In 2003 I experienced the worst depression I had ever had in my entire life, and I started to use antidepressants. As a patient and as a scientist I started reading about depression and about antidepressants. Quickly I found out that it can be very difficult to stop using these drugs. For the antidepressant I use, Venlafaxine, it is practically impossible to stop without suffering from withdrawal symptoms. If today I forget to take my daily capsule, tomorrow morning I will experience the first symptoms of withdrawal.
The best way to minimise withdrawal symptoms is to gradually reduce the dose over a prolonged period of time. How long? Nobody really knows. This can differ between patients. If a patient has the opportunity to take enough time, my guess is that most if not all withdrawal symptoms can be prevented. The same is true for other types of drugs, for instance benzodiazepines, where physical dependence after chronic use is another major problem.
July 11th is Benzodiazepine Awareness Day and also the birthday of Professor Heather Ashton, famous now for her work on helping people withdraw from difficult-to-stop drugs like benzodiazepines. She has been advocating very gradual tapering, over periods of months and if necessary even years. She also advocates patient-choice and shared decision making, saying that doctors who want to help their patients should listen to them and work together during the taper. Shared decision-making empowers patients and encourages them to take responsibility for their own treatment.
Realising a gradual tapering method in daily practice has turned out to be very difficult. The major problem, in my opinion, is the fact that the different doses needed to do this are not readily available. After becoming aware of these problems and with the help off others (and making a very long story very short here) I became involved in the development of so-called ‘Tapering Strips’. Currently these tapering strips are available for patients in the Netherlands for 24 different drugs, including the benzodiazepines clonazepam, diazepam, lorazepam, oxazepam and temazepam.
A tapering strip uses the same principle as the coins we use to pay small amounts of money with. We can pay 40 cents using three coins — one of 25, one of 10 and one of 5 cents — or 20 cents using two coins of 10 cents or four coins of 5. With pills we can do the same. What we need is pills with low doses and we can then put together every dose we want.
The practical problem is how to deal with this as a patient. We found that a practical solution to solve this was readily available. We package the pills for each separate daily dosage in a pouch of so-called “baxter strips,” or medication on a roll. Each roll provides medication for a practically convenient period of 28 days.
One size fits all does not work. It is not possible to use the same tapering schedule for all patients who wish to stop with a certain drug. Therefore we had to come up with a flexible solution that was both practical and allowed doctors and patients to make the choice they deemed appropriate. What we came up with was a modular system, consisting of a number of different tapering strips for a given drug. This offered the possibility to choose for different tapering schedules by using one or more tapering strips consecutively.
Doctors who prescribed the tapering strips, along with their patients, told us that it was sometimes necessary to adapt the taper: to let the patient go slower or to give the patient a ‘pause’ by staying on the same dose for a certain period of time, before continuing the taper further. To allow patients to do this is it possible to use so-called stabilisation strips. What we also heard from patients is that not everybody was able to stop completely, but they were able to continue using their drug at a lower dose than the dose they used previously. This is not surprising, if you realise that drugs are prescribed at the same average doses to all patients.
We worked out this whole system by listening carefully to what patients and doctors told us. We also ask patients who have used the tapering strips what their experiences are. What patients tell us is that tapering with the use of tapering strips becomes much easier. They suffer fewer withdrawal symptoms and are very satisfied with the tapering strips and the information provided.
Currently most information about the tapering strips is still only available in Dutch. The reason is that we wanted to make the strips available to patients as quickly as possible and it was easier to do this is if, for the time being, we limited it to our own country. By now, we feel confident that the system we have developed is ready to be used in other countries too. Not all information has been translated into English yet, but we are working hard to make important available as as soon as possible. The most important information, a user (patient) written provisional protocol which we hope will be commented on and endorsed by official guideline committees, and receipt-order forms for all the drugs for which tapering strips are currently available, can be found at www.taperingstrip.org.
I sincerely hope that a lot of patients will benefit from them.