Temgesic?
Also, she has easier access to Gabapentin from her doctor, so could you suggest
a regime for starting that, instead of the Pregabalin – unless you think the
Gaba won’t be effective enough.
Thanks again and we’ll let you know how she gets on.
Brian & Bridget H.
A Medical Reply
The advice was to add another Temgesic at bedtime (total of 4 per day) and if
tat is not helpful then add another Temgesic at bedtime for a total of 2 extra
at bedtime or 5 total per day.
Alternatively, she could add Lyrica or gabapentin. Gabapentin is very often not
that well absorbed at higher doses which is why I recommended Lyrica. If you
want to try gabapentin, she can start with 300 mg and increase by 300 mg every
5-7 days to a maximum of 900 mg. The gabapentin should be taken 1 and half hours
to 3 hours before bedtime.
Sent: Tuesday, March 9, 2021 8:57 AM
Subject: RLS - Health Unlocked
I emailed you during May last year regarding my Refractory RLS and it resulted in my eventually obtaining Temgesic (Buprenorphine) in November after my consultant insisted I try yet something else that didn’t work – (Targinact).
Temgesic was instant, you were right – that night I slept well and have been doing so for some 17 weeks since then. You sent me the Mayo Clinic “Appropriate use of Opioids in the Treatment of Refractory RLS, and I wonder if you have any guidelines mentioning Buprenorphine? This has totally changed my life, RLS has become just an irritant rather than something completely controlling everything I do. I am expecting my General Practitioner to contact me shortly to try to stop me using Buprenorphine and I simply can not go back to waking every half hour throughout the night with spiteful RLS. I thought if I had something in black and white to say that you approve of Temgesic and use it for your patients it would be good ammunition for me.
Thank you again for you help, by recommending Buprenorphine you gave me and my husband our lives back. I don’t know how long this will last but it is wonderful to be able to sleep, sit and rest in a chair, eat a meal without standing and travel in a car.
Linda H.A Medical Reply
When the article on the appropriate use of opioids for RLS was written, we were not using buprenorphine and the newer products like Temgesic and Belbuca (in the USA) were just coming on the market.
There are now several of us RLS experts here in the USA using different forms of buprenorphine to treat RLS. In fact, a new article (the third revision of the Mayo Clinic Guidelines/Algorithm to treat RLS) has been accepted by the Mayo Clinic Proceedings and will be published in the very near future and it contains buprenorphine as one of the accepted drugs to treat RLS.
Just like with opioids, we expect patients to be on this medication for the long-term (most of us are following patients on opioids for over 3 decades with little or no increase in dosage). Since buprenorphine is much safer than regular opioids, we expect even better long-term results with this drug.
You can expect continued excellent control of your RLS with no side effects from the Temgesic as almost all the side effects occur within the first few months and not down the road.
Sent: Monday, August 31, 2020 9:54 AM
Subject: Question regarding lumbar radiculopathy and RLS
I am 30 years old / living in Germany) and I’m suffering from RLS for about four months now. Unfortunately it literally appeared over night. I also had two herniated discs and a spinal stenosis. A surgery was done two months ago and I hoped that my symptoms were coming from my back issues. The surgery took away some pain, but the RLS remains.
I literally scanned the whole internet for some causal relationship between lumbar radiculopathy and RLS. I only found a study from 2014 (Restless Leg Syndrome and Sleep Quality in Lumbar Radiculopathy Patients by Ersoy Kocabicak et al.:
As none of my family members has RLS, I’m particularly worried about the occurrence of my RLS. Thus, I would like to know if you have experienced patients with similar background and a decrease in RLS symptoms after a surgery? As far as I understand, secondary RLS can be alleviated by solving the primary cause. My ferritin level is 177 and I’m currently taking 1200mg of Gabapentin, but I’m still lacking great relief at day and night.
Thomas K
Germany
.A Medical Reply
Most RLS specialists do not believe in secondary RLS
anymore. RLS is likely all primary with comorbid conditions (like kidney
failure, iron deficiency, pregnancy, etc.) which can trigger the underlying RLS.
If back pain from any cause is active, it could trigger or worsen RLS and then
surgery might be helpful. However, most patients find that any surgery tends to
worsen or trigger RLS which is at odds with the article that you quoted.
It is likely that your RLS is unrelated to your back problems. Despite high
ferritin levels, low iron may still be an issue (as ferritin levels are acute
phase reactants which can go up and stay up for many weeks due to unrelated
stress/inflammatory issues). I would recommend rechecking ferritin levels with a
complete iron panel.
Most likely, you will not find a cause of the onset of your RLS but it can be
treated very adequately. Gabapentin is a good start but there are several other
medications. There are also several very good RLS doctors in Germany.
.A Reply from Thomas
Sent: Monday, March 15, 2021 4:32 AM
Subject: Options after failing low potent opioid
We already had a conversation last year and I highly appreciate your
knowledgable comments.
