Hi this is my 1st post in the group. I'm a 58 y/o guy who has had symptoms of RLS for at least 30 years. I write this post with benzos in the title as I strongly suspect their involvement in the development of my RLS symptoms. I'm currently at the end of a 9 month slow taper off of diazepine (Valium). My final dose was 0.25 mg/day until I jumped off completely about 2 months ago. I have been keeping a daily journal of symptoms during this period. A pattern emerged of RLS + gastric discomfort roughly 1 week following a dose reduction that would then stabilise as my body became used to the lower dose. I put these down to being physical withdrawal symptoms from long term intermittent benzodiazepine use.
Now since jumping completely - gastric discomfort + RLS symptoms were a nightly occurrence and despite trying a multitude of OTC remedies the only thing that made the symptoms disappear was a "rescue dose" of about 10mg Valium - that would last for say 2 weeks and the gastric discomfort +RLS would return.
I finally visited my doctor a few days ago and he diagnosed RLS & prescribed 0.25mg Pramipexole to be taken once at night time. As I'm very much trying to discontinue dependence on any drug - I only took half the tablet of 0.125mg to see if that dose would work. I've used 0.125mg on 2 nights now with good effect.
I only take the drug if I lie down to sleep and the symptoms are severe enough to prevent sleep onset. The 1st night - I took the drug (0.125mg) around 2 am and was asleep very soon after and woke feeling "fresh" and rested. The next night didn't require any drug... however - last night I took the drug (0.125mg) and again was asleep very soon and awoke following a very good undisturbed sleep.
I wonder if anybody else has attempted to approach their dosage at such a low dose and also after the onset of the RLS symptoms? I also intend to only take the drug if the RLS symptoms appear - not as a regular preventative every night.
Nor do I intend to increase the dose unless this current dose begins to lose its effectiveness.
Your thoughts are appreciated.
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DocUndy
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As this is rather a particular case - and I'm not sure if I relate to your dosages-- we start Prami at 0.088 and would not go above 0.25. - I would be inclined to use the email facility on
Thanx for your suggestion to email the Dr at rlshelp. Madlegs1 also suggested I do the same. I've written to him and hopefully he has the time to read & respond. I'll keep the group updated.
Thanx for your suggestion to email the Dr at rlshelp.
Elisse also suggested I do the same. I've written to him and hopefully he has the time to read & respond. I'll keep the group updated.
Yes I take pramipexole (however over here in Oz it is under the name of Siffrol. Could not survive without it. I have suffered from chronic RLS since childhood (am now 64) and after years of being told it was growing pains, attention seeking, all in my mind etc. when it became a choice of between a gun or ANY relief whatsoever, I eventually went to a doctor and didn't even attempt to describe the symptoms. I only told her about the chronic insomnia and she prescribed Normison (now Temaze) and it literally saved my life. Altho not always strong enough to combat RLS (altho at the time I had never heard of RLS .... seriously thought I was the only person in the entire world that had it).
Funnily enough ... not, that particular doctor was the one I should have actually confided in, as it turned out that not only did she understand the disease, she was also a sufferer.
I was eventually diagnosed at 48 and the meds I take, and work successfully for me, are Madopar and Sifrol. However I am now about to experiment with cannabis oil.
I take Siffrol dosage of 0.25 mg but I take 2.5/day. I was taking them on a nightly basis along with my other meds, but as RLS is quite unpredictable, when it began rearing it's ugly head again during the day I began taking it when needed and within 15 minutes all symptoms disappeared.
I have been taking this amount for approximately 2 years and as the symptoms have once again disappeared, I'm now back to night dosage.
You ask if the symptoms increase ... In my experience (having lived with RLS for 60+ years) yes they have increased. With or without medication. From what I've read, and also from my experience, this is inevitable.
I'm very new to all this RLS & dopaminergic treatments. From what Elisse posted earlier - the recommended dose is 0.25 mg/day - unless that was a typo? 2.5 mg/day is still well under the 4.5mg/day used to treat Parkinson Disease & you have stabilised to a single bedtime dose for about 2 years. Does that mean that you had earlier symptoms during the day that required some daytime dosing as well?
I'm on a very steep learning curve with all this RLS stuff but from what I'm reading - it appears to be chronic & augmentation is a real concern.
