Sent: Tuesday, February 14, 2023 11:02 PM
Subject: RLS
I have been taking Pramipexole for 20 years and the dose reached 6mg before I
realized there was a problem. I have since cut down to .25 mg over the last two
years but then hit a wall. I have tried taking Buprenorphine/naloxone (generic
Suboxone) but hated the side effects. I am now taking .75 pramipexole and
tramadol 10mg but I am loosing the battle. I get very little sleep unless I
increase either the Tramadol or the pramipexole. I have just been prescribed
gabapentin 600mg and have been taking it for two weeks. I am not noticing any
improvements but it’s early days. The problem is I have COPD and I am 74 yrs
old.I also have COPD. and there are risks I gather?
Here is my worst fear: I can see only two options .:
1) I can either carry on with the pramipexole and try to limit the need to
take more. But sooner or later increasing the dose won’t make a difference and I
will die a horrible death.
When I am short of pramipexole I am incapacitated. I lie on the floor and
the spasms are continuous, violent, and continuous. The mental anguish is also
terrible. I would have to suicide.
2) I can increase the Tramadol and try to get off the Pramipexole but with
no guarantee that my brain will ever heal. 6MGs of pramipexole for so many years
has done a lot of damage and will it ever be repaired? I am told it could take 3
weeks to get free of the pramipexole . The longest I have survived withdrawal
from the tiniest reduction of pramipexole is 4 hrs of torture writhing on the
kitchen floor with no sign of a let up...and it took days to recover. I can’t
eat can’t drink cant speak or use the bathroom. The mental anguish is terrible.
I don’t think I can go through this alone.
I have had my Ferritin levels checked and I think they are ok. Aside from
the above I am fit and active, I sail I supervise pHd students I am an
internationally acclaimed artist. I still make new work. I don’t want to die yet
but I am getting tired and sick.
Chris W.
A Medical Reply
Pramipexole at 6 mg is a very high dose but it is not clear
whether it has caused any permanent damage over what smaller doses can produce.
The problem is that it is much easier (but still hard) to cut down the dose of a
dopamine drug but getting off completely is extremely hard.
Gabapentin most often does not help patients get off dopamine drugs.
What works the best are opioids. You already tried buprenorphine which
unfortunately caused side effects. Tramadol is helpful but generally not potent
enough to get completely off the pramipexole.
However, there are many opioids that can help get off dopamine drugs and
sometimes it may take several tries of different opioids to find the one that
resolves your RLS without causing unwanted side effects.
The RLS does improve significantly within 2-4 weeks off the pramipexole
but does not ga away completely. That is why the opioid that gets you off the
pramipexole will likely be needed indefinitely but at a lower dose than the
first few weeks after stopping the pramipexole.
There are very few patients who cannot get very good control of their RLS
with proper treatment.
A Reply from Chris
Sent: Feb 15, 2023, at 8:47 AM
I have COPD and I have always suffered from Insomnia. At the moment I alternate 2 weeks of CBD and two weeks of Zopiclone. Neither work if the RLS is bad. I understand that everyone is different but is there any opioid which helps with insomnia? It would be such a waste of everyone's time if I started taking an opioid only to find that my insomnia is worse! I feel sure that, if I could sleep for more than a few hours per night, I would have a farm better chance of coping with RLS.
I suspect there are no rules to this game but I would sure welcome any observations you feel you can make.
Chris
A Medical Reply
Every patient is different and what works for one may be horrible for another. I usually start with methadone but I also use oxycodone, oxymorphone, morphine sulfate, hydromorphone, and hydrocodone. I start at the lowest dose and increase the dose until symptoms are relieved or side effects limit further increases.
Older antihistamine drugs like Benadryl do promote sleep but make RLS much worse.
Sent: Tuesday, February 14, 2023 11:28 PM
Subject: WED/RLS and Sex Hormones
I wondered if there is a connection between WED and diminishing sex hormones. As the majority of us in the 'severe' range are ageing women, It seems that there could be. And for those of us who have suffered total hysterectomies during our fertile years, perhaps a connection is more than likely?
I speak not only of oestradiol but also of estriol, testosterone and progesterone, all of which can diminish to extremely low levels. And we know they have a profound effect upon the brain. I would value your opinion, as I am sure would others amongst us.
Bronwen H..
South Africa
A Medical Reply
RLS worsens with age, so that is likely the common denominator for increased RLS symptoms around menopause age. However, we cannot rule out hormonal influences in at least some patients.
A Reply from Chris
Sent: Monday, February 20, 2023 12:16 AM
Subject: Ferritin dropping fast
I had iron infusions between 2018 and 2019. My ferritin went up from 20 to about 350. By March 2021 the level was down to 123. January of this year, it is down to 77.