I had started using Gabapentin (up to 1800mg), but it could not handle all of my
symptoms. I switched to Tilidin, which is a low potent opioid available in
Germany. I started with 50mg in the morning and 50mg in the evening. It worked
fairly well, but for a couple of weeks now I'm totally sleepy during the day
even though I was able to sleep 6-7 hours. I slightly raised the evening dose to
100mg, but it hasn't improved that much. As I also experience PLM (especially
aware of it during a daytime nap), I would like to know what you could
recommend? Shall I add Gabapentin/ Pregabalin in the evening or shall I switch
to a more potent opioid like Oxycodone or Buprenorphine? As I read all the
experiences about Buprenorphine on your forum and HealthUnlocked, this drug
seems to be quite promising.
Additionally, I read the consensus guideline for the iron treatment of RLS.
Would you recommend trying an iron infusion? My ferritin level is slightly above
100 and the TSAT is below 45%.
Maybe it is worth a shot to decrease the severity of my symptoms.
Thomas K.
.A Medical Reply
It is difficult to know whether the Tilidin is causing your
daytime sleepiness or something else is responsible. If the Tilidin is the
cause, then changing to a more potent opioid like oxycodone might worsen the
problem. However, buprenorphine often does not cause as much (or any) of the
side effects caused by regular opioids. It might be worth a try. We typically do
not treat PLM and do not feel that it decreases sleep quality. It may disturb
your daytime napping but we discourage daytime napping as it causes issues with
nighttime sleep.
Although you might benefit from an iron infusion, your iron/ferritin numbers are
good and the chances are much lower that you would benefit.
Sent: Wednesday, March 17, 2021 3:37 PM
Subject: RLS aggravated
I am 68 years old, I have taken tramadol for about 8 years and methadone for
about 10. I've had no problem until recently. I take 15 mg of methadone a day
because I have severe RLS about 15 hrs. out of the day & it affects not only my
legs but also arms, back, 1 side of my face. I've been on the same dose all 10
years .
have a chronic condition in 1 ankle- I don't know what you call it but my tendons, ligaments etc. have loosened & its resulted in me walking on the side of my ankle. I elected not to get the surgery because its very painful & not always successful I've started getting occasional sharp pains in my ankle and hip and it seems to trigger a spell of rls. Sometimes it helps if I sit in a tub of very hot water & sometimes it doesn't. I'm really upset about the break-thru symptoms. It shouldn't happen on this dose and this kind of medicine. Have you ever heard of an injury affecting rls symptoms like this especially when it has been effectively controlled with meds up to this point?
Mary P.
.A Medical Reply
Unfortunately, it is very common for an injury that causes
pain to worsen RLS. In fact any stress including pain, anxiety or any other
physical or emotional unease tend to worsen RLS. That is the most likely cause
of your increased need for methadone. However, other issues like lower
iron/ferritin levels, drugs that worsen RLS, decreased activity, etc. should be
ruled out as causes.
In addition, many patients notice that after surgery (even when all the
post-surgical pain is gone), their RLS symptoms may continue to remain
increased.
Sent: Wednesday, April 28, 2021 8:18 AM
Subject: Buprenorphine option
I am seeing my local neurologist to discuss my current treatment for RLS. My
question is whether buprenorphine would be appropriate to consider as an
alternative to oxycodone?
I have read extensively about the use of buprenorphine and am a participant in
the National RLS opioid registry. I have taken oxycodone for several years now,
(10mg split each night) but am concerned about the side effects. Constipation is
a constant struggle, I have to take an additional dose in the middle of the
night when the first dose wears off and I feel tired most of the day. I also
take trazodone to counteract the agitation from the oxycodone and to help with
depression.
I am fortunate that I only have evening and nighttime symptoms. I understand
that buprenorphine has a very long half life and I do not need medications
during the day. Do you think that using buprenorphine would be too much in light
of my symptoms and current dose of oxycodone? I am also concerned about long
term affects on my respiratory system etc.
Mara R.
.A Medical Reply
You have a few choices.
You might consider a change to methadone which is a longer acting opioid. It
would likely eliminate the need for middle of the night RLS symptoms that need
an extra dose of oxycodone. However, it would still likely cause constipation
(which can be treated with MiraLAX or some of the newer opioid related
constipation pills) and depression.
There are no other long term concerns with low dose opioids.
Belbuca (my favorite buprenorphine drug) most often does not cause constipation
or depression. Its 12 hour duration of action usually does not result in next
day sedation (especially when taken early in the evening). Although opioids may
cause some respiratory issues (mostly in severe COPD patients or sleep apnea
patients), there is really not much of a concern in most people. Buprenorphine
has much less of an effect on respiration (although as noted above, that is
mostly not a concern except perhaps when taking a large overdose with regular
opioids but not buprenorphine).
.A Reply from Mara
Sent: Wednesday, October 27, 2021 9:30 AM
Subject: opioid choice
I recently listened to the annual RLS seminar and it was very informative. Thank
you for speaking and serving on the RLS Foundation Board.
I have been taking oxycodone at a very low dose for several years. 5 - 10 mg
nightly. I am a participant in the Opioid study and do read quite a bit trying
to improve my quality of life. My anxiety/depression has increased substantially
causing worse insomnia. I believe you have said that other opioids may not cause
these same side effects. Because I do not need 24 hour coverage (very fortunate)
is there an opioid you could suggest that might not have these same side
effects? I have had these side effects for a very long time. I know it is trial
and error, and everyone is different. Is there perhaps a best first choice? My
neurologist dose not have much experience with different opioids.
