Following H’s report of difficulties with Effexor, we asked Will Hall, Altostrata, Bob Fiddaman and Josef Witt-Doerring, all experienced in this area, how they would Manage her Withdrawal.
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
The Pharmaceutical Journal
Dutch website selling tapering kits for coming off antidepressants launches English-language version
The Pharmaceutical Journal12 JUL 2017By Debbie Andalo
Patients in the UK will be able to buy kits containing prescription-only medicines from the website without a prescription, but the MHRA warns that self-medication is potentially risky.
Tapering strips are available for weaning patients off lithium (pictured) and tramadol, among other antidepressant and sedative medicines
An English-language version of a Netherlands-based website which sells kits to patients to help them wean themselves off antidepressants and other psychiatric drugs has been launched.
Each kit includes a tapering strip of medication packaged in a roll of small daily pouches. Each pouch is numbered and has the same or a slightly lower dose than the one before.
Tapering strips — designed for a 28-day cycle — are available for a number of antidepressant, antipsychotic and sedative medicines; strips for weaning patients off lithium and tramadol are also available.
Patients can use the strips to regulate their dose reduction over time, according to the website; information printed on each pouch allows them to precisely record and monitor their progress.
The UK medicines regulator confirmed today (Tuesday 11 July) that it is aware of the site, but as it is hosted in the Netherlands it has no jurisdiction over it.
The Medicines and Healthcare products Regulatory Agency (MHRA) has, however, contacted the Dutch regulatory organisation, the Medicines Evaluation Board, to discuss the site.
A MHRA spokesman explained that it is open to a UK patient to buy a kit from the website. Because the purchase is being made outside the normal UK drug supply chain, a UK prescription is not required — even though the strips are made up of prescription-only medicines (POMs).
“Although POMs can be imported for personal use, self-medication is potentially risky and we advise against this,” he said.
The new website is an English-language version of an established Dutch site, which has been developed in a collaboration involving pharmacist Paul Harder from the Regenboog Apotheek, the charity the Cinderella Therapeutics Foundation and the user research centre at the department of psychiatry and psychology at the University of Maastricht. All are based in the Netherlands.
Harder told the Pharmaceutical Journal that medication would not be prescribed to patients in the UK without a prescription.
He said: “Patients in the UK should ask their doctor to fill in an order form on the website, this serves as a prescription. The GP must sign the form and provide their medical registration number along with contact details.”
Welcome to Cinderella Therapeutics
Prescribing and ordering tapering strips
Tapering strips are only available on prescription. The signed order form is considered a prescription.
Tapering strips should not be seen as a replacement for the usual patient care provided by a doctor. Adequate support of patients during tapering, but also for some time afterwards, remains at all times essential for timely recognition of any signs of remission.
Tapering strips are a tool to make it easier for both the patient and doctor when stopping with a drug or reducing the dose
Together with the treating physician, the patient can make a choice from the different tapering schedules on the order form.
After signing the form, the physician should fax it to the Regenboog Apotheek (Rainbow Pharmacy). The fax number is stated on the order form.
The medication is sent by post to the patient’s home address, in principle within a week. The patient and the doctor are informed of this by email.
In principle, tapering strips can also be sent to patients outside of the Netherlands, in accordance with legislation in place for that country.
After using one or more tapering strips, the patient receives a short questionnaire and return envelope asking them about their experiences with tapering. This information will help to improve the use of tapering strips in the future.
The different medications for which tapering strips are available are listed below. To order tapering strips for one of these medicines or for more information, please contact Paul Harder, pharmacist at the Regenboog Apotheek.
However, Harder was not able say how he would verify the credentials of the person signing the form, as no formal arrangement had been made with the medical profession in the UK.
He added that he would be contacting officials in the UK to discuss this further but admitted that in the meantime the website could potentially be open to abuse.
Dr Peter Groot, from the university’s user research centre, said it had decided to launch the English-language version of the site following contact with lobby groups and individuals in the UK who are campaigning for more help to support patients who want to be weaned off psychiatric drugs.
He told The Pharmaceutical Journal: “This is something that we had planned for some time ago. This problem [weaning patients safely off psychiatric drugs] has been known for a long time. The problem for doctors and pharmacists is that the right medicines for tapering are not [readily] available.”
