Trust in the Healthcare System and Choice of Home Dialysis


#1

I suspect there is a relationship between the physician’s trust of the patient to do home dialysis and whether he/she offers patients the option to do home dialysis, especially home hemodialysis.

What is the relationship between trust in the healthcare system and a patient’s choice to do home dialysis? Are those who do home dialysis more or less likely to trust the healthcare system than those doing in-center HD?

I wonder if this might be a subject for future research. What do you think?


#2

I’m not sure that I have less trust, but I certainly have more information than many doctors and especially many patients, and did want to have control over my own treatment.

I do not particularly “like” our health care providers and am very aware that there are many that do not like being questioned and do not like a patient having more information than they do. I also am aware that many lump all patients into one pot, ie all dialysis patients … when in fact we are all different. They many be very knowledgeable but when it comes to working “with” patients there are few who are good at this.

I love my dialysis unit, but honestly don’t have a lot of faith in my nephrologist and feel that I have to be a very strong advocate and not put all my faith into thinking he will do what is best for me.

Cathy
self home hemo 9/04
PKD


#3

My ‘sense’ or compacted-life-experience is that: Physicians who were nursed from conception by the Pharmaceutical Industry are ‘ill’ equipped to make judgments on anything that is outside their skill-set or tools they have been given to navigate the Healthcare industry with. Look at the sponsors of the medical schools in this country; most of you will know or guess that it is overwhelmingly the Pharmaceutical Industry. That physicians get in their entire medical training as little as none and in many cases as much as 2 or 3 hours of nutritional education and can then turn around and advise a patient on healthcare decisions is incomprehensible to me… And their exposure to alternative therapies is most often a skeptic’s review of how to dissuade patients from straying from the medication ‘fold’. Pill-pushers is an apt label.
The amount of patients that die in U.S. hospitals, yearly, from drug interactions and physician error is so huge, hardly anyone will believe it when faced with it.

Here is one site, but search and find your own.
And yet the AMA doctors on the FDA board are able to send agents out to intimidate the competition, the herbal industry, whose profits are effecting the Allopathic(modern medicine) bottom line.
Having the FDA oversee the Alternative Health Industry is ludicrous.
It would be like a politician nursed by the oil industry sitting in judgment over the best alternative fuel model especially one that can’t be controlled for profit… oh wait, I guess that IS who does that…

Here is an interesting number:
1,760,100,000,000. This number should get a $ in front of it but I think it is too obscene a number and too big to understand in any but the most intuitive ways. It is the annual Gross Domestic Product of the U.S. Healthcare Industry in 2004. All of us on this board are an (some more than others) integral part of that Industry. The decisions we make and the way we look at interactions in healthcare affect that number and that number is hugely important to a lot of powerful ‘people’.

I also question whether other professionals in the Healthcare Industry have an understanding of the role that their skills were created to play for the forces that control this society. As much as we would all like to believe we live in a soup and are free to swim around under our own free will and volition, the soup was made and ordained as to it’s content, temperature, depth, number of peas and beans and alphabet letters and what you think and feel about all the other flotsam and jetsam. And while some have a sincere desire to heal the sick, aid the afflicted, ease the hurt and burden of people, their tools were devised by ‘people’ who took advantage of that nature to have emissaries that would work their will and their program for profit and power.

I have been on Hemo Dialysis for most of 25 years. I am not what some would call a nice person. I don’t have the skills or the stomach. Although I think I am a very loving person, the two are not mutually exclusive in my reality. Part of that lack of niceness is intertwined with my survival skill. Someone in N.Y, I cannot remember his name, who studied long term Dialysis survivors, said “Longterm Dialysis survivors don’t get headaches…they give them.” I have sometimes been at the wrong end of the Dialysis Establishment’s gunsight, i have been thrown out of a couple of units!!!
I was once ‘thrown’ out of the Charleston Dialysis area, and I was a HOME patient!! Two ‘competing’ Dialysis companies, over 20 clinics and 40 nephrologists and I couldn’t get one to accept me as home patient, I even owned my own dialysis machine and could not get supplies or service, because the most powerful nephrologist said no and no one would or could buck him. Some ‘folks’ with power do not take to being confronted, in even the most gentle ways. That though is a story for a nice fireplace and warm tea…maybe we could get a forum like that sometime.