This link gives a good updated summary of RLS as of late 2016
No didn't take dose during the day 'as well ', took it 'ins
• in reply to
Sorry ... took dose when needed 'instead' of at night
Hi, the dose of 0.125 is the lowest dose for pramipexole and i am glad that dose worked. The highest dose that is now recommended to take is only 0.25mgs this is because so many people get Augmentation from this med and other dopamine meds. BUT, this type of med HAS to be taken on a regular basis, not as a when needed basis. If you are not suffering every night with RLS, then a take as you need med would be a pain med like Tramadol.
Thanks for your reply. I've noticed that the listed dose has 2 separate strengths which is very confusing. My brand of premipexole is called Sifrol and it is 0.25 mg per tablet. However - that is the salt. Premipexole dihydrochloride monohydrate.
It then lists underneath this dose ~ that it is equivalent to pramipexole 0.18 mg
Yes that's part of my query - as to whether is can be used as a PRN dose or whether is must be taken regularly to build up a certain blood concentration over time taking its half-life into account.
Fortunately - I don't actually suffer any pain - it seems to originate from discomfort in my abdomen - although the actual location varies. It leads to a regular uncontrollable spasm/jerk down one leg every 15 -20 seconds.
More often than not my right leg is affected - although it may decide to have a rest and on other nights the left leg takes over ~ bastard lol
This gastric/abdo discomfort is another thing that seems different to most people who have RLS.
I've taken various analgesics for other things at night over the years and they have no effect on the RLS unfortunately.
I'll definitely ask my doc about the dosing schedule ~ thanks again.
You dont have to have pain with your RLS, altho some do. The pain meds work for RLS with or without pain. The RLS experts these days are preferring to use the pain meds for RLS rather than the dopamine meds. I am talking about strong pain meds. ones which are opiate based.
My understanding also is that pramipexole is not an 'as-and-when' remedy but should be taken regularly. You could try kratom if it is legal where you live. I find it an effective as-and-when option. Incidentally, when I took pramipexole, I started on half a tablet of the lowest possible dose and it was effective ... for a while. I also found that I HAD to take it more than an hour before I went to bed. If I took it when I was in bed or within an hour of going to bed I had symptoms all night, as though I had taken no pramipexole at all.
Everyone is different and we just have to experiment until we can find what works for us. Pramipexole is not a drug I would ever take again. I will be 80 in s few weeks and my RLS began with the pregnancy of my first child 54 years ago I tried everything. But nothing exacerbated my symptoms more than Pramipexole which I have taken for the past 6 years I am in the process now of weaning myself off pramipexole - replacing with Gabapentin, and duet change
Elisse has stated the same info regarding taking pramipexole as a PRN - that it needs to be taken regularly. I'll be doing that from now on and will check with my Doc to see what he has to say about it.
Who had been saying that pramipexole has to be taken on a daily basis? And why should that be?
I read a Dutch forum story saying essentially the same; i.e. taking only pramipexole when the need was there, some 2-4 nights a week(don't remember exactly).
If it works for you,DocUndy, why not stick with it? And remember to take the lowest possible dose and don't go over the now max recommended dose, as mentioned by Elisse.
As far as I know, and I have read quite a few of the scientific papers on RLS and being a scientist myself, RLS-ers have increased dopamine in their brain, supposedly to compensate for the reduced amount or working of the dopamine receptors.
If I think about it, tour taking pramipexole, a dopamine agonist, a chemical that works like dopamine by binding to the same receptors, only when needed will keep the dreaded augmentation at bay. Totally, or at least much longer than a daily dose!
Be also aware that pramipexole worked wonders for many years for many people. Just watch out for the tinyest signs of augmenatation.
Thanks for your reply - what field of science do you work in? I'm a former neuroscientist but have been out of the field for over 20 years ~ but have a reasonable grasp of what these dopamine agonists are doing. I noticed Elisse mentioned that the max dose recommended is now 0.25 mg/day for RLS - it is of course much higher for PD.
That augmentation aspect is a bit scary - hence my desire to only take this drug as needed and at the lowest possible effective dose. Your reasoning follows a similar line to mine regarding taking a daily dose. I read that pramipexole has a half-life of 8 -12 hours - so a dose of 90 micrograms (my half tablet of 0.25mg taking the active ingredient into account ~ see my earlier replies for an explanation) would be practically gone by the next day. I'm in otherwise good health with no liver or kidney problems.
