Sent: Sunday, December 15, 2019 10:00 AM
Subject: RE: Iron infusion for RLS
My husband started taking Bupropion/Wellbutrin because he was so depressed with
incessant RLS. I told his doctor he needed Wellbutrin (150 mg) as I had read in
your correspondence with sufferers. I am not sure what has happened but since he
started it two days ago, he has had a remarkable reduction of symptoms! I am
pretty positive this change is due to the Wellbutrin. Have you heard of this? He
has tried everything over the past 8 years…he is now on 10 m of methadone per
day after having tried everything else with lots of augmentation or with no
efficacy.
My questions:
#1 Have you heard of Wellbutrin helping with RLS
#2 Could this be long-lasting or will its efficacy diminish?
#3 He is a “super-sensitive” to medication. Is this medicine hard to
tolerate….So far, he has tolerated it very well.
Lucy G.
A Medical Reply
Wellbutrin has some dopaminergic activity so it has been known
to improve RLS symptoms. It should be fairly long acting.
If there are issues tolerating Wellbutrin, it should occur within the first week
or so. The dose can be increased if necessary to 300 mg.
Sent: Thursday, December 26, 2019 10:06 AM
Subject: RLS Advice
I have been struggling with nasty cases of idiopathic restless leg syndrome and
periodic limb movement disorder, and was hoping for a bit of advice from an
expert. I've had two sleep specialist neurologists tell me there is nothing more
than can do for me, and from everything I read that seems to be true.
Without medication, I sleep roughly every other night. I currently take
Gabapentin and Clonazepam but they get less and less effective over time, and
haven't done a great job of controlling my symptoms even at their best.
Unfortunately, despite their insufficiency they're the best solution I can find,
and I believe I've tried everything else currently available.
Dopamine agonists (Pramipexole specifically) worked well for years until
augmentation took hold. Since then I've tried Lyrica, Oxycodone, Neupro,
Alprazolam, Levetiracetam, Topiramate, Clonidine, Carbidopa-Levodopa, and
Trazodone, mixes of these medications, as well as various exercise, diet, and
supplement regiments. None of these have provided me any lasting relief.
Am I stuck with where I'm at? Is there anything else worth trying, or any new
medications in the pipeline? Would it be worth it to make the trek to a quality
care center, or will that just result in another doctor telling me this is the
best medical science currently has to offer?
My iron levels and other relevant blood work has all come back normal, as well
as an EEG and an MRI.
Matthew W.
A Medical Reply
Typically, we would recommend trying methadone at adequate doses
(generally up to 15-20 mg) should help you as it is successful in over 90% of
cases similar to yours.
Clonazepam causes daytime sedation due to its very long half-life and tolerance
occurs frequently. Therefore, once your RLS is better controlled you should
consider weaning slowly off this medications.
Sent: Tuesday, January 7, 2020 5:10 PM
Subject: Transcranial Magnetic Stimulation
I am taking Neupro and Belbuca for RLS which are working for the most part.
However, I am also taking Wellbutrin XL and Rexulti for depression. These
medications are not working. My counselor has suggested TMS (transcranial
magnetic stimulation). My question is: do you know of any adverse effects on RLS
in those who use TMS?
Sherry G.
A Medical Reply
To the best of our knowledge, TMS should not worsen RLS.
Sent: Wednesday, January 8, 2020 2:36 PM
Subject: RLS
I had been taking Pramipexole 0.125mg for the last eight months. I felt I was beginning to augment so I cut down the half of the dosage and asked my neurologist to add Pregabalin, which he did at 75mg. Thus, my new regime of 0.0625 mg pramipexole and 75 mg Pregabalin worked fine for some 2 months with just one, 10-15 minute RLS every night.
However, I am now finding myself up for more than 2 hours every night. My doctor will not give me opioid on a regular basis. He has given me tramadol 50 mg on a SOS basis but that gives me relief. I am afraid that I will have to keep increasing the Pregabalin dose every few months.
What do you advise me to do? Have you seen people stay on a certain Pregabalin dosage for more than half a year or so ?
Pranjal S.
A Medical Reply
You are actually on a very low dose of pregabalin and most people would need a higher dose. It is likely that your low dose is only borderline helpful for treating her restless legs and therefore only helps you intermittently. My advice would be to increase the pregabalin to 150 mg and see if that is helpful. Typically, once you find the correct dose you should not have much problems with having to increase the dose.
Sent: Wednesday, January 8, 2020 4:14 PM
Subject: Possible RLS in our 5 year old daughter
I really hope you don’t mind me contacting you but I have a 5 year old daughter
who I strongly suspect is suffering from RLS and we’re not quite sure where to
go from this point. I was researching to try and figure out if this could be the
cause of her symptoms and was advised that you would be a good person to contact
as the expert in this field. We live in England but will have a lengthy wait to
see a neurologist so after learning there may be some things we could be doing
in the meantime I felt compelled to write and ask your advice.
All the GPs I have mentioned RLS to have seemed to discount it due to her age and they are now putting it down to psychogenic itching but so much of what she is experiencing seems to me to be very consistent with RLS. She starts getting ‘itchy’ as she calls it while she is lying in bed which means she can’t get off to sleep and then wakes up in the night most nights screaming/crying with it. She used to complain about it predominately in her feet but now gets it all over her body and this has been going on intermittently for the last two years. There has never been any physical sign of a rash, spots or anything on her skin that would cause an itch. She rubs herself, kicks, writhes and throws herself around as if trying to get something off her rather than actual scratching and has described it as like having spiders under her skin. She gets it mostly in bed at night whilst trying to get to sleep and then waking at least once in the night from it. We can observe it waking her up, she starts kicking and jerking around in her sleep followed by groaning and then crying as she wakes up and then writhes around on the bed. To try and describe what we see, it’s like she has insects landing on her and she’s trying to shake her arms, legs, everything to get them off. Once awake she can’t lie back down and she rolls around on the bed going from crying to screaming saying she’s itchy.
It seems to go in waves and cycles of severity, in a mild phase then sometimes a trip to the toilet will bring her out of it and she’ll be able to go back to sleep, at its worst she won’t be able to stand on the floor as her feet are too itchy, all we’ll be able to do is carry her while she screams until we can somehow distract her out of it. If she stays in bed it just gets worse and worse and she could be awake crying for hours until she gets so tired she falls asleep again. Usually once she is out of bed and we’ve got her to walk around a bit we can try and distract her from it more easily, sometimes a drink, snack or a story works. We have tried to resist using screens as a distraction but when it is particularly bad sometimes it’s the only thing that distract her. Sometimes a calm nature documentary on the lowest brightness and volume on my phone will be just enough distraction to send her back to sleep, other times it needs to be more stimulating and then we start to bring it down to something that will allow her to go back to sleep again. She also gets the same itching in the car and occasionally at other times during the day but nothing like the night times. She was itchy during the day for 3 days in a row after we were prescribed Phenergan to help her sleep so we stopped giving it to her, I then googled and found that it is a named irritant in RLS.
So much of what we’ve read about RLS sounds consistent, but there are a few things which had put me off the scent so to speak for a while. The first is that it isn’t confined to her legs, she rubs her hands together complaining that under her nails are itchy, similar with her feet and toe nails, she feels it a lot on her back and neck and if you ask her where she’s itchy she always says everywhere. The second thing is that lots of other RLS suffers seem to describe an instant relief from the discomfort with movement/massage. It is true for her that getting her up and moving eases it after a little while but I wouldn’t describe it as instant. She doesn’t want to be touched at all while she’s experiencing it except sometimes to be picked up out of bed and carried but she gets very irritated if we try to touch her otherwise (this is not like her normally). She does ask us to scratch her back but then also gets annoyed when we do and she definitely wouldn’t tolerate a massage during it. We have had blood tests investigating various things including liver function which all came back normal but her iron levels were on the low side at 18. She has been taking an iron supplement now for a few weeks and it is now at 35.
’m sorry for this long e-mail but I wanted to ask firstly if you think this does sound like possible RLS or at least if you think it would be worth investigating further? I wasn’t sure at first but have now read so much about it and other people’s experiences of it that I have realized it doesn’t necessarily always strictly follow the mainstream internet definitions. I also came across Restless Arm Syndrome the other day and it almost seems like it might be a combination of the two.
We are desperate to try and bring her some relief, she is naturally a bright and bubbly soul but we and others have noticed that she’s not herself at the moment as she must be so tired. I wondered if you might be able to recommend any first steps while we are waiting to be seen. We have started a food diary in the last few days and although we eat relatively healthily I’ve now realize that sugar, chocolate, caffeine and many other hidden ingredients can be triggers so we are planning to go back to basics with ingredients and record the patterns of her symptoms. Are there any supplements apart from the iron that you could recommend we start giving her? At the moment all she is taking is the iron syrup Sytron 3 times a day and a Centrum for kids multi vitamin. Also I am going to go to our GP and ask to be referred to a neurologist but the thing I’m worried about is waiting for months to see someone who doesn’t have enough experience of RLS especially in children.
I was wondering if you had a colleague here in London you could
recommend we ask to be referred to? I’m not sure whether it would be best to ask
to be seen at Great Ormond Street children’s hospital or whether there might be
another doctor who is more knowledgeable in RLS. Again sorry for this lengthy
message, we would be incredibly grateful for any thoughts you have.
Irenie B.
A Medical Reply
It does sound as if your daughter has RLS. I can’t say for sure
without seeing her myself but I suspect the odds are very high for RLS. RLS is
actually much more common in children than most physicians realize.
Epidemiological studies have found up to 2% of children having RLS. Most
physicians that you see (including most neurologists) will likely not be very
proficient on diagnosing and treating RLS in children (and also not so good on
adults either). There is literature available from the RLS Foundation (www.rls.org)
that might be helpful for both you and your doctors.
If she does have RLS, we typically recommend starting with very low dose
gabapentin (50-100 mg) in the evening. Getting iron levels as high as possible
can also be very helpful.