In late December of 2022, I had breakthroughs of WED in both arms and legs, after two years free of symptoms, thanks to Buprenorphine. Very frightening. There was no explanation, no change of any sort in my diet or way of life. Now I believe it may have been the plunge in ferritin levels.
My doctor wants to give me an injection of Venofer 100 mg. Two weeks later he will test my ferritin. This does not seem right to me, as I believe it might be time for another infusion. I know it takes three months to reach the brain.
Perhaps my doctors attempting to save me money - it is very expensive - but my life is much more important. I am in the 'very severe' bracket, with symptoms in arms and legs every night on inadequate medication/treatment.
Bronwen H.
A Medical Reply
It does sound as if you would be very likely to benefit from an iron infusion.
However, Venofer is unlikely to help your RLS unless given in 200 mg infusions for 5 weeks at weekly intervals. That is why we strongly suggest infusing a longer acting iron preparation such INFeD, Injectafer or Feraheme at 1000 mg.
One injection of Venofer 100 is likely useless to help RLS.
Sent: Saturday, March 11, 2023 7:04 AM
Subject: Lidocaine
Over ten to 15 years ago.I probably would not have been on this Earth any longer if my doctor had not offered me treatment at no cost. Nobody in my area knew what I was subject to. None of the doctors, not even the neurologists or sleep specialists, understood it but I did because I read Doctor Buchfuhrer's book. Anyway, Doctor Buchfuhrer set up a precedent for me which made the local doctors feel more comfortable in giving me the treatment I needed.
I have a simple question now. Maybe it's not simple, though, I'm not sure. I might have to have a toe amputated. I am going to refuse general anesthesia and even an epidural administration (spinal block) if I can; I want to have a local nerve block in my lower leg or foot. I have the list from the RLS foundation on what drugs can be used and what drugs should not be used in surgery, but I don't see Lidocaine listed and I'm not sure whether it would worsen my RLS. My research on the subject leaves me in doubt as to whether lidocaine would be safe for me. Can you clarify this matter?
Dan H.
A Medical Reply
Lidocaine is not an issue for RLS.
Sent: Sunday, March 19, 2023 7:39 PM
Subject: Neupro patch 2 mg and Mirapex .125 Gabapentin 2100 mg
Having skin irritations with Neupro patch, have been on it for 2-3 years and I
do rotate but my stomach is only place left without severe reactions! I feel
like I should start reducing patch slowly before I get to the point of not
being able to use it at all. I'm putting patch on at 4-5 o’clock pm and taking
it off when I awake 7-8 am just to give skin a break. I’ve had RLS for
approximately 20-25 years and have been on Mirapex around 15 -20 years.
Gabapentin I’ve been taking 2-3 years just wish there was something else to help
with RLS and I’m afraid I will augment on these dopamine agonists. Any
suggestions would be greatly appreciated
Cornelia
A Medical Reply
The most common reason that RLS patients stop using the Neupro patch is skin problems. If you have already had augmentation with Mirapex, it is likely that this will occur sometime in future with Neupro so your time would have been limited on Neupro anyway.
When you run of skin to place your Neupro patches, a transition to opioids should very effectively and safely control your RLS (as long as you have a doctor familiar and comfortable with using opioids for treating RLS).
Sent: Saturday, March 25, 2023 1:01 PM
Subject: Pregabalin Sedation
I am 76 years old and have had 24/7 restless leg for 20 years. I have been
taking 60mg of oxycodone daily for the last ten years. Four days ago my doctor
prescribed pregabalin; 75mg doubled each week over four weeks along with the
oxycodone. My problem is sedation/sleepiness. The next day, I am walking around
in a daze, tired and fatigued. I have had this problem with other classes of
restless leg drugs. My question is, will I eventually adjust to the sedation? My
doctor also suggested that he would also consider methadone as an alternative.
Marv K.
A Medical Reply
If the sedation is mile, many patients will adjust to it
after about a month or so. More severe sedation is one of the commonest reasons
that RLS patients cannot take pregabalin. Typically, higher doses are needed to
be effective and that of course increases the risk of sedation.
Methadone may work better at much lower doses.
Sent: Monday, January 30, 2023 1:36 PM
Subject: Rropinirolee
As a doctor why are you recommending this medication please? These drugs are the last resort. The UK are so out of date and now unaware of the after effects. I have spent 16:months getting off this drug and I'm having the worse time ever. Even though I am off it 3 months I'm still experiencing these dreadful side effects.