I read that adding Lyrica to the oxycodone could help with the anxiety and
sleep. What is your experienced? Your opinion is always helpful when I speak
with my neurologist.
Mara R.
.A Medical Reply
It is possible but more likely that the small dose of
opioids/oxycodone that you are taking may not be causing anxiety and depression.
Medications are often blamed for those type of side effects (and certainly can
cause them) but a short acting opioid (lasts only 4-6 hours) typically is less
prone to cause anxiety and depression. However, if it is causing those problems,
then changing to another opioid (just trial and error can find the right one
since everyone is so different) might be helpful. I find that Belbuca has the
least propensity for side effects but most doctors are not familiar with this
drug and it can be expensive.
Adding Lyrica may help RLS and sleep (and thus also help you decrease the
oxycodone dose). The Lyrica often helps anxiety also.
Sent: Friday, May 28, 2021 3:38 AM
Subject: RLS TREATMENT
I am 64 and have suffered from RLS for the past 15 years I
would describe it as moderate affecting only my legs/feet but it is every night
and obviously sleep is a real issue. It has gradually worsened over time.
I am currently taking clonazepam half a 2mg tablet every other night as my GP
was concerned about the addictive nature of the drug. It does help a little but
still up every night 2/3 times but managing to get about 5/6 hrs which is a lot
better than I've had at other times.
I had a private neurologist appointment a few days ago (been waiting 18mths for
NHS). He suggested going back on to Ropinirole as I've not been on it for nearly
3 years despite suffering DAWS. He suggested the best way forward was to take
Ropinirole increasing as necessary to max dose, then swapping to a different
agonist if necessary and building up again to max and then a third agonist can
be tried before then switching back to initial dopamine agonist again at a low
does. I was told the augmentation can often settle once the drug has had a rest.
Please what are your thoughts on this? It sounds like a
recipe to disaster to me but if there is any chance of it working will to give
it another go. The other suggestion was to continue with the clonazepam as part
of a combination of medications, Pramipexole was mentioned as was Amitriptyline.
He is also organizing some nerve conduction studies and blood test for the time
being.
I have tried taking pregabalin and was on this for approx. 8 months but
unfortunately had very bad side effects from it including losing my peripheral
vision. The Ropinirole that I was on initially worked well for approx. 3 years
until I started to augment on it. I was move to a patch which I found
intolerable with increased restless legs. I was then started on the pregabalin,
and over the past 2 years have managed on zopiclone and now clonazepam both do
help a little with the sleep side but do little for the restless legs
For the moment I am incline to continue as I am as I can manage but I moving
forward most treatments become ineffective and would love some advice and
suggestions of what might be the best way forward. I have at times been so
terribly desperate with hardly any sleep at all and dread the thought of going
back to that. Even now just 1 or 2 nights of a couple of hours sleep are enough
to tip you over.
I have been told by my Neurologist that there are no’ magic pills’ and this I
understand but your help would be much appreciated. Oh my ferritin levels have
always been around 100.
Terri C
UK
.A Medical Reply
Unfortunately, most specialists (and very often including
most neurologists) know little about treating advanced RLS and patients like you
are much more knowledgeable.
You are correct that going back on dopamine agonist drugs is a recipe for
disaster. Once you have augmented on one dopamine agonist we very strongly
recommend that you do not go back on any dopamine agonist (some European RLS
experts like to use long-acting dopamine agonists in this case but many of us
feel that is just kicking the can down the road a little).
Clonazepam and zopiclone are sleeping pills and do not treat RLS (it is similar
to taking a sleeping pill for headaches or back pain, they do not treat the
problem but if you can get to sleep it may temporarily solve your sleep
problem).
Amitriptyline makes RLS worse (check out our webpage at www.rlshelp.org and
download a copy of our RLS Medical Alert Card that contains all the drugs that
worsen RLS and alternatives that are safe).
The best and most effective solution would be to start on a low dose potent
opioid. Here in the USA we start with methadone but that may be impossible to
get in the UK so oxycodone is a good substitute (although you will most likely
find that hard to obtain from most doctors). I have attached my article on the
appropriate use of opioids in the treatment of refractory RLS which may help you
convince a local doctor to prescribe an opioid for your RLS. The odds are
excellent that this will control your RLS.
Your ferritin levels are reasonable but you still might benefit from an iron
infusion (oral iron typically is not helpful) but at your current level, most UK
doctors would not advocate for an iron infusion.
Sent: Monday, June 7, 2021 11:46 PM
Subject: Help
I am suffering from refractory Restless leg syndrome. I have tried several
medications with resulting augmentation. Mirapex, carbidopa/levadopa, Gabapentin
are some of the ones I have tried. I am currently using a 2 mg Neupro patch
which started out working really well. After approximately 2 & 1/2 months I am
suffering again. My practitioner added generic Vistaril to the regime. It worked
good for 3 nights but appears to cause a worsening of symptoms now. It is an
antihistamine, and have read that it can exacerbate Restless Leg Syndrome.
She seems to think that the mild to moderate sleep apnea I
have is the cause of my increased symptoms. I would appreciate any feedback that
you could provide for me. I have an appointment with a Neurologist in November
2021.
Catherine S
.A Medical Reply
The problem is that you are seeing a doctor who knows very
little about RLS You are suffering from augmentation and none of the
treatments that you have been given had a chance for long term success. If they
increase the Neupro patch, you will do better for a few months then the
augmentation will recur and symptoms will continue to be much worse.