A statement on the university’s website points out that Cinderella Therapeutics is a non-profit foundation and works with volunteers with the aim of making ‘stepchild’ drugs available to patients at an affordable price.
The university’s user research centre and the charity have no financial interest in the development or provision of tapering strips, the statement claimed.
In the UK the doctors’ trade union, the British Medical Association, has been campaigning for more support for doctors for helping to wean patients off drugs prescribed to treat psychiatric disorders — including guidance on tapering medicines.
A change.org.uk petition by James Moore — who has personally battled to come off drugs prescribed to treat his depression and anxiety — calls on the UK government to allow tapering strips to be made available to help patients weaning themselves off psychoactive drugs. It has attracted 2,072 signatures.
Moore said: ”This is groundbreaking work from a highly respected academic institution and it needs support and for the regulators to get properly engaged rather than focus on prohibition. Patients have little option when they withdraw and the Royal College of Psychiatrists found that 63% of people taking antidepressants suffer withdrawal effects and many suffer for prolonged periods. There are even cases where users have taken their own lives because of the severity and protracted nature of withdrawal.”
“Because the purchase is being made outside the normal UK drug supply chain, a UK prescription is not required — even though the strips are made up of prescription-only medicines (POMs). “Although POMs can be imported for personal use, self-medication is potentially risky and we advise against this,” he said.”
Dutch tapering kits website investigated by Dutch Health Care Inspectorate
John Read Retweeted
Doctors are reaching for the prescription pad without taking time to discuss the treatment options with patients, a Scottish parliament investigation has found.
GPs’ rapid prescriptions ‘put patients at risk’
Helen Puttick, Scottish Health Correspondent
Tuesday June 30 2020, 12.01am, The Times
Doctors are reaching for the prescription pad without taking time to discuss the treatment options with patients, a Scottish parliament investigation has found.
A culture of a “pill for every ill” in Scotland, where patients expect to be given drugs to make them better and GPs are too rushed to talk through different options, needs to be addressed urgently, according to the report. It warns that patients could be at risk because they are repeatedly given the same medicines without reviews to check their efficacy.
The report adds: “There does not seem to be a correlation between the government’s expectation these conversations are occurring and the reality in the GP surgery.”
The health and sport committee encountered scepticism among GPs about alternatives to drugs, such
Moore, who is based in Wales, used the strips to become drug-free after more than seven years of antidepressant use. In September 2019, Moore sent a letter, co-signed by experts, to the UK health and social care secretary, Matt Hancock, requesting him to trial tapering strips in a sample of general practices and psychiatric clinics, with a view to implementing them across the NHS.
Wendy Burn, president of RCPsych, supported this call for a trial in a separate letter. Moore, Burn and I have had positive discussions, but, as yet, there has been no response from Hancock.
For some light hearted humour:
Anybody interested in participating in paid clinical trials for anxiety medication?
It’s all safe!
Seriously, we can laugh at the video attached however, the harms they induce can be deleterious to ones health.
David and Goliath – Cinderella or Novartis. I guess most of us would choose Cinderella rather than doctors influenced by a free guzzle in a swanky hotel but whatever loophole is used presently the thing is it’s not possible for most to assess whether a doctor would be the ‘right’ one to help with tapering. (or anything else) They don’t put that even as an ‘interest’ in info on practice websites This is the bottom line from the experts ie to find the right person to help – How? H bounced from one to another at an astonishing rate – yet those who caused her harm have no obligation to provide investigations if by the NHS – if in USA not having cash to pay for it is the sickening outcome.
Home Industries Pharmaceuticals
Novartis finalizes $678 million settlement
Novartis AG on Wednesday said it completed an agreement with the U.S. Attorney’s Office for the Southern District of New York, the New York State Attorney General and relator Oswald Bilotta, which will see it pay a $678 million settlement to resolve “a civil suit challenging speaker programs and other promotional events conducted from 2002 through 2011 by Novartis Pharmaceuticals Corp.”
The U.S. alleged Novartis hosted tens of thousands of speaker programs and related events “under the guise of providing educational content, when in fact the events served as nothing more than a means to provide bribes to doctors,” the Justice Department said in a statement late Wednesday.