Sent: Wednesday, January 8, 2020 7:45 PM
Subject: Restless Legs
Could you help me with my Restless Legs please. I am a 64 year old female living
in England. I have suffered with RLS for as long as I can remember, suffering
for years before getting any help. My doctor put me on Ropinirole about 10 years
ago, at first it was a life-saver but that was before I developed a gambling
addiction and started augmentation. I eventually weened myself of Ropinirole
about 3 months ago with the help from Co Codamol. I carried on taking Co Codamol
for a few weeks before being prescribed Pregabalin.
I suffered quite bad side effects from Pregabalin so stopped
taking it. A few weeks after this I was prescribed Pramipexole but I did not
want to take another Dopamine Agonist because of my gambling addiction. Since
then I have been relying on Co Codamol to help me with my sleeping and pain,
unfortunately this does not work very well and I have not slept well for months,
I usually get 2-3 hours a night. My doctor prescribed some sleeping tablets for
me but I had one of the worst nights ever with terrible pain in my legs after
taking it. For the last few weeks I have just been taking Co Codamol but it’s
giving me very little relief from RLS.
The lack of sleep is really having a big impact on my life and I do not know
where to go from here. My legs are not too bad during the day but really bad at
night. I booked a flight to Australia a while back but I am dreading it, I
really do not know how I am going to cope. I have 5 weeks before I go to try and
sort out something that is going to help me.
I would be so grateful if you could find the time to help me with this problem.
I do not think we have a doctor like yourself in England that is so
knowledgeable of RLS.
Pat P.
A Medical Reply
The problem is that the Co-Codamol is a very weak opioid
(codeine is way at the bottom of the list of opioids for potency). You would do
so much better with a more potent opioid like methadone or oxycodone which may
be very difficult to get in the UK since doctors do not like to prescribe potent
opioids in general and especially for RLS.
In addition, the acetaminophen part of Co-Codamol does not help RLS symptoms so
exposes you to some risk with long term use (kidney and liver problems) without
any possible benefit.
Sent: Friday, January 10, 2020 2:06 AM
Subject: RLS
Hello Doctor. I am currently on 0.125mg dosage of Mirapex which is not working
so well now. I am being told to switch to Ropark (ropinirole) but on a similar
low dosage. Does 0.25mg of Ropark have similar potency to that of 0.125mg of
Mirapex?
Heather
A Medical Reply
The Mirapex .125 mg is at least as potent as ropinirole .25 mg (Ropark)
but more likely more like .5 mg or ropinirole.
However, you are asking the wrong question. You are developing augmentation from
Mirapex which is a worsening of RLS from being on a dopamine drug like Mirapex.
The best treatment is to get off the dopamine drug and change therapy. Changing
to another dopamine drug will just perpetuate this augmentation process so is
definitely not recommended.
A Reply from Heather
Sent: Tuesday, February 18, 2020 1:22 PM
Subject: DA Withdrawal
Is it safe to take 100mg of Tramadol during the withdrawal period? My doctor has
put me on 50mg which I can increase as per my RLS. I have been taking 150mg of
Pregabalin for 1.5 months now.
Heather M.
A Medical Reply
It is safe but tramadol is not a very potent opioid. It might not take care of all your RLS withdrawal from dopamine agonist symptoms.
A Reply from Heather
Sent: Monday, March 9, 2020 7:48 AM
Subject: Re: DA Withdrawal
Clearly, Tramadol did not prove strong enough. I decided that this would be a
drug holiday since I have to be somewhere.
However, after 3 weeks, I resumed the DA. Instead of Pramipexole (0.0625mg/0.125mg), I took Requip (0.25mg) along with Tramadol 50mg and Pregabalin 150mg. I had reasonable relief at night. However, I have only taken the Requip for 2 days and I have symptoms in the afternoon. I did not have any symptoms in the afternoon during the 3 weeks I was on a drug holiday.
What should I do for the time being?
Heather
A Medical Reply
The correct treatment would be to get off all dopamine agonists (Requip and Mirapex) by using a potent opioid It may be difficult to get your doctor to prescribe an opioid. I have attached our augmentation article to help you and your doctor to treat you appropriately.
Sent: Sunday, January 12, 2020 8:35 AM
Subject: Treatment advice
I am 77 year old female. I was in touch with you some months ago and since then
I have been taking slow release oxycodone 5 mg. In the morning and 10 mg. In the
evening. You had suggested an increase but unfortunately my doctor refused this.
I am getting breakthrough of symptoms. The tablets are supposed to last 12 hours
but I have found its more like 8 at the most.
Unfortunately I have been experiencing a degree of depression and awaken with fairly black thoughts. This improves when I take the 5 mg. I have also suffered a very dry, sore mouth and dry eyes on this treatment and it is causing a bit of brain fog.
I was unable to tolerate gabapentin which caused marked side effects and also triggered migraine with aura for the first time in my life. Pregabalin caused side effects including swelling of hands and feet. I now note Pregabalin is linked to loss of peripheral vision and as I have wet macular degeneration in both eyes this drug might not be a good idea.
I used to take codeine 30 mg. Each evening for several years and
then it did not work so well. I was then in touch with you and started the
oxycodone, but with the problems I am having I wonder what you would think of
trying codeine in a higher dose. I did not seem to have any side effects while
on codeine. I know it is a much milder opiate.
My serum iron was 14.9 (10 – 30) and ferritin 189 (13 – 300) some months ago. I
am healthy otherwise and take only 75 mg. aspirin to prevent migraine aura.
I would very much appreciate your advice. I have persevered, hoping things would improve. I am quite upset and don’t know what to do for the best.
Barbara K.
A Medical Reply
The problem with slow release oxycodone (especially for the
brand OxyContin made by Purdue) is that it only lasts 8-10 hours which may
explain your lack of coverage of your RLS symptoms. Normally, I would suggest
that you increase your dose (you are still well within the safety zone for
tolerance and dependence) but you state that you are experiencing side effects
from the medication that would likely increase with higher doses.
The options would be to change to another opioid (methadone, hydromorphone,
morphine sulphate, etc.) but these other opioids may or may not cause similar
side effects or may not work as well (likely the methadone would work much
better).
However, the best choice would be to change to Belbuca which is a partial opioid
drug which tends to have very few side effects and is quite effective. However,
most doctors are not very familiar with this drug (which is in a safer schedule
3 category and can be written with refills) and it tends to be very expensive
(you will have to check your insurance coverage for the drug).
You would likely benefit from an iron infusion but it may be difficult to get
insurance coverage for this procedure given your iron and ferritin levels.
A Reply from Barbara
Sent: Sunday, January 12, 2020 9:37 AM
Subject: RE: Treatment advice
Thank you for your prompt response and I note all your suggestions. I live in
the UK and methadone would not be prescribed here at all except for drug abuse.
I note your suggestion of Belbuca and I can talk to my doctor regarding this.
However, he is not too keen on me taking oxycodone so I doubt if his response
would be favorable. If he did agree what dosage would you suggest.
I did ask what you thought of me trying codeine again but in
higher dosage as it did not seem to cause problems. Again if you were in
agreement what sort of dosage would I require.
Barbara K.
A Medical Reply
Codeine did not cause side effects since it is a very weak opioid. It is doubtful that you would get RLS relief from this drug at even higher doses. Furthermore, it is also possible that you might experience similar opioid side effects with the codeine at higher doses.
A Reply from Barbara
Sent: Friday, August 7, 2020 5:55 AM
Subject: BUPRENORPHINE PATCHES
I have been in touch with you before for advice on my severe restless legs. I
was taking oxycodone slow release 15 mg in the morning and 10 mg. in the evening
for about two years. However, earlier this year this treatment failed to give
much relief.
You had suggested Belbuca but my doctor completely refused this.
Early in June I approached him again and he agreed to
buprenorphine patches with reluctance. He did not know what dosage to prescribe
and ended up giving me the 20 mcg per hour patch. For two weeks I had a
marvelous response – no RLS and about five hours sleep nightly.
The doctor wanted me to try lower dosage if possible and after two weeks I went
down to the l5 patch and after another two weeks to 10 mcg. By this time I had
started having severe mood swings and at first put this down to changing too
rapidly.
I went back to the l5 patch but mood swings are just as bad after two weeks. In fact I have never felt so bad in my life – so agitated, apprehensive, shaking, weeping, etc. It has been a nightmare. The sleep pattern is more broken again but the RLS is only very occasional and very slight – just a few minutes if I get up and walk.
I have not been able to speak to a doctor as both have been on
holiday. It was suggested to me by a friend that what I was experiencing was
withdrawal symptoms and that perhaps 20 mcg was the best dose for me. I wonder
if you could advise me on what to do now. I would say that I was started on the
patch the day after stopping oxycodone.
Barbara K.
A Medical Reply
I do not use or recommend the buprenorphine patches (Butrans) as
this is a very long acting medication and cannot be adjusted to accommodate the
diurnal variation of RLS (it is usually worse in the evening so a higher dose
can be given at that time with a lower dose earlier in the day).
My recommendation was for Belbuca which is a film (not a patch) that is placed
on the inside of the cheek. Each film lasts 12 hours.
I therefore cannot really give you any advice since I have no experience with
Butrans and it is quite different from Belbuca due to extremely slow release 7
day action.
Sent: Friday, January 17, 2020 3:15 AM
Subject: sublingual buprenorphine?
Is buprenorphine a medicine you have tried for restless legs syndrome? I was
considering trying it because I know someone who has had much success with it,
but I wanted to know what you thought first.
Lana E.
A Medical Reply
I am now using buprenorphine as one of my favorite drugs of choice to treat RLS that is refractory to gabapentin like drugs and for dopamine induced augmentation. The preferred form of this drug is Belbuca as the doses are much lower than other forms of this drug but yet very effective. The only concern is that Belbuca may be quite expensive if not covered by insurance.
A Reply from Lana
Sent: Saturday, February 8, 2020 8:03 PM
Subject: sublingual buprenorphine?