We typically treat this by switching to an opioid. Most doctors are not familiar
with this treatment and are unwilling to prescribe opioids for RLS. Most
neurologists will want to increase your Neupro rather than consider opioids. Any
other treatments are doomed to fail in the long term.
Sent: Friday, June 11, 2021 4:46 PM
Subject: Re: Help with DAWS
I wrote to you last October. You requested that report back to you. See below. I
have been through a roller coaster and hell since then and desperately need some
help. Please re-read bottom letter. I will tell you what’s happened since then.
Back in October, my doctor did indeed restart my pramipexole at 0.125 TID.
Within a day I was feeling much better. I continued to feel good for another 4
weeks or so. Then I began slipping back into the deep depression. By the end of
January, I was suicidal and was admitted to the hospital. They upped the
pramipexole dose to 0.25 TID. Again, I felt somewhat better……for a while. The
doctors added Wellbutrin XL 300 mg daily. This helped for a short time. Then
they added Prozac. I am now taking Prozac 40mg, Wellbutrin XL 300 daily. Those
do not seem to be helping at all right now.
I have read that traditional depression therapy does not work on DAWS. And I’m still on the Pramipexole 0.25 TID. And I should mention I am on Morphine SR 30mg QID (120mg per day). The morphine controls my RLS. But the DAWS is destroying my life. The last few weeks, my DAWS symptoms have gotten much worse. I am again sliding toward suicidal ideation. I’m afraid that I may be one of those patients who will never get better. I am full of fear. I simply cannot live this way….depression, dysphagia, severe sweating, no appetite, anxiety, etc. I called the Suicide Hotline today.
I have written a letter to my RLS Doctor at Mayo. I have
contacted my psychologist. No one seems to be able to help me. Is there anyone
in the USA that might be able to help me? I was originally on a huge dose or
pramipexole (3mg per day). The doctors just kept upping it until I ended up with
augmentation. But at least I felt good mentally before all of this started. It
has been 10 months since I first tapered off the pramipexole. Then 9 months ago,
they increased to 0.125 TID, then 0.25 TID in January. But I continue to fall
back into DAWS. And no one has an answer. You were so kind to respond to me
before, and I’m wondering if you have any suggestions for me. Or is my life
permanently destroyed. I cannot live this way. My dopamine system seems to have
been permanently altered.
I will be setting up a virtual visit with my RLS doctor next week. He has never
had this happen to any of his RLS patients, although he has treated several
hundred patients. I don’t know what to do, or where to go. Most doctors are
treating me as a depressed mental patient, but I think it is DAWS. It’s very
difficult to convince them otherwise.
Dan M.
A Medical Reply
As I told you earlier, DAWS is a very poorly understood
condition. However, from my experience (which is likely as much as any other RLS
specialist but perhaps less than some neurologists who treat a lot of PD), I
suspect that the withdrawal from Mirapex triggered an underlying depression
problem (which may have needed a chemical trigger like DAWS). Treating the DAWS
may temporarily improve the depression but once triggered, the depression might
have a life of its own.
Seeing a psychiatrist might be helpful even though most all the other
antidepressant medications tend to worsen RLS. One suggestion that could be
helpful and often does not worsen RLS is Ability.
There may be some experts in treating DAWS (mostly for PD patients) but they
might not have a better answer.
Sent: Monday, June 28, 2021 3:35 AM
Subject: RLS help
Here we are almost 2 years later, I hope you are well and have been free of
suffering during this pandemic!!
I am replying on the original email string for reference purposes, I hope that’s
ok.
After a great deal of “ask”, I finally found a clinic here in Oklahoma that
works with withdrawal but also does research. She prescribed buprenorphine 2 mg
and I successfully made it off of the pramipexole about a year ago now. This is
a success for sure but the buprenorphine certainly comes with its own host of
things too. The biggest issue for me right now is surgery. I am scheduled for a
total knee replacement on July 8th and had to get clear of the buprenorphine
prior to surgery. I had an arthroscopic procedure in February and the
buprenorphine was not out of my system enough with a 3 day quit that they had
suggested and this created some issues with pain meds etc. So for this round I
stopped taking it June 18th - and am taking the pramipexole again leading up to
surgery which feels like a nightmare.
What has happened now almost feels worse than the first
round of getting off of the pramipexole. I have worsened RLS in my arms
specifically and am getting even less sleep. Last night I bumped the dose of
pramipexole to .75 mg hoping for some relief but it was still pretty up and
down. Normally that whole ‘get up and walk thing’ will at least slow it down but
with it being in my arms, that hasn’t stopped it at all. I’m typing this still
feeling the urges to move in my arms. Do you have any experience with this? What
do you tell people to do for surgery with withdrawal and augmentation or
whatever this is?
Erin
A Medical Reply
For most patients who need to be off buprenorphine for a few days or a week, we do recommend going on Mirapex (pramipexole) for that time off the buprenorphine. Since you were on such a high dose before, you might need a little higher dose to relieve more of your RLS symptoms. I would suggest just taking enough to feel reasonably comfortable then switching back to buprenorphine after surgery when permitted.