Novartis paid physicians, purportedly as compensation for delivering lectures regarding a Novartis drug, the Justice Department said. But many of the programs were nothing more than social events held at expensive restaurants, with little or no talk about the Novartis medication, prosecutors said. Some of the so-called speaker events never even took place, prosecutors said.
“Giving these cash payments and other lavish goodies interferes with the duty of doctors to choose the best treatment for their patients and increase drug costs for everyone,” Acting U.S. Attorney Audrey Strauss for the Southern District of New York said in a statement. “This office will continue to be vigilant in cracking down on kickbacks, however they may be dressed up, throughout the pharmaceutical industry.” (Hollow laughter )
Claire: The First Patient in the UK to Use Dr. Groot’s Tapering Strips to Taper Valium
In this informative video for World Benzodiazepine Awareness Day, Claire, who was made physically dependent on prescribed benzodiazepines (Valium), discusses how she is the first UK patient to use Dr. Groot’s tapering strips. Her plan (which she was given the right to control the rate and speed of, as the patient) is to reduce from 1mg to 0mg over 2 months time. She was initially taking 100mg and has tapered herself down to 1mg using The Ashton Manual protocol (www.benzo.org.uk/manual), but found herself having trouble finishing out the taper, as she could not tolerate liquid Valium, so she needed another solution.
To use Dr. Groot’s tapering strips, you do need a cooperative prescriber. For now, they are only available for an out-of-pocket fee, but the hope is to change this and to petition to have insurers and governments start to pay for them.
To learn more about Dr. Groot and his “tapering strips,” listen to James Moore’s podcast interview featuring Dr. Groot: https://www.youtube.com/watch?v=oKhh2…
Tapering Strips Description Paper: http://www.cinderella-tx.org/files/20…
Tapering Strip website in English: http://www.taperingstrip.org/
User Research Center, Project Tapering (in Dutch): https://urc.mumc.maastrichtuniversity…
List of drugs for which tapering strips are currently available (in Dutch)
*Note from Dr. Groot: “On this website, people can find ordering forms for all the available drug tapering strips. The pharmacist told me that it should be possible to provide the strips to patients in the UK if a licensed doctor fills in the prescription. I would very much like to make it possible for patients in the UK to take part in research projects using self-monitoring with the PyMate-app”: https://urc.mumc.maastrichtuniversity…
I do feel that tapering strips go a long way towards safer withdrawal but I have two queries.
What happens if you start using the strips but find that their pattern of reduction is nowhere near slow enough for you? Could you end up needing a number of strips so that you could lengthen your stay on a step before going down to the next? If so, it could prove to be very costly!
Shouldn’t pharma companies be asked to provide a liquid form alongside the strips? In this way, you could adjust your tapering even further if the steps were too steep for your needs.
Every medical centre should be fully aware of these kits – is that so I wonder? All of you who have experience of withdrawal – especially if you’ve had problems in withdrawing – could be a valuable asset to support others in withdrawal. We think so; we thought doctors and nurses would think so – privately, some do, but will not speak out, publicly, about such matters. We even tried our local health board, to see if they would agree with the need. Their reply was to give me instructions on how to take part in voluntary work! They’ve had a reply to that idea – I shan’t bore you with the details! Suffice to say they’re still sitting on that fence – neither agreeing nor disagreeing with our suggestion. In fact they’ve yet to reply to my last letter.
YOUR QUESTION :
What happens if you start using the strips but find that their pattern of reduction is nowhere near slow enough for you? Could you end up needing a number of strips so that you could lengthen your stay on a step before going down to the next? If so, it could prove to be very costly!
I agree that the use of tapering medication use can prove to be costly for patients when they have to pay for it themselves, especially for those who need a long taper.
I consider this highly unjust. Over time more and more patients have started to use psychiatric drugs and are staying on them, sometimes for years on end. The drugs they use were being paid for without question, by health insurers or – in the UK – by the NHS. thus allowing pharmaceutical companies to make huge profits.
For years, even though it was clear that withdrawal was a problem, practical solutions to do something about withdrawal problems were not developed. Not by pharmaceutical companies, not by psychiatry. And now, when finally a practical solution has been made available, patients would have to pay out of their own pocket? To solve a problem that they did not create? A problem that many suffered from without getting proper help? I find this wrong and unjust and I hope this will change in the near future.