I am currently taking one to two milligrams of sublingual buprenorphine two to
three times a day no sooner than six hours apart. I have not been on it very
long, but I am also taking two tablets of fifty milligram tramadol twice a day
and six hundred milligrams of Horizant twice a day, both of which I was taking
before starting on the sublingual buprenorphine.
The buprenorphine seems to be working well for my restless leg syndrome, and before I started taking the buprenorphine, the tramadol and Horizant had lost their effectiveness on decreasing my restless leg syndrome symptoms. I wanted to ask you if you know how I can stop taking the tramadol and Horizant without it causing my restless leg syndrome to act up. I do not know whether I should just stop taking both immediately or if I need to wean off of one or both slowly.
Lana
A Medical Reply
It is likely that the buprenorphine may be blocking the effects
of tramadol so stopping it may not make much of a difference but only a trial of
stopping the tramadol will let you know for sure.
It is also likely that if you stop the Horizant, you will need more of the
buprenorphine. Therefore, it may be reasonable to stay on the Horizant. You
could try stopping one of the Horizant tablets to see whether this is correct or
not (well after stopping the tramadol trial).
Sent: Thursday, January 23, 2020 6:07 AM
Subject: Decongestants
Are there any RLS friendly Decongestants. I was told the below can make RLS
worse? Sinutab/Sudafed (pseudoephedrine)
Adam
A Medical Reply
Decongestants are fine. It is the sedating antihistamines (like Benadryl) typically attached to the decongestants that worsen RLS.
Sent: Sunday, January 26, 2020 2:32 PM
Subject: RLS
I have used Requip 2mg for several years with success and recently my RLS
started acting up horrifically so my Neurologist put me on Requip ER 2mg, 1 in
am and 2 at night and I still have horrible RLS so much that I have to get up
and move until I'm exhausted and sometimes that doesn't last long. I
have sleep apnea and went for follow up and I told the Dr. about my legs and he put me on Horizant 300mg once a day. The first time I took it, it seemed like it was going to help but my RLS was right back to miserable. How long does it take for Horizant to help? And can I take Requip as well?
Jean D.
A Medical Reply
The issue is that you have developed augmentation (a worsening
of RLS from taking a dopamine agonist drug like Requip) which will get worse as
you increase the dose of Requip (with a temporary improvement if you are lucky
before the worsening occurs). Therefore, your neurologist’s treatment is the
exact opposite of what should be done (but this mistake is made by the majority
of neurologists).
The Horizant may help a little but with augmentation, the real solution is to
get off the Requip. If not done correctly, that can be quite difficult.
Attached is an article that we published in 2016 on how to treat augmentation.
It may help your local doctors treat you properly.
Sent: Sunday, February 16, 2020 7:40 PM
Subject: Help For Restless Leg
Up until September 2019 I had been taking Methadone for approximately 15 years
due to a thoracic back injury. After many injections, procedures and adding
exercise I was able to stop this medication. While taking the Methadone I
noticed very few symptoms of restless leg, maybe in the morning once every six
months or so. After stopping the Methadone my symptoms have increased to daily,
sometimes in my arms and torso.
My father has had restless leg for approximately 10 years now and I have heard it can be hereditary. He takes Requip at night and Tramadol twice daily. I really believe at this point I started experiencing it years ago but the Methadone was keeping it under control without me being aware of the condition. It is now in full force. I have seen my general practitioner several times for it with no progress.
He started me on Klonopin since I was always anxious due to the tingling, burning feeling all the time. Klonopin made me feel so bad and fatigued that I couldn't take it regularly, and it didn't help my legs (actually made them worse). Next we tried Requip and then Mirapex which both made my throat swell. The last visit we started Gabapentin which only made me have chronic diarrhea and loss of appetite.
I have a visit at the end of March to see a neurologist, but I
am not real positive of the outcome at this point.
What would you recommend I try next? I would like to have you're thoughts so
when I see the neurologist we could discuss. If I didn't live in Tennessee I
would love to get in and see you.
Richard H.
A Medical Reply
At this point, opioids are your best option. At the doses used
to treat RLS, they are very safe and effective. Methadone is one of the better
choices and since you have been on it in the past, that would likely be the best
choice.
It will be very tough to convince your local experts (neurologists or sleep
specialists) to prescribe opioids for RLS. This mostly due to a lack of
knowledge about this treatment and the current opioid epidemic climate.
Attached is a copy of our opioid for RLS article which we published last year.
It may be somewhat helpful but the odds are significantly low that they will
prescribe opioids to treat your RLS.
Sent: Wednesday, February 19, 2020 5:16 PM
Subject: Question for RLS
I'm wondering if you have seen any evidence to suggest that iron infusions can
alleviate PLMD in patients with moderate PLMD, and no RLS?
Also, I find I’m hyperaware of my PLMD, and consequently it causes wake-ups
throughout the night; do you know of any medications that address the
hyperawareness?
Amy N.
A Medical Reply
We do not have a lot of data about the effect of iron on PLMD. I
suspect that there may be some benefit but we really lack knowledge of this
issue.
The best treatment for arousals associated with PLM is an alpha-2-delta drug
like gabapentin or Lyrica.
Sent: Friday, February 21, 2020 7:39 PM
Subject: RE: Where to now?
I have severe periodic limb movement disorder that is controlled in the main
with pregabalin (a dose of between 250mg and 300mg nightly). I find the side
effects to be problematic which is why I’m looking for an alternative.
I had an iron infusion recently which elevated my ferritin levels to 570ug/L
however still experience some limb movement (at least when I’m awake).
I have also used pramipexole, melatonin and benzodiazepines in
the past.
Recently I tried oxycodone/naloxone 2.5/1.25mg on two occasions however
encountered insomnia and heart palpitations which made me nervous of continuing
it.
I also tried Tramadol 50 mg on one occasion however experience a
night of complete wakefulness on it.
My question for you now is whether buprenorphine is worthwhile considering?
Anna O.
Australia
A Medical Reply
Buprenorphine tends to work very well for RLS. However, I now use (almost exclusively) Belbuca which is a very low dose form of buprenorphine (I am not sure that it is available in Australia). The other forms of buprenorphine start at 2 mg (2000 mcg) which is much higher than the 75 mcg dose of Belbuca. However, in general, the side effect profile of buprenorphine is markedly less than the typical opioids like oxycodone.
Sent: Monday, March 9, 2020 2:06 PM
Subject: OK to take Tramadol during no-methadone transition to Belbuca?
My sleep doctor has stretched out my weaning-off-methadone torture to a full six
months, so my 48 hours entirely off methadone won't start until a few days after
April 7. I'll be having thumb joint surgery March 26 (essentially a joint
replacement).
Tramadol will be prescribed for the pain.
Should I do without Tramadol during my two days between methadone and Belbuca? I
don't want to interfere with this transition after waiting so long!
Sharon S.
A Medical Reply
It is not clear why anyone would want to wean an RLS patient off
methadone prior to surgery. It just causes needless suffering without serving
any useful purpose.
We normally just continue the methadone then use whatever is needed for
post-operative pain for a few days then go back to the methadone. That is the
way I do it so I cannot really answer your question.
A Reply from Sharon
Sun, Apr 19, 2020 at 2:27 AM :
In absolute desperation due to wild jerking all night, a few
weeks ago I visited a substance abuse clinic, persuaded them that I'm a
methadone addict, and begged them to prescribe Suboxone. (I'm about to turn 73
and have never used any illicit drug apart from half a dozen marijuana parties
in 1966).
They were so kind. I regret deceiving them! If I return, claiming relapse, they
might well prescribe Suboxone. My current current mishmash of meds is having no
effect. My legs and arms are flailing as I type.
Every buprenorphine doc in Maine has rejected me the instant I mentioned RLS. MY
PCP has no license to prescribe it.
Apart from the sad ethical questions, would the naloxone in Suboxone reduce the
methadone's effectiveness? The methadone dose that allayed my RLS was 30 mg/.day
(10 am, 20 pm).
Flailing about and trying to stay hopeful,
Sharon
A Medical Reply
Suboxone has been used by other experts but I prefer Belbuca. Suboxone can work
well for RLS but the doses are much higher. He used to have patients cut the 2
mg film in 1/4 .
However, no special license is needed for Belbuca since it is only approved for
pain (and that should include RLS pain) and not for opioid addiction. The issue
is most likely ignorance of the new drug Belbuca as I have found many
neurologists and sleep doctors think that it is used for opioid addiction and
not for pain.
Sent: Sunday, March 15, 2020 8:55 PM
Subject: RLS Desperation
Even though I am writing from well outside your area, ie Sydney, Australia, I am
hoping that you can offer some advice as I am chronically sleep deprived and
getting truly desperate.
I am a 72 year old woman who has for many years suffered from Peripheral
Neuropathy which has developed into RLS. I was coping OK on 300mg Pregabalin but
this seems to have lost some of its effectiveness over the last few months. I am
not independently mobile to be able to consult a specialist, and my GP obviously
does not have specialist knowledge of this area.
I would appreciate any suggestions as to medication adjustments which might
help. I was wondering, for example, if increasing the dosage of Pregabalin would
be worth trying or if you would recommend something else.
Patricia Q.
A Medical Reply
You are already on a fairly high dose of pregabalin at 300 mg.
It can be increased to 450 mg (for one daily dose only) but it is more likely
that you would experience side effects rather than benefit (although only trial
and error can really determine this).
The best treatment would be to add a very small dose of an opioid like oxycodone
or methadone near bedtime but it is very unlikely that you would get that from a
general doctor (or likely even a specialist in Australia). An alternate choice
would be to keep your dose of pregabalin the same but add a small dose of the
Neupro patch.
Sent: Friday, April 3, 2020 11:17 PM
Subject: RLS
My husband has RLS and was given Mirapex to take before bed. 2 pills before bedtime. Can't remember the dose. I apologize. The last few weeks that he has been taking it, it has caused terrible nausea and vomiting every night. Should he stop taking it all together? Is there another medication he should be taking?