It's bad enough to have RLS but coming off these meds have increased my discomfort from night time and to become everyday and it becomes much worse during daytime 3am to morning 5pm a total of 14 hours pacing the floor or jogging my legs. I'm not able to rest at all. I'm 80+ and I am exhausted.
Please go to RLS.org to find out the massive number of suffering people who are experiencing the withdrawal of this drug.
Please see the research on these latest findings before
advising doctors and consultants from continuing to prescribed these. There are
better meds are now available, which do not effect adversely
My life and many others who are affected are in desperate despair.
Patricia I.
A Medical Reply
I am not sure where you have read or seen that I recommend dopamine agonist drugs like rropinirolee since I recommend the exact opposite!
I am one of the authors (second author) of the July 2021 Mayo Clinic guidelines/algorithm article that finally took dopamine drugs off first line therapy for RLS.
I almost never use these drugs on a daily basis unless there is absolutely no other choice (and often not even then). I am also one of the authors of the RLS augmentation paper so I strongly advocate against DA drugs.
A Reply from Patricia
Sent: Monday, March 27, 2023 4:21 AM
Subject: RE: ropinirole
Thank you for your interest and reply and
checking this message.
I had been taking your advice from the Mayo
Clinic online some years ago. The last 16 months I had decided to stop taking
ropinirole as it had been ineffective and necessary to increase to get relief.
My GP has prescribed Gabapentin 3 weeks ago
following your advice which I asked for She has prescribed •25mg with no
instructions on when it can be increased and to see her is so difficult to
talk/see her. Far too many patients.1991 I was prescribed for Tramadol for FMA
which helped me to cope, until then I had not been able to walk without a lot of
pain.
I was in hospital, 2 months ago for a clot in
my leg. I had bought Tramadol online for two months before admission which had
allowed me to sleep for the first time in years The consultation informed me
that as I did not want to continue with ropinirole and not wanting to increase
it there is nothing else he could do for me.
The consultant would not allow me to leave
until I had slept, so my husband brought Tramadol from home. After 2 days sleep
I was allowed to go home.
Patricia I.
A Medical Reply
However, most patients will need opioids.
Tramadol is fine if it does the job. More potent ones (methadone, oxycodone,
etc.) can be used on a daily bases in low dose if the tramadol is not effective
enough but you will likely run into problems getting your doctors to prescribe
opioids.
If your PCP is too busy to take care of you, you should find another one.
The guidelines on how to use gabapentin (and related drugs) are very well described in the July 2021 Mayo Clinic article.
Sent: Thursday, March 30, 2023 9:24 AM
Subject: Protracted Benzo withdrawal
I have been weaning my RLS medications for about 14 months with the help of my neurologist at Henry Ford Hospital in Troy, Michigan. I’m currently taking Oxycodone 20 mgs q 6 hrs. (was q 4 hrs) Xanax .5 bid (was 1 mg tid) Lyrica 75 mgs (was 150 bid) My original regime noted lasted for 15 years.
I’m writing because I continue to have many withdrawal symptoms on a daily basis. However our goal is to eliminate Xanax completely. I’m retired but very active in my community and church and spend many hours weekly volunteering. My symptoms are deafening tinnitus at times, dizziness, nausea, anxiety, insomnia, etc. I’ve been pushing through these symptoms and just don’t drive when I decrease another .25 -.5 mgs of Xanax since symptoms worsen. My physician wants me off the Xanax as soon as possible but I just can’t go any faster.
I did stop Xanax completely for 6 weeks last summer but had to be home bound because of my symptoms. Since that was unacceptable to me, my physician decided to let me go back on 1 mg and wean more from there. What is your experience and suggestions on how fast a patient should wean? I’ve had been on Xanax 3 mgs/day for 15 years.
I just started the weaning of Lyrica and have some symptoms, but the majority is Xanax related. Lyrica doesn’t seem to be working anymore.
Kim M.
A Medical Reply
The first issue is do you really need to taper off the Xanax. Although people develop tolerance to this medication, it is a good idea to try to decrease the dose but the benzodiazepines like Xanax can be very difficult for some people to eliminate completely. Sometimes an extremely slow taper by very small amounts may be helpful. However, if you have lowered the dose and you seem to be stable there may not be a need to get off this medication.
The real issue of the need to get off the medication is not really related to restless legs even though you were started on this medication for restless legs. Benzodiazepines do not treat restless legs but rather help people sleep when restless legs are causing sleep disturbance. You might want to discuss this further with your doctor and perhaps even see another doctor who specializes in addiction type medicine to see whether there is any real need to further taper the Xanax or alternative therapies.