Finally, it is my opinion that the tapering medication we developed is in fact not expensive. There is a reason why no company in the past has ever considered to develop such a solution.
YOUR QUESTION :
‘Shouldn’t pharma companies be asked to provide a liquid form alongside the strips?’
I think not. There are patients who are able to taper successfully using liquid medications, but there are also many patients for whom the use of liquid medication is causing problems. A good inventory of this has never been made.
That the use of liquid medication can easily become problematic is not strange. This is because liquid solutions have not been developed for tapering. Also, they have never been tested for this purpose. The accuracy of dosing, especially when dosages have to be low, is problematic. In comparison, the accuracy of using tablets with fixed (low) dosages, as is being done in tapering medication, is much higher.
I invite those who argue for the use of liquid medication for tapering to provide actual evidence for its efficacy. Thusfar Ihave not seen such evidence.
Thank you for your replies. Your comment about liquid form is interesting. My son, when reducing his Quetiapine, exchanges a 25mg tablet for 5ml liquid, keeping the rest of his dose in tablet form. He does this so that he can control the reductions (25mg being the lowest tablet available). He suffers on that exchange even before reducing. I found that most confusing but, having read your comment, I understand now that the problem may lie within the liquid. I must add that having the liquid has supported him in reducing from 400mg to 125mg which has taken over three years. Without the liquid, he would have had to stay on 350mg due to the severity of symptoms. Even more helpful, of course, was Dr Healy’s support throughout that time. He plans to continue his reductions once we are out of lockdown here in North Wales.
Anyone getting the tapering strips for Paroxetine, as Cinderella advises, and then having the 150 ml bottle of Paroxetine liquid, it would take a skilled doctor to advise which quantities of what, and it is likely that the doctor will have no more clue as to the quantities of each and adjustments than the patient would know, or guess, themselves. When I was doing the reduction from 40 mg with tablets and liquid it was a skilled hospital pharmacist who worked a plan, over a year, but even then, at the last mls, the excruciating withdrawal broke loose again, and there was no one skilled to help at that time…
Two different tapering strips will be made available:
1. Tapering strip PRXT-20-28 to lower the daily dose of paroxetine from 20 mg over 28 days to zero.
2. Tapering strip PRXT-10-21 to lower the daily dose of paroxetine from 10 mg over 21 days to zero.
Three months of the sheerest agony, and there was no way that the doctor then running in with more and different pills would make me ever take another ‘dose’ of ‘anything’ ever, ever again.
So, I think, Mary, it could be fraught with danger to mix things up unless you happen across a ‘skilled advisor’ ..
When things get difficult no advisor is skilled – other than with tips they have picked up from other patients such as taking part of the liquid dose in the morning and part in the evening rather than all in one go
The calculations needed to optimally cut meds is much more sophisticated now but still horrendously tricky to get it right. Surviving Antidepressants (thanks to Altostrata)
Tips for tapering off Effexor and Effexor XR (venlafaxine)
eg One problem , as well as actually doing the meticulous calculations , and bead counting – is that different manufaturers have different numbers of beads in the capsules of the same dose.
If eg the Rainbow Pharmacy is handling the taper that gives a much better and safer chance of success.
Where doctors are unwilling to help taper using proven knowlege
re -Groot, 2018 Antidepressant tapering strips to help people come off medication more safely
By Addax, May 26, 2018 in From journals and scientific sources –
rather than their own beliefs and bumbling efforts which make things worse – if someone doesn’t wish to involve them wouldn’t it be best to just to get the prescription as ususal from a GP/psychiatrist and copy it to Cinderella ?
Second thoughts – There is a high level of control by physicians needed if using the Maastricht Tapering service but the tables used for tapering are on an open site which may help people with reservations about involving physicians or just prefer to go it alone. (They are too detailed to add here – see on Maastricht tapering sites)
Also a list ie Recommended doctors, therapists, and clinics
By Altostrata, August 2, 2011 in Tapering
LocationSan Francisco, CA
Posted August 2, 2011 (edited) The last date on the site though is 2020
If you have any recommendations for doctors, therapists, or clinics knowledgeable about tapering or withdrawal syndrome, please add a post to this topic.