I'm going to quiz my doc about this daily dosage thing.
You take any dopamine med on a regular basis, its a fact. Otherwise you will get a yo yo-ing of dopamine if only taken when you THINK you need it. Most people find if they are late taking their dopamine med they will suffer big time that night. The dopamine meds are not made to be taken on a as need basis. If you dont have severe RLS and you can get away from taking a med every night, then take a different med, like i mentioned pain meds can be taken on a as needed basis.
I am sorry, Elisse, but it is not a FACT. It it a recommendation, based on how the studies underpinning the application of dopamine-agonists for the problem-at-hand (here: RLS) have been done. And all of those have been done with meds taken on a daily basis - as that is the standard in such situations. A study with meds to be taken only as-needed is very difficult science-wise, as it will be influenced heavily by occurrence frequency of the symptoms in the study-patients. That will make analysis and interpretation very difficult, if possible at all, owing to the large between-patient variation. Thus, such studies are rare - if they exist at all. And, thus again, no-one "knows", other than from own or others experience.
And apparently, DocUndy is not "most people" . I think you know - based on the many sane words you have written on this forum, I really appreciate them! - that RLS and its treatment is different for all of us. Reading about solutions that worked for others and getting advise on those simply helps to increase the awareness of the options one has as a RLS patient. It still needs to be discovered and determined what works for the individual.
The point is that the dopamine agonists are formulated to be started at the lowest dose possible. They used to automatically titrate people up. Now, not so much. But, dopamine agonists have always been "stay on lowest dose possible, and must be taken on a regular schedule" Your brain chemistry will be affected if you are giving it dopamine one day and not the next. So far the original posted has only been on his med for a few days. There are no studies at all on using Ropinerole or Pramipexole on an as needed basis, and the doctors doing a heavy load of research at Johns Hopkins, still say must be taken on a regular schedule, although they are not adverse to drug holidays if the dopamine med stops working as well, instead of upping the dosage, so as to get into the state of augmentation. As of NOW, this is how it is, and having your brain go up and down on dopamine is asking for trouble, It need to be kept in on even keel. But, in the end, we do what we feel is best and I can only ADVISE on what I have learned in 24 years of managing groups. I have studied RLS for a quarter of a century, and there is nothing that says it is ok to take as needed. That is the RESPONSIBLE advice to give. All we have here is screen names, so no way to check someone's credentials. Someone said the other day they are a doctor. now we have a scientist. We have no way of proving that on this site, because it is all anonymous, so forgive me if i am not overly impressed with the "scientist" reference. People can say what they want on here, and we have seen it all on this forum for years. All we can do is give out the advice from actual scientific studies and hope there are MORE studies in the future. Dopamine levels naturally drop at night time, soooooo....... good thing to not mess with it more than we have to. That is the working reason, in layman's terms, not to use dopamine "as needed". But, like I said everyone is eventually going to do what they want to.
I'm a former neuroscientist and would love to read any original research articles that pertain to the dosage regimen. I was thinking of it from a half-life aspect of the clearance rate of pramipexole - being around 8 -12 hours. At such a low dose and with a fairly rapid clearance - the drug is basically gone by the next night.
I'm in Australia & have the Sifrol brand (Boehringer Ingelheim)
My effective dose of the pramipexole salt is 0.18 mg ~~ Half a 0.25 mg tablet of pramipexole dihydrochloride monohydrate ~~
apparently this is equivalent to around 0.088 mg pramipexole.
Wonder why they state the salt dose and don't just go with the actual effective active ingredient does. So confusing as I've noticed the discrepancy in some sites when discussing doses. I suppose that's another thing I can look up.
Well, it is different dosing as listed in different countries. It does have a lot to do with the salt dose, and that is why it is differently stated depending on labeling laws in different countries.
Yes ~ it certainly is very confusing when the salt dose is 50% greater than the actual active ingredient. It can lead to wild overdosing if the recommended maximum daily dose is stated as 0.25 mg of the salt dose. That is saying in effect that you shouldn't exceed 0.18 mg of active pramipiexol. I need to look into this aspect more closely to see just wtf is going on
Even so called scientific studies may not actually be scientific- see todays headlines about big pharma controlling information and results dissemination.