People like me are often called Conspiracy Theorists. It makes me feel like a comedian because I think it is so laughable that the ‘Conspirators’ can debunk the ‘Theorists’ (that catch on to all the agendas, plans, methods of control in a very regimented society) and point at them and call them ‘nuts’ like in a school playground, when for hundreds of years these generations of ‘Conspirators’ have been compiling volumes of dialogue on the way to manage and control a population for the sake of power and profit

Finally to sum it up, I think the foundation of the Healthcare Industry is predicated on the unspoken concept that “Wherever there is suffering, there is profit.” That in the relief of suffering there is bottom line profit and in cure there is none; I do not believe there will ever be a cure for diabetes just better treatments as there will never be cars that run on water till the oil companies own all the water. Likewise in death: no profit, no bucks…so no euthanasia: they will not let you off the hook that easily.

. I have decided that they can have what they want. While I believe we should all be knowledgeable, informed and aware of the ‘business’ we are in and who’s running it and why, I am content to let them have the ‘spoils’. They will have my money one way or another but never my trust. I will not. Then of course there is the ‘Spiritual spoils’ and THAT GDP but that is quite another discussion, probably for another board…(talk about HOW deep the Rabbit Hole goes…!)

Guillaume


#4

TRUST is a big word…

-without trust we wouldn’t have completed homehemo training…

-without trust we wouldn’t have made the choices to do homehemo…

Like bad apples and good apples there are bad doctors and good doctors…all of them with their own beliefs and theories…but how do we find the right doctor that we can build a sound relationship and trust? We simply rely on other patients, friends, and trustworthy people to refer us to who’s good and caring.

And if you’d ask, what kind of patient would go through this process of finding a trustworthy doctor or clinic?..the patient that excercises his/her right…the one who has a voice…


#5

Gus, not everyone has the choice to pick and choose doctors, especially those of us with kidney disease as we can’t simply change insurance. I am with Kaiser, there are a limited number of nephrologists available and they require that you use one near you who would cover the dialysis unit you would use. It is possible I could change to a different Kaiser further away now that I am on home dialysis. If I were on dialysis there is only one nephrologist I could use that would support the unit I chose to go to.

Cathy
self home hemo 9/04
PKD


#6

But you are already at home doing dialysis right? So that means there was trust between you and your provider and those who are giving you support services?

Unless your not happy with them then you would tell your doctor that your not too happy with him/her? You would maybe report a grievance report and perhaps Kaiser would switch you to another doctor that matches your needs?

I really think you can switch to another doctor, but there needs to be a good justification…not just am tired and bored with this doctor and now I want a new one…


#7

I am happy with my home dialysis unit, but not with my nephrologist. I know the others available and they would be no better so I tough it out and have my unit advocate as much as they can.

Some issues I have with my neph:

He is unconcerned with my low b/p and high heart rate while my unit tells me I am at risk of losing my access because of them

He is unconcerned with high calcium levels, as high as 10.3, has never done any kind of bone density testing, even base line, to look for bone deterioration (doesn’t believe it is a problem since I can normally keep my phos/calcium product normal even with a PTH of almost 1000)

He has never run any kind of heart tests other than EKG’s and chest xrays to have baselines to compare with over the years

Will not prescribe any kind of sleeping pill in spite of many nights where I can’t get to sleep until 4am.

Will not prescribe anything for restless legs except some antidepressent that didn’t work.

I have many more examples but I think you get the idea. The thing I like the most about my neph is that he finally went along with my doing home hemo. I am his first and only home hemo patient, even after a year of being at home.


#8

#9

Hi y’all,

Cathy wrote:

He is unconcerned with my low b/p and high heart rate while my unit tells me I am at risk of losing my access because of them

Low BP is a risk for clotting in an access. Keep working with your clinic to be sure it doesn’t drop too low. Are you getting enough fluids for the type of dialysis you’re doing?