Here are other sources for doctors who might be helpful regarding tapering or withdrawal syndrome:
Doctors who will diagnose drug withdrawal
See Benzo-wise doctors who will assist in benzodiazepine tapering for withdrawal from benzodiazepines. (This list may contain some entries that are out of date, but has been added to recently. These doctors may also grasp tapering of other drugs.)
MadinAmerica.com has a list of practitioners who would withdrawal, mostly therapists but some doctors http://www.madinamerica.com/service-directory/
Safe Harbor’s list. Look for MDs and DOs, who can prescribe. The physicians, who take an integrative approach, have volunteered their contact information and generally answer the question “Help take patients off of psychiatric drugs?” with “Yes.” This list is a little difficult to use, you may need to look at it page by page.
The doctors below have shown concern and knowledge for slow tapering off antidepressants and indicated willingness to work with patients on treatment plans including non-drug treatments.
Before making an appointment, follow the links next to a doctor’s name for more detail and use search to see comments about the doctor elsewhere on the site. Unfortunately, many doctors have reservations about the drugs but think they know more about tapering than they actually do.
If you consult any of these providers, please let us know your experience.
If you do not wish to take any other psychiatric medications after quitting, they should respect your wishes. If you find they do not, please let us know and we will remove them from this list.
Click on their links to see more about these doctors:
This comment came through on an olanzapine post – not this post – but it might be relevant
I’ve been on a very high dose (35mg) of Olanzapine (Zyprexa) for about 12 years. About 3 years ago I tried tapering off it but experienced persistent and severe insomnia that would not go away even after weeks and months. I lay in bed and I just don’t fall asleep no matter what. It gets so bad that I end up going back on Olanzapine just so I can sleep. Even when I do reinstate Olanzapine the insomnia still persists for a very long time. I’ve tried quitting 5 times and every time I experience insomnia. It never goes away and never gets better. It’s brutal. I am writing this post for those who are experiencing the same thing as me, over the years I’ve read numerous posts on numerous websites by people experiencing severe insomnia when coming off Olanzapine, hopefully the information in this post helps people out.
During this current attempt to quit I have been tapering off very slowly, however once I got down to 5mg I started experiencing insomnia again. Now I read that during this COVID-19 pandemic Vitamin C (Ascorbic acid) may be beneficial and since Olanzapine gave me diabetes I am in the high risk group if I catch the Virus. I don’t know if it will really help but Vitamin C is cheap and safe so I figured it couldn’t hurt. I went to the store to buy some Vitamin C and started taking it. To my amazement 4 days after I started taking it I began sleeping normally. To test whether or not it was the Vitamin C that was making me sleep I stopped taking it and the insomnia came back. I then went back on Vitamin C and began sleeping again.
From what I have read Vitamin C doesn’t have sedative properties so I can only surmise that it somehow effects my neurochemistry in a way that offsets the dependency my brain has on receiving a daily dose of Olanzapine. I can’t find any information about this specifically but the effect is huge. The only information I found about Vitamin C that could be related to this effect was that it is useful in detoxifying reactions. When your brain is denied a drug it is accustomed to receiving your brain chemistry can take a long time to adapt to working without it, my guess is that this neurochemical chaos is alleviated by Vitamin C, at least to a point that I can sleep. In the past, whenever I have been on a low dose of Olanzapine, or off it completely, I always have severe and persistent insomnia, now I am sleeping normally for the first time in years.
Vitamin C is generally safe unless you take insane amounts of it. Your body can’t produce it or store it and it’s water soluble so you pee out what your body doesn’t use. For what it is worth I bought 500mg tablets. I split them in half with a pill splitter. I started off taking 250mg of Vitamin C when I was on 5mg of Olanzapine and began sleeping fine after 4 days of taking it. When I dropped to 2.5mg of Olanzapine I needed to increase to 500mg of Vitamin C daily. I take half a pill (250mg) with breakfast and the other half about 2 hours before bed. I have continued my taper of Olanzapine and am now on a quarter of a 2.5mg tablet daily and hopefully will be discontinuing it permanently within a few weeks. I am still taking 500mg of Vitamin C a day and sleeping fine. Once I go off Olanzapine in a few weeks I may have to increase the amount of Vitamin C again. I’ve read the upper safety limit is about 2000mg a day but there are people on the Internet reporting they take more that that, such as 3000mg a day, without any problems (for other reasons). I tried drinking a lot of Orange Juice because it is full of Vitamin C but that didn’t work.