Unless a study has been assesed by the Cochrane Review , its claims have to remain in doubt.
Ultimately we are all experimenting on this site , finding out what suits us as individuals. Each of us is different and react/ process drugs in different ways. This is a factor which has hardly impinged on the pharmaceutical community. Oxycontin only lasts 8 hrs with me instead of the cited 12. ( I have a fast metabolic rate/ and oxy has a problem lasting anyway)
So- the beauty of this site is that we can share knowledge and experience evenhandedly- and hopefully without rancour.
I love seeing how people operate with all the different strategies for rls relief.
I hear you about scientific fraud and the pharma industry biasing or burying negative aspects of research. It's a very real phenomenon to be sure. I also have very good knowledge of the shenanigans that pharma corps get up to. My first wife was a senior rep for Scherring-Plough the giant German drug company. There's absolutely nothing ethical in their "ethical" business models.
However - one or even 10 pharma corporations do not make up the global scientific community. I can say that with some confidence having worked for many years as a professional scientist in a large hospital.
Any way back to our original discussion - I agree with you that the manufacturer's recommended doses are really a guide arrived at by using statistical data of a large number of people. Depending on the factors we've covered plus the usual scientific hurdles of teasing causation out of correlation ~ it is up to us with our individual variation to discover which dose is right for us.
Then by sharing our personal experience with others who have similar symptoms - although the causes may differ - we can fine tune our experiments taking the additional anecdotal evidence into account.
Although I've experienced these bedtime "RLS" symptoms for at least 30 years...I'm still not 100% certain that they fit the classic diagnostic criteria. I don't have any associated pain aside from minor gastric distress (which has been investigated with no abnormalities detected) - My leg involuntarily jerks rhythmically every 15 -20 seconds - not so much an uncontrollable URGE to move it. Unless that's the definition of URGE :o)
I don't know how others experience their actual leg movements.
This is a good question to ask:
How DO people in this group experience their RLS??
I've talked before on this site about my concerns that many cases of rls are not in facr really rls but rather other conditions.
Such as Peripheral Neuropathy , MS and various autoimmune conditions and reactions to spinal surgery. Also- that rls post surgery is in fact withdrawal symptoms from the opiates given post op.
Your question is very valid and would make the basis of questionnaire.
Main challenge is defining "pain" and other aspects.
I should know better... my wife is Thai and a Buddhist ~ but to be honest have never heard that one b4
Certainly would help get us all on the same page with our ducks in line if we could all agree on at least basic criteria for this RLS thing.
You mention the opiate WD factor and my personal hunch is that over 40 years of on & off benzo use has created this abdo-leg jerk connection. Whether or not it is the same thing experienced by the majority of peeps with the RLS diagnosis is still to be seen. That I have responded positively on 4 separate nights to the low dose of half the 0.25 mg tablet does suggest that dopamine is involved somewhere. Whether it's in the Striatum region of the Basal ganglia nuclei of the forebrain is another thing.
How do you personally experience 'pain' and restless legs?
ps: Any ideas on what questions need to be asked on a questionnaire?
My rls has been around for as long as I remember- I'm 70 yrs now. It would have been triggered by raising agent in foods -biscuits especially.
It would consist of not being able to sit still from the tickly feeling in my feet- a need to walk , stretch or move. I always got in trouble as a child for sitting on one leg under my bum- I've heard others relate the same??
I was always able to control it by watching food intakes- and got to be known as a very 'picky' eater.
After major spinal surgery the rls went into overdrive- after coming off opiates. Thats why I think that is a major source of current RLS post op.
Someday I may get the courage to test that one.😢😡😱
Thanks for clearing that up about your RLS leg movement - I take from what you're saying that there's some kind of unpleasant sensation in your feet/leg or both actions combined and you just HAVE to voluntarily move it. Is that correct - or - does your leg jerk in response to the sensation.
My problem originates with discomfort ~ usually in my upper left abdominal quadrant (where the stomach is) However - it's not acid reflux as both antacids and proton pump inhibitors have zero effect on the discomfort. Also checked out with an endoscopy. Occasionally the discomfort moves around and can even originate in the intestinal region - making me suspect bloating - but Simethicone - a very good gas mover - also has zero effect.