He is unconcerned with high calcium levels, as high as 10.3, has never done any kind of bone density testing, even base line, to look for bone deterioration (doesn’t believe it is a problem since I can normally keep my phos/calcium product normal even with a PTH of almost 1000)

Yikes! Secondary hyperparathyroidism (this happens when the parathyroid glands grow so big that they can’t shut off) can make your bones and joints ache, and can weaken your bones so they break easily. This is usually treated, as Gus noted, with a form of active vitamin D (e.g… Hectorol, Zemplar…) phosphate binders (do you still need these?) and with the newer drug Sensipar. It would be a good idea to talk with your dietitian about these–often the dietitian has “standing orders” from the doctor that he or she can act on, or the suggestion may be more credible coming from the dietitian than from you as a patient (sad to say).

He has never run any kind of heart tests other than EKG’s and chest xrays to have baselines to compare with over the years

It’s my understanding that an echocardiogram is an important baseline test for people in dialysis–someone please correct me if I’m wrong about that. Blood vessels anywhere in the body, including the heart, can become calcified in people on dialysis who have used calcium-based phosphate binders, and it would be helpful to have baseline info on this. Nocturnal home hemodialysis, at least if done 5 or 6 nights/week, can help dissolve calcium deposits; I don’t know about daily.

Will not prescribe any kind of sleeping pill in spite of many nights where I can’t get to sleep until 4am.

The “Staying Active” module of Kidney School includes a long section on sleep (including restless legs syndrome and treatments for it) that you may find useful. http://www.kidneyschool.org. You can print off the Personal Action Plan and bring it to your doctor–perhaps that would help?

When you’re as on top of what you need to do well as you clearly are, it must be terribly frustrating to not have your nephrologist on board to help you.


#10

Are you getting enough fluids for the type of dialysis you’re doing?

Definitely, I need to take off 2500-3000 daily. Looking at the charting it also doesn’t seem that my dry weight is the problem, I have lowest b/p and highest heart rate on days my weight is high or low, we can’t find a common factor yet. Good news again is the last two days have been good. I am eating more sodium (I tend to have a sodium of 132-134 in spite of running at 140).

Yikes! Secondary hyperparathyroidism (this happens when the parathyroid glands grow so big that they can’t shut off) can make your bones and joints ache, and can weaken your bones so they break easily. This is usually treated, as Gus noted, with a form of active vitamin D (e.g… Hectorol, Zemplar…) phosphate binders (do you still need these?) and with the newer drug Sensipar. It would be a good idea to talk with your dietitian about these–often the dietitian has “standing orders” from the doctor that he or she can act on, or the suggestion may be more credible coming from the dietitian than from you as a patient (sad to say).

Yes all of that makes sense, but Kaiser will not cover Sensipar or oral Hectorol, I am not allowed to give hectorol during dialysis so that leaves me with Calcitriol which raises my calcium, so when my calcium gets too high they take me off it and then my PTH soars, then they put me back on the Calcitriol until my calcium gets above 10, I am currently on my third round of this. I do take Renagel with meals which keeps my phosporus under control.

It’s my understanding that an echocardiogram is an important baseline test for people in dialysis–someone please correct me if I’m wrong about that.

That is my understanding too, and my clinic wishes they had baselines but can’t order them.

The “Staying Active” module of Kidney School includes a long section on sleep (including restless legs syndrome and treatments for it) that you may find useful. http://www.kidneyschool.org. You can print off the Personal Action Plan and bring it to your doctor–perhaps that would help?

I have read that and do what I can. He will allow me 8 valium a month so I take one of those when my rls is too bad and at least it lets me sleep. And yes, it is difficult, but luckily I look at it as a sort of “game” where I do what I can do get what I can. I’ve learned if I can suggest something and then wait a couple of months for it to become “his” idea that seems to work. I also have my unit working on him about a few things and am hoping to maybe see some results. I didn’t really mean to make this thread about me, I was just responding to the idea that everyone can find a great and knowledgeable neph, not everyone can, and it makes it even more important to be knowledgeable and be a part of your treatment team.[/quote]


#11

This is something you can also workout with your dialysis clinic head nurse whom also have power to make changes with Doctor’s approval or on your okay…

Not in my case, they have the power only if it is part of their “protocol”, such as giving me iron. My neph does believe in it since I have normal HCT and HGB (he says there is no such thing as iron deficiency without anemia) but I get it anyway because it is part of my units protocol. They can’t write prescriptions.

so we’re doing a little study here and some lab analysis which will determine whether less dialysis will solve the problem without hindering lab results…so far it’s been 3rd day and look like my BP is improving…

Interesting, maybe I’ll have my clinic contact your clinic.