Shannon S.
A Medical Reply
The nausea tends to be dose related (so the actual dose is important and many doctors start at too high a dose). However, the nausea and vomiting may be a good thing in that it will get him off the Mirapex. If he does stop the drug, he will immediately experience a worsening of his RLS symptoms. Other drugs (such as gabapentin, Horizant or Lyrica) are better choices.
Sent: Thursday, April 9, 2020 12:32 PM
Subject: Perampanel
Good afternoon! Do you know anything about this medicine being used for restless
legs syndrome and, if so, do you know if it can cause augmentation?
Lana E.
A Medical Reply
This is an antiseizure drug that has only been tested in one small study in 2017
that showed that 12 of 20 subjects with RLS improved with the drug. We are
waiting for larger studies to confirm this benefit for RLS.
The drug is not a dopamine drug so should not cause augmentation.
Sent: Sunday, April 19, 2020 8:39 AM
Subject: Depression after eliminating DAs
You have helped me a lot in the past, for which I am very grateful. As of now,
my fairly serious 13-year-long case of RLS is very well controlled using a
combination of 12.5 mg methadone, iron supplements (following 2 infusions of
Injectafer last year), and 900 mg gabapentin (which may no longer be necessary).
I was on the various DAs for the first 12 years, and finally eliminated the last
one, Neupro, in February 2019 after augmenting on them all. That's when I
started the methadone, my life-saver.
But since then, I have had numerous problems. I lost 40 lbs, with appetite and
libido loss. And worse, I have been struggling with depression off and on since
then, plus some occasional anxiety. I didn't recognize it for what it was until
recently, because I never had it before then, and didn't know the symptoms. (I
kept thinking it must be some physical ailment.) But I've been feeling
increasingly bad, confused, and sometimes anxious over the past year, so I
finally discussed with my PCP last week.
He said it's definitely depression, with some anxiety. He prescribed Zoloft,
which I just started yesterday at 25 mg/day (up to 50 after 1 week). I know
SSRIs may aggravate RLS symptoms, but I am willing to try it, since it could
help with both depression and anxiety.
I now believe that the depression and anxiety and perhaps the weight loss, too,
were almost certainly caused by my having eliminated all DAs over a year ago.
All that started right around then.
So, my questions:
- Would you agree with that assessment?
- Could my brain have lost too many of its dopamine receptors, or lost the ability to generate enough endogenous dopamine, from all those years on DAs (dosage was many times higher than current recommendations)?
- If so, will I ever get back to normal dopamine levels?
- And if my brain won't ever recover that, should I consider taking Wellbutrin (a dopamine reuptake inhibitor) to help build up my dopamine levels again? Or would that likely trigger augmentation?
- Am I asking for trouble in using Zoloft? I'm hoping the
methadone may be sufficient to counteract any RLS aggravation from that, if any.
Do you think it would? Is it safe to continue with Zoloft?
Peter W.
A Medical Reply
I think that it is less likely that your depression has anything
to do with your previous dopamine drug intake. For the most part, the problems
that occur with dopamine drugs only occur while taking them (and in the case of
augmentation, several weeks after stopping them) and resolve with stopping them.
One can never say for sure, but I suspect your depression is not related to your
use of dopamine drugs.
Most likely, the depression is either not related to anything (just something
that can come on for reasons that we may never be able to figure out). However,
it is also quite possible that it may be caused by the drugs you are taking.
That would include gabapentin and methadone since both are known to cause
depression and therefore the combination is even more likely to be a cause of
depression.
Zoloft may help depression but can worsen RLS. The methadone may be sufficient
to prevent this worsening (or an increased dose may be needed). Of course, if
the methadone is causing depression, this may not be the best treatment.
Wellbutrin has the advantage of improving depression without worsening RLS. The
fact that it might increase dopamine levels would have little to do with it
helping your depression.
A Reply from Peter
Sent: Monday, May 11, 2020 11:36 AM
Subject: Transitioning from methadone to buprenorphine
Let me start by saying how grateful I am for all your advice
with regard to Buprenorphine. I am transitioning from 12.5 mg methadone, and
just got a 2 mg prescription for Subutex. I do need to ask one more question, if
I may. I would be happy to pay you for your time, since you have already been so
generous with your free advice, and I don't want to abuse your kindness.
I need to know how to safely make the transition from methadone to Subutex. I
have read that buprenorphine can precipitate withdrawal from other opioids. I
thought I'd do it in one day: take my last 12.5 mg methadone dose at 3 PM, then
take 1 or 2 mg Subutex at 6 PM or later the following day. Would that be safe,
or would I be risking withdrawal?
(My neurologist has no experience with Belbuca, so I decided to go with Subutex,
and so I can split the tablets if needed.)
Peter W.
A Medical Reply
There is a lot of confusion about withdrawal from opioids.
Patients who are on high doses of opioids (much higher than what you are taking)
will go into opioid withdrawal when stopping opioids. This process will be
accelerated and worsened by taking buprenorphine in any form as it displaces
opioids from the opioid receptors (it binds much more strongly to the opioid
receptors and kicks out the regular opioids).
However, patients on low dose opioids (such as you) do not experience withdrawal
(except in rare circumstances) but rather just experience a marked increase in
RLS symptoms (since they have stopped an effective therapy for RLS and would be
no different from stopping any other class of RLS treatment). Starting
buprenorphine the day after stopping and opioid will take over effective
treatment of the RLS so there should not be very much uncontrolled RLS. That is
assuming that the correct dose of buprenorphine is taken but the amount needed
can vary considerably so it may take a few days to find the lowest effective
dose.
Subutex is only approved for opioid addiction treatment but can be used for
other purposes off label. The lowest dose of Subutex is 2 mg (2000 mcg, so even
¼ tablet is 500 mcg) compared to Belbuca 75 mcg. I find that the Belbuca is very
easy to take and adjust and works as well or better than sublingual
buprenorphine at much lower doses.
Sent: Tuesday, April 21, 2020 11:12 PM
Subject: RLS Augmentation
I have been taking Ropinirole for over 15 years for my RLS however I am now
experiencing augmentation. I am now trying to wean myself from Ropinirole and my
Doctor has prescribed 150 mg of Lyrica to take 2hrs before bedtime to help
during the weaning process. However, it is not helping.
My Doctor is now suggesting taking 150mg of Lyrica twice a day to see if that helps. My Doctor does not have experience with RLS so I am not sure if this a good solution. I don’t think my Doctor will prescribe opiates. Are there any other suggestions that you may have.
A Medical Reply
Unfortunately, Lyrica often does not help getting off a dopamine
agonist drug like ropinirole. Adding an additional dose during the daytime will
likely only cause daytime sedation without helping your RLS very much. A better
idea would be to take a higher dose (up to 300 mg) just in the evening. However,
even that is unlikely to control your RLS while off ropinirole.
We typically use opioids as they work incredibly well in this situation. You may
have to find another doctor who is both experienced in treating dopaminergic
augmentation and willing to prescribe opioids.
Sent: Wednesday, May 13, 2020 4:31 PM
Subject: RLS
My RLS is very bad. I used to take ropinirole but hit a dead end with it now in
on pramipexole and taking 20 x 0.088 mg I’ve asked my doctor for help as I’m
having gambling compulsions and that I need more and more pramipexole to work I
was tired in gabapentin but it did agree with me then I tried pregabalin at 400
mg each night my doctor says he’s spoken to a neurologist and they think I
should use codeine and tramadol I know it won’t work.
I will end up dying with what I’m having to take and I even brought black market zopiclone.
Stephanie S.
UK
A Medical Reply
The issue is that the dopamine agonist drugs (ropinirole and
pramipexole) work very well initially but then cause a worsening of RLS called
augmentation. In addition, compulsive behaviors like gambling are common with
these drugs. The treatment is to get off the dopamine drug and not take it
again.
You can stay on the pregabalin but you will need additional medication to get
off the pramipexole successfully. That typically requires potent opioids and
unfortunately, tramadol and codeine are very weak opioids and will not be
helpful in your situation for the majority of RLS patients. We suggest
medications like oxycodone or methadone but they are typically very hard to get
from UK doctors.
I have attached our article on how to treat augmentation which may be helpful to
your doctors if they actually read it and follow the information.
Sent: Saturday, May 30, 2020 4:21 PM
Subject: Insomnia RLS
I am taking 100 mg tramadol and 150 mg Pregabalin. My legs are fairly under
control however I have terrible insomnia. I am really worried since tramadol is
the only opioid that is available where are I live. It is very difficult to have
access to oxycodone.
Do you have any suggestions to what what I should do about my insomnia I take one 50 mg tablet of tramadol at 8:30 p.m. and 2nd tablet at 9:00 p.m. and go to bed at 11:00 p.m. however I am not able to sleep at all?00
Pranjal S.
A Medical Reply
There are 2 possible issues causing your insomnia. It is very
common for RLS patients to have insomnia even once RLS symptoms are controlled.
We typically treat this with drugs like pregabalin which you are taking. Perhaps
a higher dose might be helpful if it does not cause problems with next day
sedation.
The other problem might be tramadol which can also cause insomnia. The treatment
would be to change to a more potent opioid like oxycodone or methadone but as
you stated that is not an option.
You could just treat the insomnia with sleeping pills (like Ambien, Lunesta)
which you could discuss with your doctor.
A Reply from Prnjal
Sent: Tuesday, July 21, 2020 9:43 PM
Subject: RLS
I have been doing reasonably well for the last few months. I am taking 0.125mg
of Pramipexole and 19mg of Tramadol (half tablet of tramadol). My legs are quiet
for the most part these days however lately I have been feeling those symptoms
in my palms. I have to get an IV Infusion in the coming week as my ferritin is
30.
I read in your files that the first step for resolving augmentation should be increasing iron levels. So I want to know if the IV Iron infusion will help my RLS symptoms in palms. If not, does taking Gabapentin or Pregabalin help with symptoms in hands ? Since my legs are quiet, I am wary of reducing Pramipexole.