All that taken together with my history of the symptoms and my chronic benzo use over 40 years leads me to conclude that it's probably some kind of GABA receptor involvement.
Are you still using some form of opiate to control your symptoms? Is that what you're alluding to about testing something?
Your trepidation about having an opiate holiday is very understandable ~ as you say you had some major spinal surgery in the past with some effects upon RLS. Although not an attractive vista - usually our anticipation of something is far worse than the actual event.
It sounds as though you'd really like to get off the opiates - even for a holiday. If you are able to use some effective substitutes to enable a transition or taper off of them - it might be well worth your while asking your Doc for some advice.
Going by these criteria - My common factors are bedtime and a jerky leg. Not exactly a good fit - however - I do respond positively to the dopamine agonist - so who knows?
Diagnosis
Four essential diagnostic features of RLS were developed through a consensus conference at the National Institutes of Health in 2002 in conjunction with the International Restless Legs Syndrome Study Group (IRLSSG) (Allen et al 2003):
(1) A strong urge to move the legs, usually associated with uncomfortable sensations in the legs
These sensations may be characterized by patients as vague, indescribable sensations to “creepy-crawly” feelings to irritating, painful symptoms. Sometimes the patient is unable to describe the symptom of leg discomfort and simply says that he or she has an urge or need to move the legs. These sensations are rarely found in the arms and trunk.
(2) Symptoms that start or become worse with rest
Periods of recumbency, sitting, and rest, or situations in which leg movement is restricted can initiate or exacerbate RLS. For example, theater or airplane seats can be almost unbearable for a patient with severe RLS.
(3) A temporary or partial relief of symptoms with movement, such as stretching or walking
Almost immediate alleviation of symptoms typically occurs with movement. However, this relief typically lasts only a few seconds to a few minutes, and prompts the RLS sufferer to repetitively flex and extend his or her legs or walk for short periods of time.
(4) A worsening of symptoms in the evening or at night
RLS does have a circadian component; the symptoms frequently worsen as bedtime approaches.
When on dopamine agonists, I get the involuntary jerking movement every 20 seconds or so IF I missed a dosage due to surgery, vomiting, or forgetfulness.
Prior to any medication and once again now that I have weaned off all meds, the RLS has returned to more of a squirming movement that for me is preferable to the jerking by a long shot--I can at least sit down.
FYI I had the help of a neurologist in getting off all drugs. Have recently started to experience aching legs which isn't severe--just annoying. No more drugs--too many side effects
Thanks for that input. From the response that I received from Dr B of rlshelp.org yesterday - it sounds like you may have some form of Periodic Limb Movement Disorder (PLMD)
The involuntary periodic 20 second twitch/jerk is probably a main criterion for the different diagnosis from RLS.
From my reading - dopamine agonists CAN induce secondary PLMD.
I'm with you on the drug-free existence. I've just gone through over 9 months taper off of a benzo and I believe it has ALWAYS been the benzo at the root cause of these symptoms. Oddly ~ benzos are also known to cause secondary PMLD and then they are prescribed to treat the symptoms they've induced. Crazy!
Do you have any links to those research papers. I can digest the scholarly peer reviewed original research stuff. If you have them I would appreciate thanks
Sure. May that wait until tomorrow, though. I was just putting question marks, as I have been taught in my scientific training, and kept in doing during my -still continuing - scientific work as a biologist. And I sure DO appreciate the experiences given here. I read nightdancers response with great interest. I cannot stress how valuable all given information on this forum is to me, and not only as a patient.
I have a few papers downloaded. By far haven't read all there is about RLS )only just beginning). But I'll have to look which ones are relevant in this respect and post the DOI's here later. Will that work for you? Otherwise I'll give the proper references (list of authors, year published, title, journal etc).
Thanks for that Lotte - any info you can give would be greatly appreciated. I just wrote a rather long reply to Madlegs1 above - that covers some of my concerns in more detail.
The nest I can give you now is a review paper published Sept 2016. I find it rather comprehensive, including an overview of things that have been associated with RLS as well as the various treatments and their pros, cons and developents in views about them. The list of references will guide you to most of the relevant underlying work - as usual.