Have you spoken to your dietician? Were the suggestions by your dietician helpful? …your PTH was never sliced? You must be on some form of vitamin D?

Of course I’ve talked with my dietician, unfortunately we changed dieticians in the middle so it took a couple of months to convince her that I am a compliant patient and knowledgeable about foods so that she believed it wasn’t diet related. I’m not sure what you mean by PTH being sliced. I take Calcitriol until my calcium gets high then must drop it until it drops, it is a vicious cycle.

to prolong the lives of people on dialysis we must stay away from as many drugs we can, especially drugs that are risky for dialysis patients. We’re a high risk group here…

I do agree and the only prescription drugs I take are lovastatin (to lower my cholesterol which went up when I started dialysis), calcitriol, paxil and renegel. I take a few valium a month to sleep and every so often a vicodin to combat my kidney pain due to PKD.

Cathy
self home hemo 9/04
PKD


#12

#13

Even if your iron levels are normal? Have you tried iron orally?..I use to get iron intervaneously but now do it orally 3x a week upon my request and not the Doctor’s…are you getting EPOGEN?

I take 3 iron tablets daily and have gotten iron once a month through the IV for the last 3 months and still have low iron and sats. I also take Vitamin C with my iron to try to help with absorption. I do not take EPO as my HBG and HCT are in the normal range.

PTH sliced, it’s a surgery where they slice or remove your PTH glands…(I had mine removed in my early years)…I don’t take any special vitamin D…all I take now is just Calcium, it solves most of that problem your having. Also keep in mind that Sensipar as Dori mentioned is quite very good, better than Calcitrol which doesn’t cause sudden drops nor increases of calcium like Calcitrol does…if your Doc can prescribe Sensipar that would be good, give it a try…last resort would be the PTH surgery

No, I haven’t had surgery and since my neph isn’t concerned by my high pth and doesn’t believe that bone scans are of any use I doubt I will be scheduling it soon. The ONLY oral vitamin D that Kaiser approves is Calcitriol, my unit has been screaming for Sensipar for me for months with no avail, I may try filing for an exception but I think that would really anger my Neph. I cannot take calcium at all due to my high calcium without any in my diet.

to prolong the lives of people on dialysis we must stay away from as many drugs we can, especially drugs that are risky for dialysis patients. We’re a high risk group here…

I do agree and the only prescription drugs I take are lovastatin (to lower my cholesterol which went up when I started dialysis), calcitriol, paxil and renegel. I take a few valium a month to sleep and every so often a vicodin to combat my kidney pain due to PKD.

Back when I was teenager and on dialysis I spent 4 years with depression and of all of those years I refused any anti-depressant drugs…all I did was to get active and spend time doing things…whether school, hobby, or projects around the house…i use to have sleep problems and one thing I did to solve it was my diet…no more caffein products like soda, coffee, chocolate, nor alcoholic beverages…but most important is that you try keeping active…perhaps stewardship at your local church, maybe join a local charity club, or even take some piano classes but spend time on something you like to do or want to do…even if it’s joining an online women’s video game group…8)

I’m very happy that that worked for you, I do not experience depression, Paxil is for anti-anxiety, a problem I have had my entire life. I love my Paxil as it allows me to not obsess over things and makes my life much easier to tolerate. My sleeplessness has also been a life long battle, exaberated greatly by increasing restless leg syndrome. I keep up with a very active 11 year old son, I am a single mom, I volunteer a lot at the school and in the community, run a chess/math club out of my home on the weekend with 9 boys, own my own home etc., of course in addition to 6 x a week 4 hours a day of dialysis at home., oh yes, and my son is now on half day independent study at home which I supervise and help with as he needs a bit more academics than he can get in the regular 6th grade.

