We also asked Peter Groot who helped develop the first Tapering Strips for Antidepressant withdrawal – who with colleagues has demonstrated that this can help many people – not all – unfortunately not all he would say.
Before answering the questions, all were asked, Peter offered some more general views that have been paraphrased here.
What does H’s mild depression mean, why the increase in dose, were other treatment options discussed?
How did or can H’s doctor know that her sleep difficulties are not related to the use of Effexor?
Temazepam looks like it was prescribed indefinitely. How does this relate to what guidelines say?
H’s withdrawal was linear tapering as opposed to ‘hyperbolic tapering’, which is predicted to lead to ever larger problems at each following tapering step (1).
When she had difficulties, the tapering should have been halted, regardless of whether the problems she reported were thought to be physical or mental (2).
How many withdrawal symptoms can a patient report without them being recognised as such?
When doctors believe that certain symptoms are not related to withdrawal of a drug and do not report it, the effect will be that in the literature these symptoms will indeed not be related to the drug! The result is a self fulfilling prophecy!
How do these doctors know, other than their gut feeling that these symptoms are probably transient? Where is the evidence?
In the case of adding gabapentin etc, H’s problem is not that Effexor does not work well enough but that it is causing major harm. Ever more medications to try to solve problems caused with wrongful prescribing of medications in the first place.
Were are the guidelines that support these solutions? If these are not there, what are these physicians doing? What is the difference with African medicine men we use to laugh at?
I don’t know what ‘Movical’ is. It is added to all the other medications in a desperate attempt to solve problems caused by previous medications without knowing if this could lead to yet more problems. This is clear example of a disastrous prescribing cascade causing iatrogenic harm
When H tries to come off again and the skin problems return so quickly (after what is essentially a rechallenge) this is strong evidence that these are withdrawal problems.
If this patient wants to taper, she should be enabled to do this very slowly and in very small steps allowing for proper self monitoring.
A huge problem for H now is that so much damage has been done to her, it is difficult to predict what approach could be successful for her current complaints.
I am not able to give good advice here, other than to do things gradually and – very important – on the basis of shared decision making in which the doctor is honest about what is known and what is not known and is willing to listen to and guide the patient.
In the case of her doctor – she ‘told me that people can experience depression in a very physical way. For example, some people get back pain even though there is nothing wrong with their back. She said my skin feeling was my version of that.’
The patient is told that she has a major depression and this explains her complaints away by saying that the complaints of the patients can occur ‘even though there is nothing wrong‘. If there is nothing wrong, how can the patient be diagnosed with ‘major depression’? How is this helpful?
Increasing the dose so quickly:
Increasing the dose to 375 mg:
I find this case a very sad example of a prescribing cascade leading to iatrogenic harm, which could have been prevented if her doctors had been willing to listen to her and had taken seriously what she was telling them, instead of relying on beliefs or even prejudices for which there is little or no proof at all, which are often called ‘expert-opinion‘
I hope it will be possible to help her to improve her situation, but I suspect this may take a long time.
She suffered from withdrawal at the very beginning. Because the withdrawal was handled so badly, she now suffers from the iatrogenic consequences of overmedication which is the result of a terrible prescribing cascade. This makes it much more difficult to deal with than the withdrawal problems she had at the beginning.
By at the beginning, I mean the moment during the tapering when she experienced the first problems: ‘When I dropped to 75 mg problems started‘. Patients who are currently being prescribed tapering strips or the stabilisation strip we developed in the Netherlands will see that they come with a simple self monitoring form which patients are asked to fill in. We ask them to do this to help themselves and their doctor to guide the tapering.
What they are asked to do is to fill in how they rate there own subjective experiences about possible complaints they might have on a scale of 1 (no complaints) – 7 (severe complaints). They are asked to describe their complaints especially when they are new or when they suddenly become much worse or improve. But they are not obliged to do this. Our primary motivation is to help the patient because we consider this to be more urgent than trying to answer scientifically interesting questions. We explain this is the review which is about to appear (3).
The reason to ask for subjective experiences is that these are what matter for the patient. Whether their complaints have been recorded previously by other patients may be scientifically interesting but is not the first concern of the patient. As this case demonstrates, making clinical decision based on whether certain symptoms have been reported previously can harm patients. In this particular case doctors have telling the patient fairy tales – that the complaints the patient had had nothing to do with (tapering of) the venlafaxine – without knowing if these fairy tales were true. But my main criticism is that such an approach does not help the patient.
