WHAT TYPE OF RLS DO YOU HAVE?
(SDA Newsletter extract, Jan 07)
First, your doctor needs to determine what your medical needs are, depending on the intensity and occurrence of your RLS symptoms, then he or she can use the Algorithm’s treatment recommendations. The Algorithm, is a description of 3 levels of RLS and the recommended treatment. It was created by the RLS Foundation's Medical Advisory Board, and is published on our website: www.rls.org.au in the medical practitioners section, for your doctor to use as a reference.
WARNING: Some of these medications may not be suitable for people with other medical conditions eg: sleep apnea sufferers should not take benzodiazepines.
It is vital that you consult your doctor, advising him or her of any other pre-existing conditions, before you plan your therapy. Also, drugs such as the sleeping aids should not be taken for long periods of time. Other drugs may have unpleasant side effects, which may continue after the initial adjustment phase so should be discontinued.
Drug names are those available in Australia. The drug names have been sourced from the MIMS website: www.mydr.com.au/drugs/drugs.asp which is an informative website, designed for consumers. The exception is Miraprex which is only available through drug import companies but has been included here due to its wide use in the US. For those wishing to access this pharmacy service please see note below or email to info@rls.org.au
INTERMITTENT RLS
This is defined as RLS that is troublesome enough when present to require treatment but does not occur frequently enough to require daily therapy. These are the possible courses of action recommended by the Medical Advisory Board:
Non-pharmacologic therapy eg: vitamins, minerals, exercise, mental distractions.
Dopamine precursors, medications that increase levels of the brain chemical dopamine, eg: carbidopa/levodopa (Sinemet, Madopar). NOTE: Ideal to use a few times per week or take as needed, such as when travelling. Daily, use is illadvised due to tendency for "augmentation". This means the drug becomes less effective over time, causing symptoms to occur earlier in the day. Symptoms may become more severe.
Dopamine agonists, medications that stimulate dopamine production, such as ropinerole, Repreve, or pramipexole, Miraprex. [DETAILED DESCRIPTION BELOW]
Low-potency opoid analgesics (pain relievers), such as the opioid agonist, tramadol, or propoxyphene (Capadex or Doloxene), or codeine.
Benzodiazepines or benzodiazepine agonists (sleeping aids) for short term use, only, such as temazepam, triazolam, zolpidem.
DAILY RLS
This form of RLS is frequent and troublesome enough to require daily therapy. Any of the following are possible courses of action.
This form of RLS is difficult to treat because when dopamine agonist therapy is given, the patient’s symptoms have a negative response in one of the following ways:
Inadequate relief of symptoms despite adequate doses;
Symptom relief becomes inadequate over time, despite increasing doses;
Intolerable adverse effects;
Augmentation, which results in RLS symptoms appearing earlier in the day. These symptoms are not controllable with additional earlier doses of the drug and they may become worse in intensity. This tendency is well described in the December issue, or check out the article on the website.
The recommendation for a patient with Refractory RLS is to search out a doctor who has a good understanding of RLS and its treatment. As this can be difficult, you may wish to contact the RLS Patient Support Coordinator via mail or email. Most large cities have a hospital with a sleep disorders clinic where you should be able to find assistance from a specialist. Many neurologists have a reasonable knowledge of the treatment of RLS, as they deal with movement disorders. It is advisable to take along a copy of this explanation of the RLS Foundation’s Algorithm, so that the doctor is reminded of recent developments in treatment medication.
FOUR DIFFERENT APPROACHES ARE RECOMMENDED AS POSSIBLE THERAPIES:
- Change to pregabalin or gabapentin.
- Change to a different dopamine agonist.
- Add a *second agent such as gabapentin, a benzodiazepine or an opioid such as tramadol.
* For a few with extremely active RLS,
calming results may not be achieved until
even a third agent is added.
- Change to a higher potency opioid.
Dopamine agonist drugs
The derivation of these drugs has become important due to recently discovered side effects.
Non-ergot drugs:
Repreve, ropinerole, (also known as Requip) is the only drug to have been extensively tested here, and gained a “medical indication” for RLS from the Australian Pharmaceutical Advisory Committee. However, not on the PBS, it can be expensive.
Ropinirole, a “non-ergot” derived drug, stimulates D2 and D3 receptors producing dopamine-like effects. The fact that it is a non-ergot drug means that it is safe with regard to the ergot side effects (see pergolide and cabergoline evaluation ahead). Reports of its effective control of RLS symptoms vary as with all drugs. It has been very helpful to some who have tried other products which produced no relief or bad side effects. On the other hand it can cause dizziness and nausea and for some, fatigue, both physical and mental. It is recommended to take care in starting at a low dosage and increasing it gradually. Augmentation has been a problem for some but generally at a moderate level.