Cathy


#14

Dori writes:
Yikes! Secondary hyperparathyroidism (this happens when the parathyroid glands grow so big that they can’t shut off) can make your bones and joints ache, and can weaken your bones so they break easily. This is usually treated, as Gus noted, with a form of active vitamin D (e.g… Hectorol, Zemplar…) phosphate binders (do you still need these?) and with the newer drug Sensipar. It would be a good idea to talk with your dietitian about these–often the dietitian has “standing orders” from the doctor that he or she can act on, or the suggestion may be more credible coming from the dietitian than from you as a patient (sad to

There are cases where in lowering the pth with Zemplar, the pth becomes over-supressed and the ratio drops too low. The patient then becomes adynamic. Cal Phos may be in range while pth rises too high again. Patient can not take active vit. D or Sensipar until the ratio comes back into range. Is this discussed in Kidney School? Anyone have this condtion?


#15

Cathy wrote:
He is unconcerned with high calcium levels, as high as 10.3, has never done any kind of bone density testing, even base line, to look for bone deterioration (doesn’t believe it is a problem since I can normally keep my phos/calcium product normal even with a PTH of almost 1000)

Can someone educate me on the necessity of having bone density testing?
As Cathy said, if cal /phos is normal despite an elevated pth what does that signify?


#16

Cathy writes:

He has never run any kind of heart tests other than EKG’s and chest xrays to have baselines to compare with over the years

What type heart tests are you referring to? I have never read where this is done. Do most units provide this?


#17

Dori writes:
The “Staying Active” module of Kidney School includes a long section on sleep (including restless legs syndrome and treatments for it) that you may find useful.

I experienced a mild, but irritating, form of RLS when I was first on dialysis. At the time, I was on re-use and there were a lot of errors in figuring my dw and goal. Once I got off reuse and learned to figure my dw and goal correctly, I never experienced RLS again. I’m sure there are other causes, but this was the cause in my case.


#18

Hi y’all,

Jane wrote:

I experienced a mild, but irritating, form of RLS when I was first on dialysis. At the time, I was on re-use and there were a lot of errors in figuring my dw and goal. Once I got off reuse and learned to figure my dw and goal correctly, I never experienced RLS again. I’m sure there are other causes, but this was the cause in my case.

That’s fascinating! Nobody knows the cause of RLS, but it is more common in people on dialysis. I never heard anyone speculate that this was an adequacy (and/or reuse) issue–when I get a chance, I’ll comb through the medical literature for that, and if I don’t find it, I’ll see what I can do to put a bug in the ear of the folks who study daily and nocturnal home hemo to see if they can add this to their research. You may well be onto something here, Jane. Thanks so much for sharing this.


#19

The following just appeared on the Yahoo dialysis_support group group and may be of interest.

Concise Review for Primary-Care Physicians
Restless Leg Syndrome

Michael H. Silber, M.B.Ch.B.

    Source: Mayo Clinic Proc., March 1997, Vol. 72

Restless legs syndrome (RLS) is a common condition characterized by
unpleasant limb sensations that are precipitated by rest and relieved by
activity. Symptoms are worse during the evening and may result in insomnia.
Most cases are idiopathic, although the condition is sometimes familial and
may be associated with a range of medical illnesses, including chronic renal
failure and iron deficiency anemia. RLS is responsive to several
medications, including levodopa, dopamine agonists, benzodiazepines, opiods,
and some anticonvulsants. A practical approach to management involves a
stepwise plan, commencing with intermittent therapy with less potent agents
for mild cases and progressing to medications with greater potency but a
higher potential for side effects.

PLMS=periodic limb movements of sleep; RLS= restless leg syndrome

RLS, a common condition, may afflict up to 10 to 15% of the population.1 It
is often misdiagnosed, and patients report a mean of 2 years’ delay in the
correct diagnosis after they have sought medical attention. Although the
condition can develop in patients of any age, about 40% of patients recall
symptoms before age 20 years.2 The symptoms tend to worsen with age but may
fluctuate with periods of relative remission and exacerbation.