Sent: Saturday, April 8, 2023 2:44 PM
Subject: RLS augmentation - seeking your advice and assistance
I have been suffering from RLS for 14 years. I have tried
multiple medications, as I know many folks have, with no relief.
I am currently seeing a neurologist in Nashville, TN who has, over the
past 6 months, prescribed the following in various combinations:
• Requip
• Sinemet
• Zanaflex
• Trileptal
I experienced terrible headaches and diarrhea on DA meds and within a couple of
weeks began having daytime symptoms / augmentation. Gabapentin (and all of its
variations - Horizant, Lyrica, etc.) do not touch my RLS, Klonopin is
ineffective as well, etc.
All of this to say, the only drug I have to fall back on with any relief is the
Requip. I am noticing more symptoms during the day now and fear stopping will be
a terrible process. I cry a lot due to lack of sleep.
Wondering if you might be able to provide some insight or advice that I can
share with my neurologist in terms of next steps for meds.
Kim W.
A Medical Reply
Your neurologist does not appear to be up to date as far as
treating RLS. Our Recent guidelines do not recommend dopamine agonists and
Sinemet for treating RLS (attached). The major reason is that most patient on DA
drugs develop augmentation which has already occurred in your case.
Klonopin and Zanaflex are not RLS treatments.
Since the alpha-2-delta drugs (Horizant, Lyrica) do not help you, the only
choice left are the opioids. We experts use the opioids extensively and if used
properly, they can very safely eliminate your RLS symptoms. However, you will
likely find it very difficult to find a local doctor who will treat your RLS
with opioids.
Sent: Thursday, May 26, 2022 10:05 AM
Subject: Antibiotics and restless legs
I was wondering if you could help educate me on my restless legs. I had
bariatric surgery April of 2021 and 2 days after I started to have symptoms of
restless legs, they steadily got worse and I was diagnosed with restless leg
syndrome, I quit my amitriptyline and hydroxyzine and of course my legs
improved, but I was given gabapentin 300mg three times daily 9a,3p and 9p, to
replace the amitriptyline for my chronic pelvic pain syndrome (pudenal
neuralgia/painful bladder syndrome).
I was doing good only having jittery legs once a week or none at all for a week or two, until I was given an antibiotic for a sinus infection that would not clear up, then my legs and ARMS went nuts!! the worst of it only lasted a few days but I have had symptoms on and off ever since, sometimes even in my trunk, arms and legs.. Why would an antibiotic make my restless legs worse?
I did just recently have my labs done to see if my iron and ferritin were low and my fasting ferritin was 70 my TIBC was 380 UIBC 235 Iron 145 Iron Saturation 38 which are all up from January except my ferritin which is the same. Could this mean that I need an Iron infusion, to get my ferritin up? Would that help me at all? My ENT wants me to take another round of antibiotics and I am very apprehensive due to how it effected me last time. He also wants me take some steroids.
What if any help can you offer me?
Danielle M.
A Medical Reply
I have never heard of any of my RLS patients
having a worsening of their RLS from taking an antibiotic (of course, anything
is possible). It may have been coincidence or you have a very unusual reaction
to antibiotics or more likely the particular antibiotic that you took. Since I
am also a lung specialist, I treat many infections (including sinus infections)
with antibiotics on my RLS patients and as noted above, have never heard of a
worsening of RLS in those patients (or any other reports in the RLS medical
literature).
The steroid treatment also does not affect RLS.
You might benefit from an iron infusion (we like the ferritin above 100) but you
may have difficulty getting it covered by insurance (especially since you have a
very reasonable iron saturation).
Sent: Monday, June 5, 2023 9:44 AM
Subject: Fwd: RLS
I was hoping for your input on my doctor's thoughts about a new try for my RLS.
I have been on 2mg sublingual buprenorphine for a few years but struggle with
side effects of itching and tired/grogginess most of the days now. The
suggestions on the RLS boards have been to try to take less buprenorphine to see
if that helps so I have tried that over the last few months. I have (kind of)
stabilized at half a pill, 1mg, in that I can sleep but still experience RLS at
one point in the night or early morning compared to not really at all at 2mg.
I do feel less tired than at 2 mg but still
struggle waking up and getting through the tiredness to function. I don't know
if it's even an option to be on anything else ever but know that with
pramipexole I didn't experience any of that all-day groggy, I just had augmented
my way up to 3 mg+ per night over the 20+ years of taking it and experienced it
both legs and arms. Obviously that's not an option but I'm always worried about
anything that could potentially mess with the dopamine side of things. These are
my doctor's thoughts about a try:
"OK, here are some thoughts. What if we do an entire kitchen sink approach to
this RLS. We know that it results from too much glutamate and not enough GABA in
brain. Low brain iron increases glutamate
and you are on this already. I believe you do magnesium and a low glutamate diet
already too. Can we add a lot of oral GABA? Also NMDA receptor is what is
stimulated by glutamate, what if we block that receptor with some auvelity? It
is not as potent as esketamine but it does seem to work well.