A Reply from Erin
Sent: Saturday, July 3, 2021 7:06 AM
Subject: Re: RLS help
So it doesn’t matter how long I’m off, I’m still going to have to jump to higher
doses if/when needed. Is there a long term better option for us? Is it possible
to move from buprenorphine to something else. This seems less sustainable I
guess.
The arms are slightly better than they were, I gave in to trying 2 mg and then
maybe moving down but you’re right, the higher dose done to help. I’m still
experiencing other issues that I assume are related to coming off buprenorphine
but I’m not sure.
Erin
A Medical Reply
Some patients can go on lower doses after a hiatus from dopamine agonist drugs. However, usually higher doses are needed after you have been on higher doses in the past (perhaps the dopamine receptors get reset to respond only to a higher level of drugs).
Sent: Monday, July 5, 2021 6:18 AM
Subject: Injectafer IV Iron Infusion
For 5 years, I've been taking Methadone for a severe RLS. It is effective but
gives me many side effects. So I asked my family doctor for Injectafer iron
infusion. (I've already gone through the many other types of treatment for RLS.)
I remember that you said it took 4 to 8 weeks for the Injectafer to be
effective. So I tried getting off the Methadone at 4 weeks, but the RLS symptoms
were severe. So I had to go back on the Methadone. I tried again now at 8 weeks,
but it still isn't working.
I'm back on full Methadone dose. And I'm wondering is there anything else left
to try?
Ed M.
A Medical Reply
Typically, an iron infusion may help reduce the amount of
methadone but not eliminate it. About 60% of RLS patients get improvement with
an iron infusion but a minority (but a big minority) do not. It might be a
matter of how much iron gets into the brain but it is not easy to evaluate that
(it would require a spinal tap or brain biopsy).
You might consider a change to Belbuca which tend to work very well for RLS and
also has much fewer side effects.
A Reply from Ed
Sent: Tuesday, July 6, 2021 6:52 AM
Subject: Re: Injectafer IV Iron Infusion
Belbuca sounds a little safer than methadone, since it is a Schedule 3 drug. My
only concern is my age (70). On the "drugs.com" web site, there is a warning for
older adults using Belbuca. It states that "serious side effects may be more
likely in older adults." And yet all of these controlled drugs have many
warnings.
I am very interested in pursuing this. And I will talk to my doctor about
Belbuca.
Ed M.
A Medical Reply
Since Belbuca is in the opioid class, it will have the same warnings as for opioids. However, it is much safer than regular opioids.
A Reply from Ed
Sent: Wednesday, July 28, 2021 6:47 AM
Subject: Belbuca vs. Buprenorphine
I have severe RLS and have been on Methadone for about 5 years. It gives me many
side effects. And so, as per your advice, I asked my doctor to prescribe
Belbuca.
Unfortunately, my insurance will not cover it, because it is so expensive (I am
told). My doctor has offered to prescribe sublingual Buprenorphine instead,
since it is cheaper.
Would Buprenorphine sublingual tablets be as effective as the Belbuca film?
Ed M.
A Medical Reply
The buprenorphine tabs may be reasonable. However, the dose starts at 2 mg (2000 mcg) while Belbuca starts at 75 mcg. The Belbuca might be a little better absorbed and active but as you can see, the doses are markedly smaller and more easily adjustable to find the lowest effective dose. It is very hard to make an exact comparison between doses of these 2 different forms of buprenorphine.
A Reply from Ed
Sent: Friday, August 6, 2021 7:14 AM
Subject: Re: Belbuca vs. Buprenorphine
I thought this follow-up might be helpful to others in similar circumstances.
I have been on 2 mg of buprenorphine for a week. It controls the RLS symptoms
almost as well as methadone. And the side effects are much milder, as you
originally told me. It looks like a good move, so far.
Ed M.
Sent: Sunday, July 18, 2021 3:16 PM
Subject: Buprenorphine for RLS
You very kindly gave me advice in the past when I suffered panic attacks with
OxyContin. Taking pregabalin resolved the issue and I eventually reduced the
pregabalin without the panic attacks returning.
However, over the past 2 to 3 years my RLS has been severe for 2 hours every
evening and awakens me 2 or 3 times every night.
Several members of RLS UK have managed to persuade their
doctors to prescribe Buprenorphine with astounding results and my doctor
recently agreed to prescribe it to me.
I took my first dose of 0.8mg ( 2 x 0.4mg) last Thursday and for the first time
in decades had absolutely zero RLS during the day, evening or night. I slept 8
hours with 2 brief trips to the bathroom. I was ecstatic. However the next
morning I suffered severe nausea for 2 hours and then vomited. That evening I
took a reduced dose of 0.4mg and again had zero RLS and slept well. However,
today, I have had loss of appetite and nausea all afternoon and indigestion.
These are all listed as side effects but they are debilitating.
I have taken indigestion medicine and it has helped
slightly. Is there anything that can alleviate the nausea? I was so happy to
have found a medication that completely resolved my RLS and allowed sleep. I
really hope it settles. I intend to cut the 0.4 tablet in half this evening to
see if it settles the nausea and indigestion and total loss of appetite whilst
still providing cover for my RLS.
Your advice would be greatly appreciated.
Incidentally, I have started a UK campaign to get RLS
included on the curricula at UK medical schools and for General Practitioners.