CLINICAL FEATURES

RLS is a clinical diagnosis based on the history of the patient. The six
essential characteristics are as follows:

  1. unpleasant limb sensations,

  2. sensations precipitated by rest and relieved by activity

  3. compelling motor restlessness

  4. symptoms that are worse during the evening or later at night

  5. resultant insomnia and

  6. an association with periodic limb movements of sleep (PLMS)

  7. Unpleasant Limb Sensations: Unpleasant limb sensations are most commonly
    experienced in the lower extremities, especially in the calves, but
    occasionally occur in the thighs, feet, or upper extremities. They are
    usually (but not always) bilateral. The discomfort is often difficult to
    characterize, and patients often indicate that it is not pain. It is often
    described as a deep-seated, creeping, crawling, jittery, tingling, burning,
    or aching sensation. Frequently, patients report the sensations as
    indescribable.

  8. Sensations Precipitated by Rest and Relieved by Activity:
    The unpleasant sensations are exclusively present (or worsen in severity)
    while the person is lying or sitting and are relieved, at least temporarily,
    by activity. Lying in bed is the most common precipitant, but symptoms may
    also occur while the patient is sitting, especially for prolonged periods
    such as in a theater, automobile or airplane.

  9. Compelling Motor Restlessness: Motor restlessness is associated with a
    patient’s compelling desire to move the affected limbs. Forcing them to
    remain still may be impossible and always results in worsening of the
    discomfort and occasionally causes an involuntary limb jerk. Voluntary
    activity that may be beneficial involves stretching or jiggling the legs,
    pacing the floor, or exercising, such as a stationary bicycle. Massaging the
    legs or taking hot baths may be effective alternative measures.

  10. Worsening of Symptoms During the Early Evening or Later at Night: Symptoms
    are most troublesome while the person is in bed before sleep or during the
    night. When the person is sitting, symptoms are most prominent during the
    evening and are least noticeable in the morning. This phenomenon is probably
    due to a circadian factor and does not occur only because people tend to
    rest later during the day.

  11. Resultant Insomnia: Most patients with RLS have sleep onset or sleep
    maintenance insomnia, which is clearly due to limb discomfort. In some
    patients, the symptoms are worst before sleep, whereas in others, they may
    be most severe later during the night.

  12. Association with PLMS: PLMS are stereotyped, repetitive flexion movements of
    the legs during sleep that last .5 to 5 seconds and occur semirythmically at
    intervals of 20 to 40 seconds. PLMS are common, especially in elderly
    people,4 and are usually not associated with RLS or any other clinical
    consequence. Nevertheless, about 80% of patients with RLS will experience
    PLMS, and often a sleeping partner will describe the movements. PLMS
    associated with RLS may sometimes cause arousals that fragment sleep and
    result in excessive daytime sleepiness; occasionally, PLMS without RLS may
    produce similar effects.

ETIOLOGIC FACTORS AND PATHOGENESIS

Most cases of RLS are idiopathic, but certain associated factors have been
reported. These factors include pregnancy; neurologic conditions such as
peripheral neuropathy, lumbosacral radiculopathsies, myelopathies, and
Parkinson’s disease; hematologic conditions, of which iron deficient anemia5
is the most important; chronic renal failure; folate and vitamin B
deficiency; rheumatoid arthritis; hypothyroidism; and medications such as
tricyclic antidepressants. A family history of RLS is common, and an
autosomal dominant pattern of inheritance has been suggested in several
families.

The pathogenesis of RLS and PLMS is uncertain. Various lines of evidence6
suggest that a disturbance of inhibitory subcortal pathways, such as the
reticulospinal tract, may allow expression of a normally suppressed neural
generator at the spinal cord level. Thus process may be modulated by
abnormal periphery sensory input from, for instance, a peripheral
neuropathy.

RLS may occur at any age. The condition may remain static, but about
two-thirds of patients report progression of symptoms in time. At least 16%
of patients describe remission of symptoms for a month or more.2 RLS does
not seem to predict other neurologic disease that is not evident at the time
of diagnosis.

