If you take medication for your restless legs, you may well have to taper off that medication at some point.
In a severe form of RLS you will usually be prescribed a dopamine agonist. Restless legs are probably related to a lack of dopamine. Such a dopamine agonist mimics the action of dopamine.
Dopamine agonists were actually developed for people with Parkinson’s disease. However, in a lower dose, they also turned out to work well for restless legs. Many fellow sufferers make use of this.
However, the downside of these drugs is that in most cases augmentation occurs over time. Augmentation means that the medication works less and less well. You need more and more of it for effect. In addition, your symptoms often become worse than they were before you started taking it.
Get off your meds
After a period of probably an ever-increasing dose, you will then irrevocably come to the point that you cannot continue with this. You must stop taking this medication. If necessary, you can switch to something else, in the hope that it will help you for a while.
However, it is very unwise to stop doing it all at once. Dopamine agonists should be gradually reduced. Depending on the dose you are taking, you should reduce this in close consultation with your doctor.
The dopamine agonists in question are ropinirole, pramipexole and rotigotine. Ropinirole and pramipexole are pills. Rotigotine is a plaster. Another name for this is neupro plaster.
Other medicines
There are also other restless leg medications that may cause you to taper off. These are alternatives to dopamine agonists. I wrote a blog about these alternatives before.
The first in the list are the so-called anticonvulsants. I do know from a number of fellow sufferers that they take a variant of this. Anticonvulsants are intended for people with epilepsy or nerve pain. Examples include pregabalin and gabapentin.
With these drugs, it’s not so much augmentation that makes you stop taking them. Here it is mainly the side effects that make someone decide to throw in the towel. It is also possible that the medication simply does not work. Apparently that varies from person to person.
On fellow sufferer forums I have read what a misery the reduction of these resources sometimes brings. I understand that pregabalin is a highly addictive drug. Withdrawal symptoms are often not tender.
Other alternatives to dopamine agonists are sleeping pills or benzodiazepines. You may know that sleeping pills are also quite addictive. A doctor prefers to prescribe them only as a (temporary) emergency solution. With long-term use, phasing out will also be a major task.
The third alternative I want to mention is opiates. Opiates, for example, are all kinds of derivatives of morphine. You can think of oxycodone and fentanyl. Another opiate is methadone. These are also not resources to be taken lightly. Addiction is a significant risk, as is overdose. I’m not even talking about dismantling yet.
Under supervision of a doctor
Tapering off under the guidance of a doctor is good advice. It is questionable to what extent all doctors handle this carefully enough.
I have heard more than once from fellow sufferers that they received little support from their treating physician. The advice didn’t go much further than when they could take a lower dose and when nothing more. Follow-up with regard to physical or mental problems in this process often failed.
In any case, customization seems very important to me. Each body reacts differently. From experience in my immediate environment I know what a reduction can lead to. Substances that are addictive trigger such a physical or mental reaction in some people that you really can’t just get rid of that substance.
What I have also read is that people indicate that they would never have started the drug if they had known this beforehand. More information from the doctor before prescribing a drug would give a person a better chance to make an informed risk assessment and choice.
Clinic
There is not (yet) a special tapering clinic where people with restless legs can go if they have to taper their medication.
When I had to deal with this with someone close to me, this was not yet the case for any target group. This is over 15 years ago. The person in question then wanted to wean off a drug for anxiety and depression. The vague advice he got from the psychiatrist was to take a little less each time.
He started cutting pieces of the pills, to do it as gradually as possible. This was such a mess and failure that the fear that had started it all a few years earlier returned. In the end he had to go to a higher dose than before to restore the balance somewhat. Trust me, this is a very short version of a pretty disastrous course.
I don’t know exactly what the options were then, but tapering strips are now available. These are strips that contain exactly the right doses per day for tapering. The person in question no longer has to fiddle with a knife to cut the pills. Unfortunately, health insurance policies do not usually reimburse these tapering strips. Unbelievable but true.
Such tapering strips could also work for people with RLS, I think. I suspect they don’t exist for this target audience yet.
There is, however, a rehabilitation clinic in Amsterdam. This phasing out clinic has been in existence since January 2021. The outpatient clinic has extensive experience with reducing antidepressants. I can imagine that that experience can also be very useful for anyone who wants or needs to get off other drugs that you can’t just stop.