Also, a shortcut, as I had no time today to delve into the papers I have collected. And I will be away for the next few days.
Sergi Ferré, Christopher Early, Seema Gulyani, Diego Garcia-Borreguero (2016) In search of alternatives to dopaminergic ligands for the treatment of restless legs syndrome: iron, glutamate, and adenosine. Sleep medicine 31: 86-92.
I was only able to access the Abstract with the link. However - I'm able to get to most research papers using the Nerd's Pirate Bay of scientific journals. Millions of research articles can be accessed this way if you are not fortunate to have a University or other backdoor key
Sure ~ fire away with your questions - I'll do my best to help answer them or at least point you in the right direction if I can't.
Cheers
Doc
Edit:
The article I have is an early acceptance from August 2016 & may have been revised. Your link refers to a March 2017 Volume 31, Pages 86–92 published date.
If you think the later revision would be better ~ I wouldn't mind if you could get a copy of the March 2017 pdf -
Hi Doc, I think it is the same. The final March 2017 published date is the "printed" (old fashioned) one. That is the one I have. I made a mistake in the year when I copied authors, year, title etc by hand.
It got already publushed online on Nov (not Sep as I remembered), and indeed was accepted August 2016. Hence my mistake. And hence the apparent but not actual differences.
Thanks for de scihub link. Very interesting. The uni's do not have access to all journals, it depends on their subsriptions. That is still the same as in the old days.
Obviously if it works for docunday that's great. It is however worth his knowing about the dopamine yo-yoing in case it becomes a problem for him. The beauty of this forum is the non-prescriptive, non judgmental nature of the exchange of information it facilitates. Also the amazing support.
Thanx Nightdancer - I have taken the dopamine yo-yo factor into consideration. Any how - I've taken half of a 0.25 mg tablet on 4 nights now with good effect. So for now - that argument is academic.
The last few mornings - I woke with a slight headache - it may be related to the drug - will monitor that as it may fade away as my body adjusts.
It's great to have such knowledgeable people such as yourself as resources in addition to the casual contributors.
Thank you to everybody who replied. I'll certainly be paying close attention to my doc about how to take the drug. Appears to be a consensus that regular dosing is necessary. As I'm responding well to such a low dose for now - I guess that it wont hurt to take it before bedtime - at least until I get to speak to my doc.
If anybody is prescribed Pramipexole - I have been informed by my physician that I can safely take it on an "as needed" basis.
I've also found at least one reference to confirm this online:
Apparently aside from Parkinson's Disease and RLS pramipexole is also used as an antidepressant. I'll search for any other sources that confirm this PRN regimen.
Pramipeoxle is usually taken at night because it can cause fatigue. However, it can be safely taken during the day if you don’t have trouble with fatigue on it. The doses can be divided throughout the day or taken all at once. When used for depression, the dosage tends to run from 0.5-1.5mg per day.
When used to treat restless leg syndrome the dosage runs from 0.25-0.75mg.
It can be taken as needed for restless leg syndrome, but should be taken daily for depression.
UPDATE: Just spoke to my pharmacist and had a good discussion about pramipexole.
His verdict - it's safe to take PRN
As the half-life is fairly short (around 8 hours) daily dosing is not necessary to maintain a certain plasma concentration...which is the usual reason for taking a drug on any regular basis.
I also quizzed him about any dopamine fluctuations that may occur from PRN use and in his opinion he didn't think it would be significant.
As a former neuroscientist - I can't think of any reason why dopamine level fluctuation in this regard would be a problem - however I concede that I've been out of the field for over 20 years and my memory isn't that great lol
Hope this info helps anybody else who may be wondering about daily dosing if their symptoms are relatively mild and not present every night.
Thanks to all who gave their advice - I appreciate any input or thoughts.
Found another situation where 'as needed' basis was given the all clear by the medical reply in rlshelp.org/rlscomp40.htm
Sent: Wednesday, March 27, 2002 12:53 AM
Subject: As needed use of Mirapex?