DIAGNOSIS

RLS is usually diagnosed on the basis of the patient’s history, although
sleep studies are occasionally undertaken to identify the presence of PLMS.
In selected patients, the suggested immobilization test can be used to
measure leg movements while the patient is awake during the day. The most
common mimickers of RLS have different clinical features and are usually
readily distinguished by elicitation of a thorough history. These mimickers
include symptoms of peripheral neuropathy such as paresthesias (different
from RLS as a complication of peripheral neuropathy), nocturnal leg cramps,
fibromyalgia, and akathisia, the need to move is more often generated by an
inner sense of restlessness than by limb discomfort and is often not worse
at night or at rest.8

A limited search for a secondary cause of RLS should be undertaken,
especially if the symptoms are brief in duration or have recently worsened.
Symptoms of peripheral neuropathy, radiculopathies, or blood loss should be
elicited. A brief neurological examination of the legs should be performed.
Electromyography is not usually indicated if findings from a history or
examination do not suggest neurologic disease. In patients in whom RLS has
only recently began or has worsened substantially, serum iron, ferritin,
folate, vitamin B12, creatinine, and thyroid-stimulating hormone
concentrations should be determined.

MANAGEMENT

Nonpharmological management includes reduction in caffeine and alcohol
intake and cessation of smoking.

Medications that have been shown to be effective in RLS are as follows:
carbidopa-levodopa, dopamine agonists, opiods, benzodiazepines,
anticonvulsants, and clonidine hydrochloride.

Carbidopa-Levodopa: In controlled studies carbidopa-levodopa has been shown
to diminish the symptoms of RLS and reduce the frequency of PLMS. For
symptoms that are especially troublesome before onset of sleep, the usual
initial dosage of carbidopa-levadopa is one-half to one 25-100 mg tablet
(25mg of carbidopa and 100 mg of levadopa) before bed. If the main problem
is waking with symptoms later during the night, one 25-100 mg tablet of
controlled-release carbidopa-levadopa is preferable. In some patients, a
combination of the short-acting and controlled-release formulations may be
needed; others may require an additional dose of medication during the early
evening or later during the night. Levadopa should always be taken on an
empty stomach to enhance absorption. Minor side effects such as nausea and
insomnia occur occasionally, but long-term studies have shown that
dyskinesia do not generally develop.

The main complication of levadopa therapy for RLS is the development of
worsening symptoms during the afternoon or early evening, despite adequate
control later at night.9 This phenomenon, which has been termed “restless
legs augmentation,” may occur in 50 to 80% of patients, sometimes within
months after therapy has been instituted. In the past, it is often confused
with the development of tolerance to the medication, an outcome that is
considerably rarer. A recent study9 showed that the development of restless
legs augmentation correlates with two factors: pretreatment restless legs
symptoms commencing earlier than 6 p.m. and administration of a total daily
dosage of levadopa of 200 mg or more. Some physicians believe that a risk of
daytime augmentation may be decreased by administering levadopa five nights
a week and using other agents on the other two nights, but this approach has
not been tested scientifically. Once augmentation has occurred, levadopa
therapy should be discontinued, and a different agent such as pergolide
mesylate should be used. Administering additional doses of levadopa earlier
during the day usually results in further exacerbation of the augmentation
phenomenon.

Dopamine Agonists: Peroglide is a potent long-acting dopamine agonist that
clinically has proved to be effective for treating RLS.10 Because of a
relatively high frequency of minor side-effects. I do not advise it as a
first-line agent. It is especially helpful in patients who experience
levadopa-induced daytime augmentation of symptoms. Efficacious doses are
usually considerably lower than those needed for the treatment of Parkinson’
s disease. Treatment should commence with 0.05 mg before sleep, and this
dose can be increased by 0.05 mg every two nights until relief is obtained,
side-effects develop, or a dose of 0.6 to 0.8 is attained. The average
effective dose is 0.15 to 0.20 mg. Occasionally, an additional dose is
needed during the early evening. Side-effects include nausea (often
controllable with a snack), insomnia (well controlled with the addition of a
benzodiazepine), light headedness, and nasal congestion. Daytime
augmentation is considerably milder and less frequent with peroglide than
with levadopa therapy, but it may occur in 25% of patients.

Bromocriptine mesylate has also been shown to be effective in a controlled
study. Effective dosages range from 5 to 15 mg daily.