The Association of British Neurologists has been extremely supportive but The
Royal College of General Practitioners and the Medical Schools less so. I'm
hopeful that the template letters being sent by RLS UK members will at least
cause the profile of RLS to be raised. It is quite shocking to discover RLS is
not taught at present, whereas rare conditions like Cauda Equina are in the
curricula.
Julie G
A Medical Reply
The drug that we use for nausea in RLS patients is Zofran (ondansetron) which is an anti-nausea drug that is used for the severe nausea that occurs with chemotherapy drugs and is safe for RLS sufferers. Often, very low doses of buprenorphine may be quite effective for RLS.
Sent: Tuesday, July 20, 2021 9:51 PM
Subject: Conversion factor
I currently take 20mg/day of oxycodone/OxyContin to control
my RLS and it works quite well. My primary care doctor and I would like to
experiment with converting to buprenorphine using suboxone. He is unable to
prescribe belbuca so he wrote me a prescription for Suboxone 8-2. Might this be
too high a dose and could I possibly use a Suboxone 2mg-.5 amount and cut that
in two halves?
Paul B.
A Medical Reply
It is difficult to determine the equivalent dose when
converting from a regular opioid like oxycodone to buprenorphine. However, we
typically like to start with the lowest possible dose which is often ¼ of a 2
mg/.5 mg dose. Since your current dose of oxycodone is fairly moderate, you
might have to work up to a higher dose.
However, if you are doing well on the combination of oxycodone/OxyContin, there
may not be a good reason to change therapy. There is always a risk that changing
to a new regimen just for an experiment.
Furthermore, any doctor can prescribe Belbuca. It does not take any special
license and is even less restrictive than prescribing Suboxone.
Sent: Thursday, July 22, 2021 5:48 AM
Subject: Follow up advice please.
Dear Doctor Buchfuhrer,
I hope you are keeping well.
I contacted you back in April 26th regarding severe augmentation I am suffering
on Ropinirole. I very much appreciated your help but need some further advice
please.
You recommended that I withdraw from Ropinirole, cold turkey if I wanted but
with the help of opioids.
My symptoms had been very severe with round the clock pacing, wriggling,
writhing, no sleep, of course you know! Even so I had a massive battle to get
the help and support I needed. It was only because I was so desperate and
suicidal with the distress of it all that a sympathetic GP at my local practice
finally prescribed Oxycodone 5mg, this didn't touch the symptoms but gradually
over the following weeks my dose was increased (very reluctantly) to 1 x 5mg
morning and 2 x 10mg evening, finally this helped and I got relief!
I would have liked to stop the Ropinirole cold turkey but by now I was so
exhausted and quite frankly traumatized I couldn't face such a drop.
Since I contacted you in April I have gradually reduced my Ropinirole from 4 x
0.5mg to 2 x 0.5mg. The last reduction was 12th July by 0.25mg, the first 7 days
after this reduction all was well but then the horrendous withdrawal symptoms
started again, creeping crawling burrowing sensations in my lower back
particularly, abdomen and right leg. It is distressing and feels as if my
insides are trying to crawl out! The symptoms are now pretty much all through
the day until I take all of my Oxycodone 25mg total at bedtime and sleep for
maybe 3 hrs. Then I wake up and my legs etc are bearable until they start again
mid morning.
Sorry, to get to the point! I don't know how much more of this I can take, I am
running out of steam!
I am considering just dropping the last 1mg of Ropinirole all in one go but I am
concerned that my prescribed Oxycodone will not be enough to help me through
adequately. Can you give me an idea please if you think 25mg Oxycodone is enough
to help? I have some extra 30mg Codeine tablets I could also use if you think
this would help. I can't ask for extra Oxycodone because my local practice has
made it clear they are very unhappy about my prescription with one GP even
ringing me up and almost shouting down the phone at me about it and then
reducing my dose without telling me, my husband complained and the dose was
restored! I have also been told the neurologist I am waiting to be referred to
is not happy about the Oxycodone either, I despair!
Also if I do just drop the last 1mg how long will the unbearable withdrawal
symptoms go on for?
I would go private but I don't believe we can afford to! However out of interest
if you can give me the contact details of any helpful RLS knowledgeable
neurologists I would be very grateful.
I have joined the Health Unlocked website RLS forum which has been an enormous
help to me and my sanity through this. I can't think of any other illness,
disease, condition where a sufferer is made to feel so isolated and alone.
Kindest regards,
Annette L
A Medical Reply
There are no doctors in the UK that I know of that treat
severe refractory RLS (and augmentation) at an expert level.
The reason why I often suggest going cold turkey off the ropinirole is that each
time you lower the dose, there is significant increase in symptoms and
suffering. It is often better to do it in one step.
Methadone works better (but that is extremely hard to get in the UK) so you may
need even higher doses of oxycodone (like 30-40 mg daily) for a few weeks after
completely stopping the ropinirole. However, after a few weeks off ropinirole,
you should be able to quite significantly decrease the dose.
Adding pregabalin may also be helpful.