Erin E.
A Medical Reply
Those are some very interesting thoughts but
unfortunately, they are very unlikely to help your restless legs. Products that
contain bupropion such as Wellbutrin often do not worsen restless legs and may
help restless legs mildly but I doubt they would do much else and would likely
not help you decrease your generic Suboxone.
Adding magnesium has never been proven to be helpful and the best way to lower
glutamate is to use a drug such as gabapentin or pregabalin. Eating a diet
lowering glutamate will be very unlikely to provide any restless leg benefits.
What I sometimes do is add a low-dose to medium dose of either gabapentin or
even better yet Lyrica/generic pregabalin near bedtime and that may allow me to
decrease the dose of any opioid or partial opioid like generic Suboxone for
treating my patients.
Sent: Wednesday, June 7, 2023 10:33 AM
Subject: Iron/Restless Leg Syndrome
We have communicated in the past, but as a reminder, I am a 78 year old female,
suffering from restless leg syndrome for most of my adult life. I've gone from
.25mg of pramipexole twice a day to .125mg of pramipexole twice a day. I also
take approximately 600mg of gabapentin along with the second pramipexole.
Usually I sleep pretty good, but my evenings and sometimes afternoons are
uncomfortable. At my age, one wants to rest later in the day. I've recently
begun iron supplements, 325 mg Ferrous Sulfate, and have raised my ferritin from
26 to 107.
My family doctor now wants me to take 2 tablets a day and I'm taking them both at night before bed and started that about 3 nights ago. Last night I was comfortable until I took the iron and then had a horrendous 2 hours in bed with jerking legs. Have you ever heard of iron making restless legs worse?
I have never read anything to suggest that, but I sure wondered last night. Perhaps both pills at one time isn't a good idea. I count my blessings that I'm much better off than many.
Patricia N.
A Medical Reply
Oral iron usually is not helpful for treating
RLS as it does not typically get enough iron into the brain. When I really want
to improve RLS symptoms, I give an IV infusion of iron.
Furthermore, taking more than one iron tablet daily decreases iron absorption so
is self-defeating. We suggest taking one iron tablet in the evening once a day
or even once every other day (although the odds are that will not help much
anyway). There is no reason that oral iron should acutely worsen your RLS
symptoms. That may have been coincidental.
Sent: Friday, July 21, 2023 8:28 AM
Subject: Pre-existing RLS and now PSP (Progressive Supranuclear Palsy)
My 90-year old mother has had persistent RLS (untreated) for years, and now with PSP, her RLS is worse. As her caregiver, I have watched her movements at night on the parent cam, and she is very sleep deprived. She has had a number of falls, yet her providers all offer gabapentin without any options or discussion. I have several questions:
1. What is the best way to respectfully appeal to these providers (NP, PCP, Movement disorders doctor) about a different medication?
2. Which medication/s could we ask for, especially considering she is in palliative care?
Years ago she used to find relief from RLS symptoms when she took opioids after her various surgeries and actually augmented on Tramadol. At this point in life she is prone to falling, and afraid of what she thinks are "mind-altering" medications.
3. Someone has suggested Trazodone. Would that be appropriate in this situation?
Jeanne W.
A Medical Reply
You are asking some tough questions given your mother’s age and issues. We normally recommend starting treatment with gabapentin (see the attached guideline article). However, the major side effect of gabapentin is sedation/gait and balance issues which may be contributing to your mother’s falls. If that is the case, then it should be stopped and changed to another medication.
I normally do not like to use dopamine drugs (pramipexole, ropinirole or the Neupro patch) as they can cause worsening of RLS with time (usually months to years). In your mother’s case at age 90, that may or may not be an issue. If you do want to use a dopamine drug, I would recommend starting at ½ or the lowest dose (1/2 or .125 for pramipexole or1/2 or .25 of ropinirole). If that is not sufficient, you can increase by ½ tablets until the RLS is relieved. The medication is generally taken 1-3 hours before symptoms occur.
Another very good choice would be the tramadol It works very well for RLS and usually does not cause any sedation (sometimes may even cause insomnia).
Trazodone is an antidepressant that is used for its sedative side effects to help people sleep and does not worsen RLS but it has a very long duration of action and often causes next day sedation. It does not help RLS symptoms but just helps people sleep. I would only suggest using this drug as a very last resort if all the better treatments fail.
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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 124.
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