Mirapex, (pramipexole), is another “non-ergot” derived drug therapy that has been shown to alleviate RLS sensory and motor symptoms, including periodic limb movements in sleep. Although currently not available here, we have been informed by Boehringer Ingelheim, the drug manufacturer, that they are in the process of working on its release in Australia, hopefully for 2007. It will be known as “Sifrol”, as it is in Europe. (See note above regarding Drug Import Pharmacy).
Pramipexole, which also stimulates D2 and D3 receptors, as does ropinerole, has developed a reputation for excellent symptom relief for many, however, its negative reports are cause for caution. Most commonly reported is daytime sleepiness, depression, some insomnia, nightmares, stiffness and augmentation at a moderate level.
Ergot derived drugs:
These are the class of drugs that have been withdrawn from the market in the US. One of the longest used drugs in this class is Permax, pergolide, (a semisynthetic ergot alkaloid derivative) which stimulates D1 D2 and D3 receptors. Although it gained a reputation as a drug that has generally been well tolerated and very effective in controlling RLS symptoms, recent reports of problem side effects have caused great concern.
Prolonged therapy with ergot derived medications has been associated with inflammation and scarring of lung tissue (pulmonary fibrosis) and heart valve damage (valvular regurgitation). This detrimental effect has mainly been found amongst Parkinson’s patients whose doses are larger, but doctors have warned it is a risk to be considered seriously for all who take this class of drug, long term. If you have been taking pergolide over some years, it would be wise to ask your doctor to give a referral for an echocardiogram to check that no damage has occurred. Most studies show that the effects on heart valves are reversed once the drug is stopped. For those who choose to continue on this medication because it is more effective than others for them, they should have their cardiac function monitored.
Cabaser, (cabergoline), is another ergot derived drug which has been more commonly used in Europe. Unfortunately, being ergot derived, it has the same potential as pergolide, to be associated with the serious side effects mentioned in the previous paragraph, if taken as long term therapy. Parlodel. (bromocriptine) is less commonly prescribed, but being also ergot derived, should be avoided.
Anticonvulsant/Neuropathic pain blocker
A newer drug giving effective treatment for the relief of RLS sensations is Lyrica, (pregabalin).
This drug belongs to the anticonvulsant class of medications. It also has significant analgesic effects which makes it beneficial for those with neuropathic pain. For some RLS’ers, especially those whose sensations have a burning or pain tendency, Lyrica helps bring relief and assists them in achieving a calm night’s sleep. It claims a faster onset of absorption, especially when taken without food (providing nausea is not an issue). Possible side effects to watch for are shortness of breath, swelling of the body, weight increase, drowsiness or mood changes.
Unfortunately, as with other drugs, some people need to increase their dosage to maintain its effectiveness but augmentation of more frequent or severe RLS symptoms appears to be minimal.
Lyrica, also called Xenoport, is based on Pfizer’s drug, Neurontin, (gagapentin). Its availablity can be difficult and may not be widely used until it completes its trials overseas as a specific treatment for RLS.
HELPFUL TIPS
1. A “split dose” seems to work best for many and keeps the drug more active throughout the night. One portion of your dose can be taken around dinner time, which usually helps to give one a settled, calmer evening. Having the next portion just before going to bed, will hopefully take you through a peaceful night! Remember to cut up higher dosage pills for these small portions, rather than take multiple, more expensive, low dose pills.
2. The addition of domperidone has been used to cut back on the initial nausea experienced by some who take dopamine agonist medication.
3. Temporarily discontinuing a drug, switching to another and then reinstating the drug may help to minimize associated side effects or revitalize its effectiveness at a lower dose.
Drug Import Pharmacy
Some members access their medications through drug importing pharmacy companies. Miraprex, which is unavailable in Australia can be imported this way. A member who has researched RLS drug importing, has tried a number of companies and recommends the pharmacy, www.alldaychemist.com as having the best service and prices. This online distributor, headed by qualified pharmacists, makes the claim that their facilities have been approved by regulatory authorities such as the Therapeutic Goods Administration (TGA) in Australia. The website will explain the ordering procedure or contact info@rls.org.au For drugs such as Repreve, available in Australia only on private prescription, savings can be made by importation.
