These 32 tips for tapering off your medication have been drawn up in collaboration with Dr Peter Groot, who has lived experience with tapering and published extensively on the topic 1-11. He can be considered one of the world’s foremost experts on this issue. He developed these tips together with psychiatrist Prof. Jim van Os, developer of Psychosisnet.com.
These tips can get you started when reducing or stopping your medication. They also provide valuable information for deciding whether tapering is wise, how to prepare and how to taper off your medication safely.
1. Sensitivity to psychosis and bipolar fluctuation in mood is human – every person has some degree of these sensitivities.
2. Some people have a very low level of sensitivity, other people have a very high level of sensitivity.
3. If you have a high level of sensitivity, you can occasionally become psychotic or manic/depressed during stress.
4. Every person must learn to live with their level of sensitivity to psychosis and bipolar mood fluctuation.
5. This can sometimes be a very painful and lengthy process – but it is possible.
6. Modern psychiatry wants to be recovery-oriented: helping people to experience a meaningful life. By learning to deal with your sensitivity to psychosis in times of stress, you can create “free” space for your life and personal goals, next to the domains of “vulnerability” and “illness”.
7. Recovery is an individual quest; you cannot know in advance what will or will not work for you. Experiments are therefore crucial on the road to recovery, including experiments with medication.
8. Medication can help in the acute phase of a psychotic or manic episode.
9. Medication can also help prevent a new psychotic or manic episode.
10 The ‘Numbers Needed to Treat’ of lithium / antipsychotics in preventing a new manic / psychotic episode is about 4. That is, out of four people who remain stable on medication over time, three would have been similarly stable on placebo (“sugar pill”).
Tapering off medication
11. Most people want to phase out their meds at some point: they want to decrease the dose or even stop. This may be a good idea for 3 in 4 people – see line 10.
12. You cannot know in advance whether tapering is a good idea for you.
13. Whoever stops taking lithium / antipsychotics therefore takes a risk, but not a huge one. It is a calculated risk, although this depends on what happened during previous episodes and how severe they were.
14. A patient who is legally competent may wish to take such a calculated risk.
15. Tapering your meds safely and successfully means:
- Doing it in consultation with your prescriber
- Doing it gradually
Decreasing meds in consultation with your prescriber
16. Express your desire to taper off to your treating physician. It is important that your doctor thinks with you and supports you – even if you take a risk in the context of recovery. The doctor can (or should) help you by monitoring and guiding you. It is really a matter of working and deciding together. The doctor may be critical about your choices – and that is his right in the process of shared decision making.
17. Under the law, a doctor cannot simply refuse to help patients who are legally competent and want to take the calculated risk – in the context of recovery or for other important reasons – of reducing / stopping medication.
18. Under the law, a doctor cannot abort care because he disagrees with a decision by a competent patient to conduct an informed experiment with reducing/stopping medication.
19. The chance of a successful completion is greater if you:
- Taper in consultation with your practitioner.
- Take enough time to gradually taper off.
- Monitor yourself closely during the tapering process.
- Adjust the process of tapering if it goes too fast.
- Have insight, understanding and acceptance of your vulnerability and are able to give it a place in your life story.
- Learned the importance of regularity, structure, nutrition, sports / exercise, sleep and things like meditation and yoga.
- Have a network around you of people you trust, who know your sensitivity, who have lived experience themselves and with whom you feel connected.
- Are not stressed or in a major life transition.
- Have made a good crisis plan that everyone (you, partner / network, GP, mental health services) is aware of and willing to cooperate with.
Taper down gradually
20. Very important: Take enough time!
- Make a plan in advance with your practitioner so that you both know what you are working on.
- The steps by which the dose is reduced should not be too large and should become smaller towards the end – we call this “hyperbolic” tapering.
- The duration of the tapering is related, among other things, to the length of time you have used medication and in what dosage.
- Each step involves decreasing a certain percentage (e.g. 20% in the beginning and 10% later) and using that dose until you have stabilized on it (e.g. one to two months.)
21. This is how you prevent withdrawal symptoms or relapse.
22. It can be hard (also for your doctor) to make a distinction between relapse and withdrawal symptoms. Relapse needs a different adjustment than withdrawal symptoms.
23. Therefore, make sure to prevent withdrawal symptoms by very gradual tapering.
24. You do this by gradually decreasing at a pace that suits you. You don’t know exactly what the pace is – and there is no way of knowing beforehand.
25. This level of uncertainty should not be a problem if you work closely with your prescriber to closely monitor yourself during the tapering process. Proper (self) monitoring must therefore be ensured.
Monitoring and adjustment
26. During the process of tapering off the meds, pay close attention to how you are doing. Unrest / anxiety / irritability or similar symptoms means that the tapering goes too fast. In that case, consult with your prescriber to find the approach that best suits your situation: (i) Decrease the speed of tapering off your medication or (ii) stabilize temporarily at the current dose and then continue tapering down, but at a slower pace.
27. If you stabilize (that is: you stay on the same dose for a while) the withdrawal symptoms will subside over time. Once the withdrawal symptoms have settled, you can continue tapering, but at a slower pace.
28. It is clear that successful tapering requires a flexible adjustment of the process over time. To make this possible, it is important that your practitioner can prescribe the medication you need for this.
Using tapering strips
Since pharmaceutical companies have never bothered to make dosages that are sufficiently varied to allow gradual tapering, it has been very difficult or even impossible for patients and prescribers to taper off psychiatric medications.
29. However, flexible and personal tapering has now become possible with the advent of so-called tapering medication – tapering strips and stabilization strips. Practitioners can prescribe such tapering medication in consultation with you and adjust them very flexibly during the process if necessary.
30. At the request of patients, tapering medication is made and provided by the Regenboog Pharmacy in Bavel, the Netherlands. There are currently no comparable alternatives. For information about tapering strips see: www.taperingstrip.org
31. The tapering medication comes with a self-monitoring form that you must fill in once a day. This is an easy and quick task. Doing so will show you and your practitioner how the tapering medication works for you.
- As long as things are going well, you can simply continue to taper off the meds.
- When you notice you are getting new symptoms or a worsening of existing symptoms, immediately contact your practitioner to discuss whether and how to adjust the tapering process.
Through proper adjustment, you ensure that your tapering continues to run as smoothly as possible.
Alternatives to medication
32. There are alternative therapies for medication: voice hearer groups, recovery groups at a recovery academy, running therapy, meditation, body-oriented work, psychotherapy.