Sent: Monday, August 23, 2021 1:08 PM
Subject: Severe augmentation- Canada
I am a 65 year old female who has had RLS for 20 years. I not only have it in my
legs but my arms as well and it has progressed to just about 20 hours a day
(augmentation). Presently I take .5 mg pramipexole and 900 mg of Gabapentin,
this last medication was given to deal with the augmentation. About 10 years ago
I tried to go off the dopamine agonist by using hydrocodone. It was hell for the
month that I tried making the change and I had to use up to 40 mg of the Opioid
to manage my RLS, hoping it would “reset my clock”. The RLS did not lessen over
the month and I ended up going back to the dopamine agonists. I am very scared
to try again but I know it is only a matter of time before my symptoms will get
worse.
My questions are as follows:
Could you give me an idea of your tapering schedule that you use to get off the
pramipexole and go onto Methadone? How long and how much to taper over time and
how much Methadone to start with?
Would I have to stop the gabapentin as well knowing that the withdrawal from
this medication would be lack of sleep due to its sedative qualities?
I would really appreciate some help given that I live in Canada and it would be
very difficult to be given opioids.
Beverly K.
A Medical Reply
You are correct that it is very difficult to get opioids
(and especially methadone) in Canada (I have several Canadian patients that I
manage in Canada).
There is no need to stop the gabapentin while trying to get off pramipexole
(although once the augmentation is over, you may not need it).
At your dose of pramipexole, I typically just to cold turkey (although I may
sometimes taper) and adequate amounts of methadone (which may be difficult for
you to get and methadone tends to be the most effective treatment for stopping
pramipexole while augmented). With adequate opioid therapy, it is unusual to
have patients suffer through the process of getting off pramipexole if they can
get appropriate dosages of potent opioids.
Sent: Saturday, September 11, 2021 7:46 AM
Subject: Neupro patch and augmentation
I have yesterday stopped using Neupro patch due to strong augmentation, and I
was prescribed extra OxyContin for relief in this period (I normally take a
small dose of OxyContin combined with the patch). My question is: is there
anything against taking the OxyContin around the clock (ie dividing the dose by
3 during the day) as opposed to taking the full dose for the night? The reason
being that the daytime is almost as severe as the nighttime. Would it be more
difficult to step back on OxyContin after the ' holiday' if you took OxyContin
around the clock?
Peter B.
A Medical Reply
We generally do not recommend “drug holidays” for the
dopamine agonist drugs like Neupro. Once you develop augmentation, restarting a
dopamine agonist will cause the augmentation to return, often quite quickly. We
therefore recommend a permanent drug holiday.
Although opioids can be taken around the clock (which may be necessary when
stopping a dopamine agonist for a few weeks), patients can limit the amount of
opioid needed (especially in the morning/early afternoon when RLS symptoms are
typically not as severe) by keeping active (going for walks, shopping, cleaning
your house, laundry, etc.).
Sent: Sunday, September 19, 2021 8:39 AM
Subject: Restless Leg Syndrome plus chronic pain
I was referred to you thru an rls support group i subscribe. I am anxious to
know your opinion/ recommendation. Recently I made a plea for help/suggestions
by writing the following about my situation. I am 77 years old and have RLS/plmd
as well as chronic sciatic as well as joint pain from osteoarthritis.
My first prescription was for 2 mg Ropinirole which was increased to 4 mg within
a couple months. I suffered augmentation for a couple years before researching
rls and realizing that was the problem. My gp as well as 2 different
Neurologists just kept insisting that the RLS was getting worse and that I
needed a stronger dose as well as additional drugs . I finally refused and
weaned off Ropinirole and then they gave me Pramipexole and of course I had
augmentation with that also! When I said "augmentation" even the Neurologists
looked at me like I had lost my mind and claimed no knowledge of it.
I have tried MANY other drugs nearly going crazy. I went to a 3rd Neurologist and he gave me Tramadol and suggested I try Ropinirole again at the lowest dose and desperate as I was I tried it and have done fairly well for the last year or so. Presently I have started having rls off and on during the day so I believe the Ropinirole is causing it and the Tramadol we had to increase. Reading again in rls.org they say Methadone is having some success for rls patients so I asked my gp if I could try it and she right away suggested I see a pain management specialist.
My first visit was a couple weeks ago and he wrote
prescription for very low dose Methadone BUT his first choice was for me to have
a spinal injection. I told him I wanted to try the Methadone but would think and
consider the injection. He told me to stop taking tramadol but continue with the
0.25 mg Ropinirole along with 2.5 mg Methadone and come back in one month. So
far the Methadone is not helping and I sit here awake with my legs driving me
crazy at 2 am!!! I am now scheduled to have the spinal injection on the 28th of
this month.
I do not feel comfortable with the spinal injection but I am desperate for some
relief. I am curious what your recommendations would be for my situation. Thanks
for any thoughts you could share with me.
Linda R.
A Medical Reply
The first suggestion is that you should discuss getting a
spinal injection with your other doctors. If you do not have any spine related
pain (like sciatica) there may be no reason for this injection as it has no
chance of helping RLS.
With augmentation, the goal is to get completely off the dopamine agonists and
stay off (sometimes a low dose will be helpful but sooner or later the risk of
augmentation recurring is quite high). That is likely your current problem. You
dose of methadone is on the very low side. If you stop the ropinirole, you will
have a very significant increase in RLS symptoms for about 2 weeks. After that,
it will be easier to control your RLS. Therefore, you will likely need higher
doses of methadone (10-20 mg per day) for the 2 weeks after stopping the
ropinirole) compared to lower doses (2.5 mg – 10 mg) after those 2 weeks.