I hank you for your website. I have learned a great deal about RLS from fellow suffers and your medical info. My RLS is not too bad. I do get up several time each night from it. But, I have accepted this as part of my life. I would like to take Mirapex on an as needed basis when I have to sit for any length of time for any of the following situations:
- flying
- movie or show
- restaurant
- long meeting
- lecture
- dentist
- a medical procedure such as laser eye surgery
Is it ok to only take Mirapex on an as needed basis? Are there any drawbacks to doing this other than having to contend with daily RLS and its symptoms? I do not want to become too dependant on such a powerful medication that may have a negative effect a few (or more) years down the road. I also do not want daytime sleepiness. Again, thank you for your website.
Martin A.,
NYC.
Medical Reply
Mirapex has been used successfully on an as needed basis. There is no reason why it cannot be taken about 1-2 hours before situations where RLS worsens. There are no long term problems noted with using Mirapex and sleepiness mostly occurs at higher doses (more than 12 tablets per day).
I came across a person who was using oxycontin like yourself and was having a break - I'll see if I can track it down & post it for you. May give you some ideas.
I emailed Dr Buchfuhrer yesterday to ask for his opinion on intermittent dosing of Dopamine Agonists. I said to my knowledge they should be taken on a regular basis. This is his reply
"You are partially correct. Typically it is so much easier (and requires less medication )to prevent RLS symptoms rather than waiting to treat active symptoms. That being said, for patients with intermittent RLS (who don't typically know when they are getting symptoms ),short acting DA USED to be on the RLS treatment algorithm. In the more RECENT one (2013),we DROPPED short acting DA from the algorithm for as needed use. However, I have patients who do use it on as needed basis and seem to do well (a small group of patients ).I also have patients who will take a DA before a long plane or car trip (before symptoms start )and that seems to work quite well ) with no concern of augmentation due to intermittent usage.
The other issue is that some patients need to slowly increase the dose until they reach an effective dose (due to side effects ) and then intermittent DA therapy would not be appropriate.
Thank you for going to that trouble Pippins - I appreciate that
I think that for myself - I probably don't even have a classic diagnosis of RLS from the deeper reading I'm doing. However - there's definitely some overlap and the dopamine agonist (pramipexole at the low dose of 0.125) DID stop my symptoms . Although the drug also worked over an hour after going to bed and the symptoms starting - which most people then don't get that relief. So it's some related form of RLS possibly a cross between RLS and Periodic Leg Movement??
Also my symptoms are the result of benzodiazepine WD ~ I am pretty confident of that. Without getting too technical - there's a relationship between GABA & dopamine. Benzodiazepine drugs act on GABA receptors - so it's not too surprising that the dopamine agonist does help me.
Thanks again for your research & I'm sure others who read this thread will get a lot from it
Cheers
Doc
My suggestion would be for you to email Dr. B . and put to him your what you have said to us, if anyone has a answer it will be Dr.B.
It appears that Pippin has done just that and Dr B's reply is about 2 comments up
Yes i read pipps comment. But you seem to have some unanswered questions that you might want an answer too. Your question of not having a classic RLS.. and your question of the cross over between RLS and PLMD. ? Just a suggestion, and what he replies back to you could help some one else.
I was unsure of my RLS diagnosis. My physician didn't actually specifically state RLS - the prescription for the pramipexole was probably a trial to see if it helped - which is does rapidly... I've taken 0.125 mg on 4 nights AFTER my symptoms began and each time I was able to go back to bed & go straight to sleep.
I MAY have Periodic Leg Movement Disorder (PLMD)
I contacted Dr B at rlshelp.org and this was his reply.
ps: Also for mild intermittent RLS/PLMD - he has stated that in another communication ~ that 'as needed' (prn) dosing should be safe.
mjb
4:54 (2 hours ago)
You most likely do not have RLS but may have PLM. Those are involuntary leg jerks (sometimes even including the arms) that occur at rest and especially when in bed. Pramipexole works extremely well to ablate the PLM. However, with time, the pramipexole may worsen the PLM or even trigger the emergence of RLS.