Pranjal S.
A Medical Reply
Pregabalin or gabapentin may possibly help temporarily but the
real problem may be augmentation caused by the pramipexole. You can stay on the
drug and add other medication to treat the worsened symptoms but it will
continue to worsen.
What we usually do is stop the pramipexole and use more potent opioids to treat
the RLS. After a few weeks, the RLS then becomes easier to treat. But as you
already know, when you stop the pramipexole, the RLS will get markedly worse
(for a few weeks).
Increasing iron levels may help decrease the augmented symptoms but most likely
would not completely resolve your problems.
Sent: Thursday, June 4, 2020 6:00 AM
Subject: ferritin levels
My husband had an iron infusion in August 2019. 8 weeks after the infusion his
ferritin was 350. He slept like a baby until January,
and since then RLS symptoms have been up and down. His ferritin in
February was 449, TIBC 260, iron 109, transferrin 42%. Since then his
ferritin went to 495, now at 450. I know ferritin is an acute phase
reactant. Can lack of sleep and the stress it causes drive it up?
Are there other parameters that you use to determine when
another iron infusion can be had? I watched a webinar on RLS foundation by
Dr Connor that mentioned they were looking also at hg/hct levels.
Judy T.
A Medical Reply
You are correct about ferritin being an acute phase reactant
which can be caused by even minor issues such as a minor cold (over a month
previously), allergies, other infections/inflammatory processes, physical
trauma and possibly even stress. It is not clear whether
sleep deprivation might cause this effect but it might be possible.
The major way to check to determine if the ferritin is falsely elevated is to
correlate this with the iron/transferrin saturation. Levels under 20% are very
low and we generally do not transfuse iron once saturations are close to or
above 45%. In your husband's case, the transferrin saturation is fairly
high so the ferritin is likely somewhat accurate (it still might be a
little higher than expected).
Checking hemoglobin or hematocrit levels is helpful only when they are low (or
dropping) as the bone marrow grabs iron preferentially from other tissues and
these numbers may be quite good even when the ferritin and iron levels are quite
low. One of the best tests for iron deficiency would be a bone marrow biopsy
(quite painful) so that is only done for significant hematologic or cancer
disorders.
The best test for the amount of iron in the brain would be a spinal tap
(only used for research) or better, a brain biopsy (never done
except for research studies using the donations in the brain bank). There
are studies using MRI scanning for brain iron but that is not
accurate enough for general clinical use.
Sent: Wednesday, June 10, 2020 3:31 AM
Subject: Advice on changing medication for RLS
I have been taking Pramipexole for about 10 years during which time the required
dose has increased from 1 to 3 x 88 mcgm doses. Recently I realized I would have
to add yet another dose to maintain effectively, and decided to attempt to
change medication to Dipyridamole, which my UK GP thought would be an
interesting experiment.
So far, after tapering for 2 weeks I have now spent 2 weeks on zero Pramipexole and 200 mg Dipyridamole, and am struggling through the effects of unmitigated RLS (the Dipyridamole seems to do nothing so far), on the basis of the following assumptions:
1. That the increase in severity of RLS has been due to
augmentation and not a change in the condition. (Prior to starting Pramipexole I
had taken Ropinirole for about 2 years during which augmentation appeared to be
happening quickly - the change 10 years ago to Pramipexole was immediately
highly effective at 1 dose).
2. That after a period of no Pramipexole (which I read might be of the order of
3 weeks) the RLS symptoms will reduce to a level more like they were when I
started medication, i.e., that augmentation can be reversed.
3. That having achieved a pre-augmented condition, the Dipyridamole can be shown
definitely to work, or not.
Looking forward, if Dipyridamole does not work, as seems likely, I could then:
• Resume Pramipexole in the (forlorn?) hope that it would work
for some years again from a lower dose before the cycle repeated.
• Try Gabapentin or Pregabalin: My GP is unwilling to consider these, saying "
their withdrawal effect is markedly worse than what you may experience from the
Pramipexole".
• Try a low dose of a Dopaminergic together with a low dose of Codeine - a
mixture used successfully by my sister.
I would be most grateful to hear your commentary on these assumptions and
possible future regimes.
Paul M.
A Medical Reply
You are mostly correct in your assumptions. One of the issues is
that a return to baseline after stopping a dopamine agonist like pramipexole MAY
occur after a few weeks but your baseline may have changed after 10 years. In
addition, many patients do get improvements in their RLS after a few weeks but
may never return to their previous baseline (if after much shorter durations of
dopamine therapy).
We are still learning about drugs that act on the adenosine system (like
dipyridamole) but we are not sure how potent these drugs are for treating RLS
(especially during withdrawal from dopamine drugs in augmented RLS patients).
There is little or no withdrawal from gabapentin/Lyrica especially if they are
withdrawn slowly over a week or 2. Your GP is misinformed on this issue.
However, these drugs most often are not that effective in patients who have been
on dopamine agonists already (and especially patients who have augmented with
those drugs).
You might get by with a combination of low dose codeine and gabapentin/Lyrica.
However, you would most likely do extremely well with a low dose of a potent
opioid like oxycodone or methadone (although I am assuming that potent opioids
may be quite difficult to get in your area).
I would avoid dopamine agonist drugs as the risk of going back into augmentation
is fairly high.
Sent: Thursday, June 11, 2020 7:06 AM
Subject: OxyContin
I am currently on OxyContin 10 twice a day, and Oxynorm5 once,( to make the
shortfall of the OxyContin.)
I notice that I get good relief from the OxyContin,( often over 7 hours)
I'm wondering if it would be ok to try going on Oxynorm5 four times a day, thus reducing the total daily opiate intake. I appreciate the bother of waking in the middle of the night to take a pill, and also the possibly remote chance of addiction, (from continuous highs and lows).
Is this proposed strategy practical and am I being silly worrying about addiction? I have been described as "opiate responsible" by my consultant.
It would be helpful to have your backing if you feel it is worth a try.
David B.
A Medical Reply
It is not clear whether taking the short acting oxycodone would
allow you to less opioid than the long acting oxycodone. There is no reason not
to try it except for the likely possibility of having to wake up in the middle
of the night to take another short acting dose.
The concerns about addiction have more to do with the total dose rather than
short versus long acting. The long acting has been promoted by the drug industry
as less addictive since the though was that continuous control of pain would
enable a decrease in total dose (which is definitely not certain).
A Reply from David
Sent: Tuesday, August 4, 2020 3:28 PM
Subject: Gabapentin.
I have searched your site, but am unable to find an answer to my question.
What is the highest effective dose of Gabapentin specifically for RLS? Given the balance between relieving RLS and unwanted side effects. (Horizant is not available in my neck of the woods)
.David B.
A Medical Reply
There is no official maximum dose of gabapentin for treating RLS. Some patients have complete success with doses as low as 50-100 mg but most need doses in the 300 mg to 900 mg range. Often, therapy is limited by side effects which include sedation, confusion, clumsiness, etc. The other limitation for a maximum dose is that gabapentin does not get well absorbed with higher doses (greater than 300-600 mg) and giving more medication most often does not result in higher blood levels of the drug. For that reason, I rarely go beyond 900 mg to even 1200 mg.
Horizant was designed to overcome this issue (it is a pro-drug of gabapentin that turns into gabapentin after getting very well absorbed from the gut into the blood).
Lyrica (pregabalin) works on the same receptors as gabapentin but does not have any absorption limitations. You can increase the dose (maximum 300-450 mg) to get maximal therapeutic effect when not limited by side effects (similar to gabapentin).
Sent: Saturday, June 20, 2020 10:17 AM
Subject: Dental and gum problems
I am 74 years old and have had severe RLS for about 25 years, with medication
the last 10 years. I should add that I am very sensitive to medication and the
lowest level of any med is mostly sufficient .
I started medication with Pramipexole 0,088, going up to 0,13. When Augmentation
set in, I added Pregabalin up to 125 mg. Side effects to Pregabalin were bowel
items, heavy indifference to everything and dizziness. I therefore switched to
Neupro which caused me extreme dizziness. I felt so insecure I did not even want
to cross a street.
So after the Neupro I switched back to Pramipexole 0,044 in
the afternoon, 100 mg Gabapentin at 8 p.m. and 0,088 Pramipexol at 9.pm. But
around the time I started the Pregabalin and then Gabapentin I noticed heavy gum
problems, swelling and pus and have it since. I am very unhappy about it and my
dentist too.
Have you heard about severe gum problems with either Gabapentin or Pregabalin ?
If I did not have these problems I would stay with the medication for the time
being because at least Pregabalin/Gabapentin seem to make me fall asleep with
sleep for 5-6 hours - not every day but many.
But the gums are making me think if I should switch to an
opioid, maybe Targinact ( I fear the constipation) or better Belbuca, which I
learned costs a lot of money but if life gets better and more of my teeth will
survive. When switching from the above mentioned medication (pramipexole and
Pregabalin) to an opioid - how should I do it. My doctor does not believe in the
gum connection and believes I should stay with Pramipexole and Pregabalin. (A
relative of mine is a doctor and could make out prescriptions).
Christa T.
Austria
A Medical Reply
I use a lot of gabapentin and pregabalin but have never had
a patient complain of gum problems. However, gum swelling is listed as one of
the side effects of this drug (but it is still uncommon).
If you stay on the pramipexole, the augmentation will continue and you will
likely have to increase the pramipexole and pregabalin (if you can tolerate it)
with time. The best approach would be to change to a drug like Targinact.
Sent: Tuesday, June 23, 2020 7:58 AM
Subject: How to treat Restless Legs Syndrome
I am 17 and have been diagnosed with RLS for 4 months . I have during the day and during the night ,7 days a week. What would be a good non-drug therapy and a good drug therapy. I also had 2 relapse periods in which I was free from RLS. The first one lasted approximately 20 days and the second one approximately 2 months.
Does that mean that there is something I take or do that causes it?