Opiods: Opiods have been shown to be effective in many patients,12 but their
use is somewhat limited because of side effects and concerns about potential
addiction. Low-potency agents such as codeine (initial dose, 30 mg) may be
useful in mild cases with intermittent symptoms. Higher potency agents such
as oxycodone hydrochloride (initial dose 4.5 to 5 mg) or methadone (initial
dose, 5 to 10 mg) have a definite role in the treatment of patients with
resistant symptoms in whom other therapies have failed.

Benzodiazepines: Benzodiazepines such as clonazepam (.5 to 2 mg), temazepam
(7.5 to 30 mg), and triazolam (.125 to .25 mg) may be effective in relieving
RLS.13 Most studies have shown that these drugs seem to reduce arousals from
PLMS rather than eliminate the movements. Concerns about their use include
theoretic potential to exacerbate coexisting obstructive sleep apnea
syndrome; daytime sedation, especially with longer acting agents such as
clonazepam; and in elderly patients, risks of falls at night. These drugs
are often useful in patients with mild or intermittent symptoms and are
occasionally beneficial in combination with levadopa or a dopamine agonist
in patients with more severe symptoms.

Anticonvulsants: Carbamazepine was found to be superior to placebo in
relieving RLS in a double-blind study,14 but subsequent clinical experience
has not suggested a high degree of efficacy.

In a recently published abstract,15 investigators suggested that gabapentin
(9300 to 2,700 mg daily in divided doses) may be effective in some patients.
A controlled trial is needed, however, to assess its efficacy more
objectively.

Clonidine: In a recent controlled study,16 clonidine (mean dose, .5 mg)
provided some relief from RLS symptoms but did not affect PLMS. Frequent
side effects were noted, including dry mouth, decreased cogitation, and
lightheadedness. Treatment should be initiated with .1 mg daily.

PRACTICAL APPROACH

Practical management of RLS can be challenging and must be adapted to the
individual patient. No single method is correct. The following suggested
approach is based on personal experience at the Mayo Sleep Disorders Center.
Dosage schedules are those discussed in the preceding sections on the
specific medication. Associated disorders should be excluded, as discussed
in the preceding section on Diagnosis.

Step One: For mild RLS (symptoms are intermittent or only mildly disruptive
to onset or maintenance of sleep), consider the use of either
benzodiazepine, such as temazepam, clonazepam, or triazolam, or a
low-potency opiod, such as codeine or propoxyphene. Often, these medications
can be taken intermittently, at least initially.

Step Two: For moderate or severs RLS (symptoms are continuous, moderately to
severely disruptive to onset or maintenance of sleep or unresponsive to
medications listed in Step One), carbidopa-levadopa is the drug of choice.

Step Three: If levadopa is ineffective, use is limited by side effects, or
daytime augmentation develops, discontinue use and institute peroglide.

Step Four: If peroglide is ineffective, use is limited by side effects, or
daytime augmentation develops, consider use of higher potency opiods such as
oxycodone or methadone, bromocriptine, clonidine, or gabapentin. Some
patients respond to combination therapy, such as benzodiazepine and
levadopa. In some patients, levadopa or peroglide can be reintroduced at a
later time after a period free of the drug.

REFERENCES

  1. Lavigne, GJ, Montplaisir, JY “Restless legs syndrome and sleep bruxism:
    prevalence and association among Canadians,” Sleep 1994;17:739-743

  2. Walters, AS, Hickey, K Maltzman J, Verrico, T, Joseph, D, Hening, W, et
    al. "A questionnaire study of 138 patients with restless leg syndrome: the
    Night Walker’ survey. Neurology 1996; 46:92-95


#20

I’ve had big problems with RLS ever since I had advanced chronic renal failure and since starting dialysis. Reduction of RLS symptoms, if not total elimination, was one of the advantages my home dialysis unit said I could expect from daily hemo, both short and nocturnal. From what I’ve read, there seems to be a lot of observational evidence of this, at least as far as daily nocturnal hemo goes. So far, daily nocturnal hasn’t eliminated it for me, but it does seem to have reduced it.

Pierre