Hope this info is useful to somebody
Cheers
Doc
For completeness this is my letter to Dr B
I'm a 58 y/o male. Very recently prescribed 0.25 mg/night pramipexole dihydrochloride monohydrate Brand name Sifrol (Boehringer Ingelheim) Apparently has an equivalence of 0.18 mg pramipexole
My question relates to whether or not I have Restless Legs Syndrome or Periodic Leg Movement Disorder or a some kind of cross between them. My symptoms are intermittent. When they occur it is almost always on retiring for bed & within 20 minutes I get a mild upper left quadrant ~ stomach or abdomen discomfort which seems to trigger a nerve impulse usually down my right leg - however - it can also just affect the left leg occasionally resulting in an involuntary leg jerk twitch. (rhythmically every 15 -25 seconds)
From reading the criteria for RLS - I'm a bit confused as to whether or not my leg jerk/twitch is the same as the one described as an URGE to voluntarily move my leg.
It is a totally involuntary jerk. It is severe enough to prevent sleep onset.
I've had investigations to rule out anything sinister in the GI tract
Antacids - proton pump inhibitors and simethicone have little to zero effect on the abdominal discomfort or the jerk.
However - the confusing part is that for 4 out of the last 6 nights that I had symptoms... after the onset of symptoms - I took 1/2 tablet (0.125mg) pramipexole and it had rapid effect in ceasing the symptoms.
I've had these intermittent symptoms for around 30 years with no real increase in frequency or severity.
I have recently completed a very slow 9 month taper off of intermittent prescribed benzodiazepine use. (was on clonazepam 4mg/day before taper)
My thoughts are that the RLS? symptoms are somehow linked with the chronic intermittent benzo use.
Any thoughts would be much appreciated.
thank you
Hi, DocUndy, VERY good reply back from Dr. B but i knew it would be. So, that has now answered i hope your queries. I HOPE that taking the Pramipexole doesnt trigger the RLS off like Dr. B has mentioned.
Yes he was very prompt with the response too ... very good man.
With this leaning towards PLMD - I'm still not sure of the situation regarding taking the pramipexole with this new info.
As I've had these symptoms over the last 30 years alongside intermittent prescribed benzo use - and seeing as the symptoms got worse when the taper off of them ended - it MAY be a far better treatment to go onto a daily low dose benzo and adjust the dose as necessary.
For all I know - the times that I got the symptoms could very well have been when I was off of the benzos??? It's a strong possibility. I just assumed the symptoms were the result of benzo withdrawal.
The thought of worsening the symptoms OR giving myself a new condition of RLS with pramipexole is not an attractive scenario.
I'll play this by ear & keep updating the group. This info may be helpful to others.
Thanx for your input
You can take a low dose of a strong pain med like i mentioned somewhere in this thread. And they can be taken as when needed. Pain meds dont augment either like the DA's can do. I dont suffer with PLM so i am just assuming the pain meds would work for PLM as they do for RLS. Hopefully someone can give some input on that.
Dr. B always replies back promptly usually 24hrs-48hrs . Many members on here and other groups have emailed him and got his expert advise, but always remember he is not your doctor and gives the advise based on what you tell him. But members who take his advise very rarely regret it. Just as we on here give people our experience and knowledge of RLS and meds etc. as many doctor's dont know as much as the person who is suffering, but we usually tell members to discuss anything we tell them with their doctors'
Thanx for the suggestion. My wife has some codeine phos 30mg + paracetamol tabs that are for moderate pain. I could give 2 of those a try next time I get the symptoms. At the moment they occurred the last 4 out of 6 nights - still more frequent that usual. Before the taper - I'd get them a few times in a blue moon. With retrospect - probably during the times I was off the benzos.
The benzos have their own nasty little secrets when used even as prescribed over long periods However ~ I can handle those better than the prospect of worsening these symptoms or getting full blown RLS from pramipexole. Not to mention the nice little things such as weight gain ~ compulsive shopping & gambling ~ falling asleep etc. A case of better the devil you know.
I might even seek out a local sleep clinic here - there's one at the university that I studied years ago. They'd be well up on this stuff. This group is a great way to share our personal journeys and valuable information and support from people who know what it's like to suffer these things on a regular basis.
EDIT:
Now I have a clearer idea of what may be bothering me - I've discovered that PLMD can result from guess what??
Benzo withdrawal. Not just PLMD but RLS too hmmmm.
Interesting ... Still reading reading -
Secondary PLMD has many different causes, including the following.
Many of these are also causes of restless legs syndrome.
Withdrawal from sedative medications such as barbiturates or benzodiazepines (such as Valium)
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