Ivan S.
A Medical Reply
It is a little more complicated. There may be triggers like stress, over the counter drugs (like Benadryl products), low iron levels, and other issues that worsen RLS.
The treatment depends upon how severe/disruptive the symptoms are, what time of day they occur, how frequent they are and how you cope with them. Only then can a doctor (one who is knowledgeable and there are very few of those) decide on the correct therapy.
A Reply from Ivan
Sent: Wednesday, June 24, 2020 10:54 PM
Subject: RLS come and go?
I have mild RLS during the day and night. I fear that it will get worse in the
future and I won't be able to learn at school or perform a job. I am only 17.
Ivan S.
A Medical Reply
RLS may come and go. However, with proper treatment, the
symptoms can almost always be well controlled.
The important issue is to stay away from dopamine drugs like Mirapex or Requip.
Sent: Tuesday, July 7, 2020 11:19 PM
Subject: Re: Switch from oxycodone to methadone
I have been on methadone since the middle of last year , and was having very
good results controlling my restless legs with it. I
In the last 2 weeks I have had a hip replacement and the the drug has become
less effective. I take 5 mgs at around 5:30 and an additional 2.5 mgs before bed
at around 11 pm. In past this has been very effective. I do not take any during
the day just using at night for symptoms.
Is have you had any experience with the methadone's effectiveness dropping off during the recovery period of the surgery, and if so ,might I expect a return to more effective control of the RLS asI recover from surgery.
John E.
A Medical Reply
Some patients get great relief from pain from methadone
while some post op patients do not.
If other opioids are needed (such as Norco), then the methadone should be
stopped until the need for the Norco is done. The frequent dosing of drugs like
Norco or Percocet postop usually are sufficient enough to control RLS.
A Reply from John
Sent: Thursday, July 9, 2020 12:46 PM
Subject: Re: Switch from oxycodone to methadone
I have stopped all pain meds aside from being back on the methadone now at the 5 mg. at 5:30 to 6 pm then 2.5 mg near bed at around 11. As the hip surgery gets farther out it’s my hope the efficiency of the methadone gets better again in controlling my symptoms. It was working well but it’s difficult dealing with a combination of pain and RLS symptoms to truly know if one is contributing to other.
I can only hope it gets better , because unless there is some new novel treatment or discovery, I am running out of options.
John E.
Sent: Wednesday, July 15, 2020 8:24 AM
Subject: Update, and antidepressant question
First, an update:
I am on 12.5 mg methadone and 900 mg gabapentin for RLS. This controls my
symptoms very well. The methadone has been essential for my RLS, as I have had
to eliminate all DAs due to augmentation. (Not sure if gabapentin is necessary;
I may try reducing that.)
However, I developed depression, which you suggested may be due to the methadone
and/or gabapentin.
You suggested buprenorphine might work better for me. So I tried it, as Subutex
2 mg tablets. (I cut those down to about 750 mcg doses.)
Unfortunately, it didn't pan out for me. It controlled the RLS, but I felt much
worse: alarming anxiety and more depression. After about 10 days, I had to
switch back to methadone, after which I felt immediately better. (I kept the
Gabapentin at 900 mg/day throughout.)
Next I tried bupropion XL for the depression. I started at 150 mg daily for a
month, and it worked pretty well. But depression was not 100% gone, so I tried
300 mg for 10 days. That gave me quite bad side effects: dizziness, some
anxiety, and some tinnitus (all can affect up to 10% of users, from what I've
read). So I went back to 150 mg 4 days ago. The depression is largely
controlled, with side effects lessening. But the tinnitus is still there. (Still
some 300 in my system, maybe?) Tinnitus is at an acceptable level for now, but
I'm concerned that It may get worse even at the 150 mg level.
A few questions:
1. Is there any other antidepressant you think would work as well with fewer
side effects, assuming it's necessary to stick with methadone? I tried
sertraline, but it ramped up the RLS symptoms (as expected of an SSRI) plus I
had some anxiety spells.
2. Or is there an alternative to methadone that causes no depression? Maybe some
other opioid?
Peter W.
A Medical Reply
It is possible that Belbuca (a better and lower dose of
buprenorphine) might work better than the Subutex. Only trial and error can
determine this.
It is possible that other opioids might not cause the depression but again, only
trial and error can determine that.
Wellbutrin is the only antidepressant that does not worsen RLS so you may be
stuck.
It is still possible that the gabapentin may be causing or adding to the
depression. It often takes a month or longer to get the full effect from any
antidepressant.
Sent: Thursday, August 6, 2020 2:38 AM
Subject: RLS
Since last writing to you, I have switched from liquid Methadone 8mg to
Buprenorphine in tablet form. (A 2mg tablet).
The switch from methadone was as much about severe depression as about RLS,
perhaps more.
After two months of experimenting, I now take one-eighth (0.25mg) of a 2mg
tablet three times per day. When taking a single night-time dose or a morning
and evening dose I experience between-dose depression, severe, starting six to
eight hours after dosing.
The RLS is very well-controlled, and I wondered if it would be a good idea to
switch to a patch, both for the lower dose and for the steadiness of the blood
levels.
We have no Belbuca buccal patches here, (in South Africa), but we do have
Sovenor Patches in 5/10/20mg strength, giving a nominal 5/10/20mcg per hour over
seven days.
Apart from the between-dose depression, I suffer from constipation which is
extremely difficult to manage.
Perhaps a low-dose patch would help with that. If not, would the addition of
Naloxone help at all?
Bronwen H.
A Medical Reply
It sounds like the Sovenor might be a reasonable choice.
The doses are low so you may have even fewer side effects.
For the constipation, try MiraLAX. If that is not helpful, there are several
pills that work like naloxone (Movantik for example) and can help the opioid
induced constipation.
Sent: Friday, August 7, 2020 4:55 AM
Subject: Iron IV Treatments
I have what would have to be categorized as a severe case of RLS. About a year
ago while living in Canada I started taking a product called Ferramax 150 which
is a Polysaccharide iron complex with 150mg of elemental iron once a day. My
doctor explained that this is made from cow's blood and thus is better able to
pass through the blood/brain barrier. It helped for a while but I still needed
to take 1,000mg of magnesium every night as well.
I am now living in Europe and cannot find anything like Ferramax here. I am
thinking about trying an iron IV treatment at a clinic here. They are offering:
IV Iron (Cosmofer) or IV Iron (Ferinject).
Which one would you suggest taking, if either? Or is there a specific
formulation that I should be asking for?
Alan L.
A Medical Reply
Either of those IV iron preparations would be fine.
There is no oral iron that passes better through the blood/brain barrier. The
only difference is how well oral iron gets absorbed from the gut into the blood.
Once the oral iron enters the blood, it is treated the same as any other iron
preparation.
Sent: Tuesday, September 22, 2020 12:13 PM
Subject: Hoping you can help me get infusions
I was given your email address by one of the admins on the RLS.org discussion
board as I have been telling them how I am at the end of my rope trying to get
iron infusions. I got my doctor to do an iron panel and have attached the
results. Sorry about my own notes on them. I have also attached my history with
RLS which is rather short and probably mild compared to the cases I've read
about. But when you're not getting any sleep for days at a time, it seems as
severe as any other case.
I am hitting brick walls trying to get either my PCP or neurologist to order
infusions for me. I am now going to try my rheumatologist--I have SLE and
Sjogren's (and Raynaud's). But can you offer ANY advice on how I can get someone
to simply let me TRY iron infusions? I can't understand why it should be so hard
to get what ought to be a simple and quick remedy for so many.
I have an appointment this Friday morning with my PCP. I had convinced him to
order an iron panel for me, as I said above, but apparently he thinks my results
are normal. He MAY be willing to send me for infusions but won't call it iron
deficiency so that insurance will pay for them. If what his nurse is telling me
is true, he seems to think it would be lying to the insurance company.
I don't know if you need any further information from me. But my stats are that
I am 58, 5'6", 192 (obese and trying desperately to lose weight but cannot seem
to drop a single pound even though I have for 60 days now done daily exercise
from 15-60 minutes and have kept my calories between 1300-1500). I think I could
consider myself fairly healthy if I could get some sleep and some energy back.
I have been trying so hard to get infusions before this time because we were
planning a one-week road trip to Gettysburgy for my husband's 60th birthday on
October 14. But it may be too late even now for infusions to work. Don't see how
we can travel if 3-4 nights a week are zero sleep.
One last thing: the neurologist I just saw wants me to take iron gluconate
3xday. I only today started taking a 2nd pill as I wanted to see how I did with
just one first. One at dinner has been fine for 4 days, but in trying one with
breakfast today I have had diarrhea . May not be related, but I'm a little
afraid to take another today.
I appreciate ANY help you can offer. Sorry if I went on too long. Exhaustion
makes me ramble, hoping that some of it makes sense.
Celine M.
Birmingham, AL
A Medical Reply
First, let me say that your RLS treatment has not been
optimal. It is a good thing that you had side effects from the Requip or
otherwise you would very likely have developed augmentation (a worsening of RLS
from taking a dopamine drug) which occurs at a rate of 7-8%/year of people who
take a dopamine drug (see attached augmentation article). With proper treatment,
almost all RLS patients should get excellent relief from their very disruptive
RLS symptoms.
The issue with iron and ferritin levels is that the normal lower limits (below
which is considered iron deficiency) varies considerably from lab to lab. Your
lab chooses 15 as the lower limit for iron saturation (this is more accurate
than total iron as your body has produced more iron binding protein to carry the
decreased iron stores). Many other labs use lower limits for the iron saturation
as high as 20% or more. Your value at 18% is considered low (see attached Iron
for RLS consensus article which recommends iron infusions for patients under
20%).
In addition, the consensus paper also recommends iron infusions for RLS patients
with serum ferritin levels under 100 (your was 30).
Oral iron rarely helps as absorption decreases as ferritin levels approach 50
and we only recommend oral iron once a day due to decreased absorption due to
negative feedback from hepcidin (a hormone that goes up when increased oral iron
is taken).