This treatment has an excellent chance of success as long as you can adjust the
doses of methadone according to my suggestions.
Sent: Thursday, October 14, 2021 3:14 AM
Subject: Query on Updated Algorithm for RLS
I would be very grateful if you could clarify a point in the recent paper titled
“The Management of Restless Legs Syndrome: An Updated Algorithm" published on
the Mayo Clinic website, namely why isn’t IV infusion recommended if you have
ferritin over 100 μg/L?
I am an RLS sufferer in the UK attempting to receive non pharmacological
treatment and raise my iron levels and I read with great interest the section in
your recent paper regarding IV iron infusions. However I am somewhat confused by
the criteria for starting infusions and I’d be grateful if you could clarify
this for me. In particular this section:
"According to a consensus of RLS experts,18 the base requirement for any use of
intravenous iron therapy in RLS is that the serum ferritin concentration should
be less than 100 μg/L (and not affected by inflammation) and transferrin
saturation less than 45%”
My problem is why the 100µg/L upper limit if you are looking to potentially
raise levels to 300-600µg/L? In my case I started with a ferritin level of
75μg/L which I managed to raise to 140μg/L through oral iron bisglycinate
supplements and I believe I have seen some improvement, namely the intensity of
the urge to move has decreased somewhat meaning it’s less likely to wake me,
takes less time to dissipate when I get up and move, and is generally less
uncomfortable.
I suspect and hope that further increases in ferritin levels will help me but I
seem to now fall outside the criteria for having an iron infusion while I must
be getting close to the limit for increasing ferritin levels via oral
supplements due to the hepcidin mechanisms etc. I could stop taking oral iron
until I drop below 100µg/L but that seems like an unnecessary maneuver to
qualify for IV.
Could you please explain the thinking behind this upper ferritin criteria to
qualify for IV iron? Would you have any recommendations for me?
My situation briefly is that I am a “classic” RLS sufferer, with symptoms at
night and occasionally late evening almost entirely in the legs. I believe I am
idiopathic as I had isolated occurrences in my childhood but a problem with my
back (sciatica/nerve sensitivity/disc abutment against nerve) seems to have
kicked the RLS up a couple of levels. I score around 22 on the severity scale. I
have never taken medication for RLS although used pregabalin for a year for the
back issues, and I have no desire to go back to any medication until and unless
it be comes absolutely necessary.
I would be incredibly grateful if you could find time to respond to this as it
will help me argue a case for IV treatment which I know has been successful in
the case of Kate Condon with whom you corresponded recently and who has
benefitted from the treatment greatly.
Jonathan W.
A Medical Reply
The value of 100 for ferritin came from the consensus
article on iron therapy for RLS (attached).
Some of the experts wanted a much lower level (50-75) while others wanted a much
higher level (150-200). Like any consensus article, compromises are made and
experts meet in the middle.
What really happens is that we use the blood levels of iron and ferritin as a
surrogate marker for how much iron is in the brain. This does always work very
well as blood values may not reflect brain iron/ferritin levels. We would need a
brain biopsy (this will never be done of course) to actually determine how much
iron is actually in the brain.
I have patients who do not get enough iron in the brain unless their serum
(blood) ferritin levels are greater then 100, 180 and even as high as 230. We
can only determine this value by infusing iron then checking serum ferritin
levels when patients start complaining about increased RLS symptoms (then seeing
that another iron infusion resolves the symptoms).
Some experts worry about iron overload which accounts for the caution and the
lower recommended doses. We often get ferritin levels as high as 400-500 without
such issues.
It is very difficult to raise iron levels sufficiently to dramatically improve
RLS symptoms.
The other concern is that insurance companies typically will not cover iron
infusions with ferritin levels above 50 (some have even lower limits and will
only approve an infusion after showing that several months of oral therapy is
not helpful). It is easier to get insurance coverage for a repeat infusion once
an initial one has been approved for very low ferritin levels.
Sent: Monday, November 1, 2021 10:28 PM
Subject: SSRI anxiety and RLS
Hi I feel stuck. I have been on SSRIs for 25 years, mostly Lexapro. Six years
ago, I developed RLS. I tried tapering off the Lexapro, and went from 10mg to 3
mg over three years. I received a job promotion and was slammed by crippling
anxiety, almost unable to function. I began to sleep very little and have lost
weight from low appetite. My old psychiatrist told me I needed to go back on the
SSRI at 10 mg. Only three nights at that dose and my leg feels horrible, all day
now. Taking 150mg pregabalin (for 5 nights now) but I don’t know if it will
help.
How can I balance my need to control the intense anxiety and the RLS at the same time? Should I consider a dopamine agonist? (Terrifying) Can I continue with the SSRI and treat the RLS at the same time?
Bruce K.
A Medical Reply
Typically, we treat around antidepressants like Lexapro
that worsen RLS when they are necessary to control anxiety or depression.
One option would be to increase the pregabalin (for one daily dose, the upper
limit is typically 450 mg).
If that does not work, you can consider adding a small dose of an opioid which
typically works very well. I tend to avoid adding dopamine agonist drugs.
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 122.
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