To go back to the tapering. The way we feel this should be done – which is actually in agreement with all the not concrete advice in guidelines and patient leaflets – is to taper at a rate which helps the patient. In this particular case, the fact that this lady was experiencing problems when she reduced the dose from 112,5 mg to 75 mg very strongly predicted that the perhaps still manageable withdrawal problems she experienced would become much worse if she continued to taper further to 37,5 mg and even much much worse after that. Which is precisely what happened.
With the knowledge we have – and already had – this could have been prevented by halting the tapering at 75 mg. Or perhaps by increasing the dose, perhaps even a little bit. And by continue tapering when the patient felt better and up to it. And without prespecifying how long the taper should last. Because we must accept that we are not able – and perhaps never will be – to predict this for an individual patient.
Patients are much better helped if a doctor guides the tapering on the basis of the information the patient provides and by listening to what the patients wants. If that would have happened in this case, a lot of the damage that has now been done could – and should – have been prevented.
Complaints from patients when coming off patients can be very different from each other and I doubt if a really good inventory has ever been made. A problem here are circular arguments that are often being used. Doctors who say “that’s not something which is normally reported as an Effexor withdrawal symptom” may be inclined not to ascribe these symptoms not normally reported to (withdrawal of) Effexor. As a result the symptoms may not be reported as a possible side effect. And this will lead future doctors to conclude “that’s not something which is normally reported as an Effexor withdrawal symptom”. Leading to harmful self fulfilling prophecies.
It is my view that the attitude of the medical profession in cases like this should change. Doctor should telling something completely different to their patient: ‘I do not know if your complaints have been reported before, but because you started having them while you were tapering I consider this as a signal that your tapering is going too fast for you’.
This leaves a scientific question open which is not really relevant for the patient in the first place. Because the first concern of the patient is to be helped properly. Such an helpful approach is in strong contrast with what sadly often still happens, where patients are being treated badly on the basis of theoretical considerations and ‘expert-opinion‘, which in this particular this case clearly was not worth very much.
This depends on the situation. The sooner a patient reports complaints, the easier it is to help them. Therefore it is so important that a patient self monitors and reports upcoming complaints during tapering to the doctor as soon as they start occurring. In such cases the advice can be relatively straightforward. The doctor can then ask the patient if the complaints are still bearable and if the patient wishes to stay on the same dose (stabilise) for a while or perhaps to increase the dose again, perhaps even a little bit in order to let the complaints go away. Outcomes will differ depending on the situation and patient, but changes to help the patient are much better if this approach is followed than based on the doctor’s beliefs or prejudices.
The longer a patient waits before asking for help, the more difficult it will become to determine what will be the best approach to continue. Because the more harm will have been done.
Whatever the advice of a doctor will be, it is crucially important that the doctor honestly discusses the uncertainties of different approaches and really listen to what a patient tells and what a patient wants. Clearly, in this particular case none of this has happened.
For me this question is too open to give a straightforward answer. Patients differ from each other as do their circumstances. Depending on these circumstances a patient may be able to increase or decrease in certain circumstances and not in other circumstances. Generally speaking we can say that until now tapering has never been done and could not be done properly. Because the medication to do this has never been made available. I think we have changed this by developing tapering medication. We are now gathering data about their use in daily clinical practice from as many patients as we can. And are working hard to publish about this in the near future. I hope this will help us to give meaningful answers to questions like this. But at this point in time I find this difficult.
It fits more or less, but certainly not completely. Things are definitely more complicated than that. For instance, the way people try to come off benzo’s using the Ashton protocol in which very slow tapers are shown to be helpful for some patients, cannot be explained by looking at the receptor occupancy only. The same is true for tapering of fluoxetine, where there are people who experience severe withdrawal symptoms who are being helped by gradual tapering using tapering strips. Which cannot be explained on the basis of receptor occupancy.
It is my strong view that for the time being it is most helpful to leave aside all sorts of theoretical considerations and agree that the most helpful approach for helping patients is to listen to them and to allow them to taper at a speed they agree with.
I am afraid I have no clear answer here. I can only hope she finds a doctor who is helpful and willing to guide her in a probably difficult and perhaps long process to recover from all the iatrogenic damage that has been done to her.
To be continued with a final entry next week