You might be able to convince your doctors that iron deficiency is the correct
diagnosis based on the consensus paper on iron therapy for RLS.
Sent: Thursday, September 24, 2020 10:26 AM
Subject: Re: Doctors for RLS in Canada
My last contact with you was November 2015 and not much has changed. You had suggested a doctor in Scarborough, Ontario.. That was a bust. Not only was he hours from me but he was little interested in my problems. He did prescribe some older drugs that I had tried before and that didn't do anything so I stopped seeing him. Opiates were not in his vocabulary ( his words). I'm almost 68 years old and I don't care about addictions at this point.
I have also been prescribed Cannabis oil which didn't help
at all so I'm back on Mirapex except they have stopped making anything other
than small dosage pills like 0.25 which my doctors won't prescribe and I'm on a
generic which is giving me huge side affects.
You had provided me with a link to a symposium you had attended in Europe and I
printed it off for my family physician who didn't even read it and it is not in
my file. I thought I had saved it on my laptop but can't find it.
The neurologist I'm seeing isn't very informed about RLS either. I have been trying to get Neupro patches to see if they would work for me but it's not covered by the health plan and I can't afford the $140 plus a month. So I'm back to square one.
Jane M.
Cabada
A Medical Reply
Neupro may be better than Mirapex but at the high doses
that you will need, the Neupro also causes and worsens augmentation. Opioids
like methadone/oxycodone are currently your best hope.
In iron infusion might also be very helpful (even with fairly good ferritin/iron
blood levels) but that may also be hard to get in Canada.
I have had a few Canadian patient come to see me (even a recent one from
Ontario) who was able to get opioids from the primary care doctor following my
suggestions but that is likely very rare.
Sent: Monday, September 28, 2020 5:18 AM
Subject: Temgesic for Refractory RLS
We live in the UK and I am writing on behalf of my wife who has refractory RLS.
We are asking our consultant to agree to prescribe Temgesic 200 mcg
(buprenorphine). They are very reluctant because of prejudice against opioids.!
My wife has an under active thyroid gland but doesn’t take medication for it. Although this will be decided by her UK doctor could you tell us if you are aware of any serious problems with taking Temgesic 200 mcg with this condition.
Also we are members of RLS-UK and are trying to get our
doctors to prescribe Temgesic/buprenorphine to treat RLS when all else has
failed. Could you please provide any studies or evidence to support the safe and
successful use of this treatment.
Brian & Bridget H.
A Medical Reply
The use of buprenorphine for treating RLS is relatively new
so there is no literature on the use of this drug for treating RLS. However, a
group of us have just written the second revision of the Mayo Clinic Algorithm
guidelines for treating RLS and this will be published in the Mayo Clinic
Proceedings Journal (which is a well-accepted prestigious journal) in the next
few months and that will be the first official recommendation for using
buprenorphine for treating RLS.
However, I am attaching our article on the appropriate use of opioids to treat
refractory RLS. Since buprenorphine is much safer than regular opioids, it
should be quite reasonable for any doctor to realize that buprenorphine should
be even a better choice than regular opioids for treating RLS. I use
buprenorphine extensively for treating RLS and have had excellent results with
much fewer side effects than with regular opioids.
A Reply from Bridget
Sent: Monday, October 26, 2020 10:00 AM
Subject: RE: Temgesic for Refractory RLS in UK
A while ago you kindly sent me an email explaining the suitability of
Buprenorphine for treating RLS, so I could use it as evidence to encourage my
consultant in the UK to prescribe it for me. Thank you so much.
The plan worked and my consultant has prescribed me Temgesic 200 mcg. I started taking it 3 weeks ago and the effect was immediate and like a miracle. I’m only taking about ¾ of a single tablet before bed and I’m sleeping through the night with no RLS breakthrough. I do wake up from time to time but go straight back to sleep.
I’m being to feel human again! Thank you very much for all
the help you give to the RLS-UK sufferers.
Bridget H., UK
A Medical Reply
It is great to hear that you are doing so well. That echoes the experience I have with treating RLS with buprenorphine. The Temgesic is not available here in the USA but would be a good addition. Luckily, we have Belbuca which works very well.
Sent: Monday, September 28, 2020 2:46 PM
Subject: end of my rope
Hope for a resolution of my RLS symptoms is the only thing keeping me going. Two
months and one week ago, I received my first ferritin infusion. My ferritin
level had been 41, then after four months of 54 mg of oral iron bisglycinate
every other day, it rose to only 64, and now, two months after the IV, it’s now
394—wonderful!—BUT! I still have all the same level of symptoms! I have not been
able to reduce medications at all.
Having augmented out of the dopamine agonists and being unable to tolerate
gabapentin, I have been taking 10 mg. oxycodone at night and then another 5 mg
when my legs wake me between 1 and 2 am. The extended release formulation at the
same 10 mg dosage is not strong enough to enable me to fall asleep. My legs are
relentless until I take an additional 1.25-2.5 mg of the immediate release
oxycodone, depending upon that night’s severity of symptoms. (I cut the tablets
into quarters, trying to take the least amount that is effective). And then,
with the ER formulation, my legs will still wake me between 1 and 2 am, but
often I can avoid taking another dose of oxycodone so long as I get up and walk
around for a bit, take a homeopathic calming formula, use a hefty vibrator on
calves and thighs, and use heat packs on my legs. All of that might get me three
more hours of sleep, sometimes less than that, and occasionally sometimes four
hours. But it is interrupted sleep.
I read that infusion results can take up to three months to manifest, but since
I’ve not even had any lessening of symptoms, I’m thinking I’m probably in the
percentile for whom the infusions are ineffective, for unknown reasons.
Is there anything else in the RLS-related “bag of tricks” that I might try?
Is there a strong link between diet and RLS? I mean, beyond avoiding sugar and
gluten and caffeine and alcohol, etc.?
Should I just “bite the bullet” and take a larger dose of the ER
formulation—such as 15 mg—and hope it gets me through the night, without the 1
or 2 am wakeup? I really hate to take that second dose, because I want as much
mental alertness as possible during the day, but I hate to increase the first
dose, too!
Or should I go back to the immediate release at 10 mg at night, and accept the
fact that I have to take something more—2.5 to 5 mg more- in the wee hours of
the next day?
My side effects are extreme dry mouth in the middle of the night and sometimes
what is called “daytime somnolence.” I understand that the opioids also affect
the digestive system, which, of course, thereby affects the immune system.
I’m just hoping to get off these medications. I want my full brain capacity
operational.
Jean H.
A Medical Reply
It can take 2 or more months to get the full effect of IV
iron (hopefully, they gave you one of the RLS effective types of IV iron).
However, I would guess that if you have not gotten any benefits so far, that you
will not in the future.
You probably would respond to higher levels of oxycodone (either immediate or
extended release) but this would result in increased daytime sleepiness
(especially with the extended release form as you are likely a slow metabolizer).
You might discuss trying the immediate release only but at higher doses that
reliever your RLS symptoms without causing daytime sleepiness.
If that is not successful, then I would suggest that Belbuca should be
considered. It is a safer type of opioid that is often very effective for
controlling RLS and tends to cause much fewer side effects.
A Reply from Jean
Sent: Tuesday, September 29, 2020 8:24 PM
Subject: Re: end of my rope
Is Belbuca a brand name for buprenorphine? Had never heard of Belbuca before
your email to me.
Also, if Belbuca is “safer” and causes “much fewer side effects,” why should I
wrestle with oxycodone at all? Why not go straight to Belbuca?
Jean H.
A Medical Reply
Belbuca is a brand name for buprenorphine that is approved
for treating pain (at low doses) compared with other higher dose formulations of
buprenorphine that are only approved for treating opioid addiction.
The downside of Belbuca is that it is expensive and may not be well covered by
many insurances including Medicare Part D.
You have not heard much about Belbuca since it is a relatively newer drug and I
was the first one to use this particular and now only a few other RLS experts
are also using it.
A Reply from Jean
Sent: Sunday, October 25, 2020 12:04 PM
Subject: Belbuca film for me?
I’ve had RLS for 50 years, was on various dopamine agonists for about 40 of
those years. Within last year or so, I augmented out of the last of them. Can’t
handle alpha-2-delta ligands, and ferritin infusions didn’t alleviate symptoms
at all, so have had to go to opioids. Tried Tramadol, was too sleepy to function
during the day, despite dosage reduction. Was prescribed oxycodone, which
initially worked wonderfully, but I am now experiencing what an oximetry test
showed to be 15 times of “desaturation” at night. A sleep test is recommended; I
will have it done ASAP.
I seem to be largely aware all night long of this stop-breathing issue at it’s
occurring, because often I take deep breaths to compensate. These episodes of
not breathing occur while I am half-dreaming and my body tenses in order to
solve an imaginary problem of some kind, whether a crisis or not. I often have
to consciously relax my body. And when I’m trying to solve the problem, I stop
breathing. It seems to me that if I could get into a deeper sleep, I wouldn’t be
half awake to be trying to solve imaginary problems, but I can’t get that kind
of sleep.
And to add to all of this, my heart has been affected. While I was on oxycodone,
right before I went off it, I had “heart pressure” every night. In the center of
my chest, there was a heaviness, a pressure, that has never been there before. I
think that pressure even antedated the oxycodone, but I’m not sure. At first the
pressure would go away during the day, but the last few days before quitting
oxycodone, it lasted throughout the day, and I became fearful of going to bed,
lest I not wake up, due either to not breathing or heart stoppage.
Here’s the issue: You suggested in a prior email that I try buprenorphine
(Belbuca) but after checking online, I saw that it can “slow or stop” my
breathing! I’m already having problems with that. And yet … I can die from lack
of sleep, too! I feel caught between a rock and a hard place.
Right now, I am taking a minute amount of buprenorphine about an hour before
bed—literally, a tiny amount of powder that I lightly scrape off an 8 mg tablet
of buprenorphine. That tiny amount enables me to sleep without RLS symptoms, and
even during the day I can take naps or sit and read without having to take
additional dosages. I haven’t been able to do that in years. However, I am very
concerned still about my breathing and my heart. I need the smallest amount of
buprenorphine that is effective for controlling my RLS. What dosage would you
suggest? (I am assuming it would be in the form of Belbuca film.) I plan to also
take a homeopathic remedy with the Belbuca, to calm the mind, so perhaps my
breathing and heart issues will resolve themselves.
Any further input, insights or recommendations you can give me would be most
appreciated. I see my regular doctor tomorrow to discuss a treatment plan. He is
willing to work with me, even though he is only now learning about RLS.
Blessings,
Jean H.
A Medical Reply
It is not clear whether the oxycodone has anything to do
with your respiratory complaints. Although respiratory issues are noted to be
part of opioid therapy, this is more relevant to patients with COPD or sleep
apnea. Many of your complaints likely could be occurring on or off oxycodone.
Even though respiratory problems are listed for Belbuca/buprenorphine, these
problems occur much less (if at all) with buprenorphine but since it is an
opioid (although only a partial opioid), every possible side effect has to be
listed.
Belbuca is only better since the lowest dose starts at 75 mcg compared to
buprenorphine pills at 2000 mcg (2 mg).
Sent: Wednesday, September 30, 2020 5:38 AM
Subject: Worsening of RLS after steroid shots
My question is this: (and by the way, you have been extremely helpful to me
previously!). I have been on 2 mg of suboxone- very successfully for 2 years now
until recently. I was involved in a whiplash injury and had to have steroid
injections and a Radiofrequency cervical ablation (within a 2 month period).
Now I am up all night with both feet and calves jerking
with no relief. Do you believe that this will get better again? I am very
discouraged, and my health is suffering due to lack of sleep. I am a 65 year old
female who stays very active.
Nancy W.
A Medical Reply
It is difficult to answer your question since there are many factors that may influence RLS symptoms (for example, if you iron levels are decreased, that could trigger increased RLS symptoms). If you are having continued pain from your whiplash injury, that could easily provoke more RLS symptoms and when better might allow your RLS symptoms to decrease.
In addition, if you are not sleeping well (which causes increased sleepiness), RLS symptoms will worsen. Of course the worsened sleep which causes increased RLS symptoms may be a viscous cycle that feeds on itself.
A Reply from Nancy
Sent: Monday, October 5, 2020 7:01 AM
Subject: Switching from Suboxone to Belbuca
I have been on Suboxone 2mg with pretty good success for 2 years now. Since my
neck surgery, it is not touching my RLS symptoms.
I would like your opinion on switching to Belbuca, and the protocol in doing so.
I currently see an Addictionologist, but he has limited experience with RLS.
Nancy W.
A Medical Reply
It is quite difficult to answer your question as there is not a great dose equivalency from Suboxone to Belbuca. The concern is that your neck surgery has may have triggered worsened RLS (any surgery can do this). The Suboxone contains 2000 mcg of buprenorphine while Belbuca ranges from 75 mcg to 900 mcg. Only trial and error will allow you to determine what dose may be effective.
You may need additional treatment to control your RLS (and you won't know until you try Belbuca).
Sent: Friday, October 9, 2020 3:05 PM
Subject: Young and Running Out of Options
I am only 34 and have had RLS for about 3 years now. My symptoms only occur for
1-2 hours, but daily. On top of that, I incurred several musculoskeletal
injuries over this time that have not healed due to the chronic sleep
deprivation: including a patella tendon injury that has handicapped me. As such,
I’m desperate for a solution that will help manage my symptoms and improve sleep
for at least long enough to rehab my knee.
My symptoms started in my legs, but now only occurs on one side of my scapula.
Also, it will switch from side to the other randomly. Is this a common
occurrence? And, does it have any significance?
I have been on all the medications (gabapentin/Lyrica, opioids, and DA). The
only medication that worked well was methadone; however, I started to develop
gastroparesis despite my dosage being only 2.5mg. This seems like such a rare
occurrence, have you ever seen this before at such a low dose? I was given
pentazocine to replace the methadone. It does control the symptoms, but makes it
nearly impossible to fall sleep. Are there any other opioids or combination of
drugs that I could recommend to my doctor?
I’ve been told that you have a lot of first hand experience with IV iron,
particularly with patients who may be slightly outside the current guidelines.
Given my desperation, I am very interested in this as a treatment option. My
most recent ferritin was 254 and transferrin saturation was 35%. Based on your
experience, what would you assess the likelihood of my being able to obtain IV
iron treatment.
Oozz
A Medical Reply
It is not unusual for RLS to change from side to side. This
can occur for weeks (or even months) at a time of change on a daily basis or
even during the same day.
It is unusual to get GI side effects from that low a dose of methadone but some
people are more sensitive to opioids (although this can vary from opioid to
opioid). It may be worthwhile to try other opioids (since you have already noted
that pentazocine does not cause GI symptoms). One of the best opioids to try is
Belbuca as it tends to have less side effects than other true opioids (however,
it can be more expensive).
Given your iron and ferritin levels, it is much less likely that IV iron would
be helpful.
Sent: Monday, October 12, 2020 7:08 AM
Subject: Help with DAWS (Dopamine Agonist Withdrawal Syndrome)
This message is meant for Dr. Mark Buchfuhrer. I recently joined the RLS
Foundation. After sharing my story on the discussion board, I got you email from
a member of the RLS Foundation of which I am a member. They encouraged me to
write you.
I am a 68 year old male. I have suffered from RLS for over 25 years. I've been
on pramipexole for about 12 years. I had to slowly increase my dose to cover my
RLS. This summer I had gone up to 3 mg daily in divided dose, and was not
getting relief. I was having RLS nightly and it also affected my arms and torso
during the day. I was obviously in Augmentation. My local doctor did everything
they could do, including iron infusions. Nothing helped.
I decided to visit the Mayo Clinic RLS Sleep department the end of July. They confirmed that I am in augmentation. They put me on a 6 week tapering dose off of pramipexole, and concurrently placed me on an increasing dose of OxyContin. I did fairly well for 4 weeks. About week 6, I began to have breakthrough of my RLS at night. I quit my last dose of pramipexole on September 13. In the days that followed, I began to develop all of the DAWS symptoms: severe sweating, loss of appetite, severe depression, crying, yawning, nausea. I finally ended up in the ER with suicidal ideation 2 weeks ago.
At the time, they could not figure out what was going on. The Mayo Sleep neurologist thinks I am dealing with DAWS and said this will pass. But I am so miserable, I no longer want to live. I don't think they understand how miserable I am. I have lost all interest in life. I have lost over 25 pounds in 4 weeks. I have never dealt with depression like this before, and simply cannot go on living this way. I think I am one of those rare individuals, who had been on high doses of pramipexole for many years, and that perhaps I was simply tapered too fast. I will be having a Zoom visit with my Mayo Sleep neurologist tomorrow.
I think I need to be restarted on pramipexole (or
some other dopamine drug), until I feel better, and then do an extremely long
taper of perhaps 6 months or longer to see if that works. I have researched the
internet, and this is the only thing that makes sense to me. I am desperate, and
wondered if anyone can give me some input. I'm beginning to worry that the
pramipexole (or DAWS) is damaging my brain permanently....and I don't know what
to do. I'm crying as I write this, and am simply looking forward to some
relief....or I may go off the "deep end."
Dan M.
DAWS is not well understood. It seems to be more common in
Parkinson’s Disease patients as they typically take much higher doses than RLS
patients (although your dose at 3 mg is 5 times higher than the highest FDA
approved dose for RLS). You are correct in what you have noted about treating
DAWS in that you will likely need to get back on a dopamine agonist then taper
even more slowly (there are no guidelines on how slow to taper).
I might recommend Neupro patch and see if the lowest dose (1 mg) helps. If this
is not helpful, then going up to 2 mg for a few days may be necessary and you
can continue this titration until you find the lowest dose (even down to ½ a
patch) that relieves your symptoms. You can then taper very slowly (over at
least several weeks to months).
I suspect that the Neupro patch could be a better choice as it covers 24 hours
compared to only 8 hours or so with one Mirapex tablet and should be easier to
taper.
Sent: Tuesday, October 20, 2020 9:41 AM
Subject: RLS help.
I wrote to you in May of this year regarding my RLS augmentation asking for your advice, for which I thank you again.
I have now stopped taking dopamine agonists and asked my hospital doctor for Tramadol, he agreed and advised my General Practioner who prescribes it for me monthly (against his wishes). Over the past months I have weaned myself off Rotigotine, the final patch was removed in June and since then I continue to struggle for sleep. On average I get 2 hours before being woken by RLS and the 150 mg of Tramadol seems to be doing little or nothing. I was diagnosed with RLS some 30 years ago, Ropinirole was prescribed then followed other meds before ending up on the 3 mg Neupro patch.
My question is, will my body cope eventually allowing me to sleep, or am I destined to function with such little sleep or rest. My RLS begins around 5/6 p.m. when I take my first 50mg Tramadol, I then walk around my house until 10.p.m. when I try to sleep. I am so tired I fall asleep very quickly but wake sometimes within half an hour. I try not to catnap during the day but it is inevitable, I sometimes sleep almost standing up. Should I ask for more than 150mg Tramadol daily? If my body is capable of some sort of repair allowing me to rest and sleep after a period of time I will persevere, however, there are times when I become so low thinking there is no way out.
Linda H.
Increasing the dose of tramadol may help somewhat but may not help sufficiently. Furthermore, tramadol may also cause augmentation, especially at higher doses.
Adding gabapentin or Lyrica may be helpful to control bedtime RLS and helping to induce sleep.
However, the best treatment would be to change the tramadol to methadone or oxycodone. Unfortunately, if your doctor is reluctant to prescribe even tramadol, the odds are quite good that he could not prescribe a potent opioid like methadone or oxycodone.
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