I’m posting this information here to help others with persistent insomnia when coming off Olanzapine. It was a total fluke I discovered this and I hope it helps someone. If it doesn’t work for you it’s no big loss, Vitamin C is cheap and safe. Good luck coming of this drug!
How uplifting to read that you have found a way of managing your reductions – especially, that as a result, you are now able to sleep.
I’m sure that many of us will be so grateful to you for sharing this. Was sleep your only problem when reducing Olanzapine or was it the main problem, quite understandably a horrific one? Interesting, also, to note that orange juice, even in copious amounts, was not doing the trick.
My question now, David, is whether the same could apply to withdrawal from Quetiapine. Is it worth experimenting with this? Multivitamins were tried somewhere along the way without success. Maybe stick with the Vitamin C only?
The response of most doctors, me included, will be Vitamin C is for the birds. But having said that, I respect the observation. Assuming the author is being honest, then this happened. He makes a case for a link to Vitamin C. If anyone else has the same experience, then this gets more interesting. If a number of people find the same thing, even if others don’t perhaps most don’t, this still doesn’t mean that it isn’t true for some people and it does point a way forward – does suggest putting some effort into pinpointing why some people get this benefit.
If it is this easy for a large number of people then you’d think it would have been discovered a long time ago – I’m sure tons of people in withdrawal have been trying multivitamins at least. And the pharmaceutical industry would be spreading the word – unless they are more cynical than even I think
What we could do with is a Wiki on which to arrange all these tips and tricks mentioned in these many posts regarding coming off meds.
Re: Olanzapine and Vit C
I’ve been taking Ascorbic Acid (PRN) and other compounds ever since I was diagnosed with ME/CFS 20 years ago and I knew back then about Ascorbic Acid and fish oil gave benefits when taken with Olanzapine and other drugs that are classed as dopamine antagonist. Although I can’t remember a specific reference to sleep especially. Reading these posts here has taken me back to those days where I was expecting as a given, that by 2010 every patent would be screened for both nutrient deficiencies and metabolic dysfunctions and if found, have those corrected first. So avoiding some 60% of the need to consider psychiatric pharmaceutical drugs. For once on them, there is the problem of then trying to put right the damage they can cause, which some think (myself included) is down to epigenetic alterations and… Ect., etc., etc. [Won’t bore you with all that].
I’m somewhat taken aback by those memories. What’s gone wrong with medical progress?
My guess as to why patients don’t post these and similar observations more often is that they soon learn that the response is very always in the form of ad hominem attacks, and ridicule from pseudo- sceptics. True scepticism is good but the vast majority appear to be idealogical opposed to any mention about the science of orthomolecular medicine.
People who are medical professionals with a higher than average profile (i.e., they are influential) and speak out of line, have their web-sites trolled and attacked. If they hold high professional posts, devious way are found to throw spanners into their careers. This isn’t conspiratorial BS. People have had there jobs threatened and have lost them for deviating from mainstream medical ideology. The daggers can appear in the hands of the most unlikely people (“Et tu, Brute”) who themselves may be feeling something sharp against their backs.
It is no secret that the whole spectrum of Wikipedia medical articles are patrolled by paid editors to ensure the articles stay on message with the pharmaceutical industrial complex. Although the Wikipedia rules forbid paid editing, the paid editors that get ‘outed’ start to wiki-lawyer their way out, on the basis that they don’t receive funding ‘directly’ from ‘a’ pharmaceutical company etc. Editors who try to correct misinterpretations of articles cited in Wikipedia find themselves not only having their Admin rights removed but band from editing completely. Well enough of that.
Years back, I got on well with the medical librarian at the local hospital who could think of more variations of keywords to search the databases with and come up with the best of what research has been done. I got mistaken at times by staff as part of ‘their’ local team or some eminent visiting academic, as I often sat in the library reading or conversing with people on the obscure minutia of this and that.
I learnt to find out who I was speaking to before letting them know what my topics of interest were– which normally goes against my manner. I prefer openness in all things. But one must learn that some things are not to be discussed openly with the wrong people. Pharmacists (that I’ve spoken to) seem OK because there understanding is more mechanistic and grounded in science.
Some of the literature I studied, I can remember enough –I think— to find again. There are a few hard copies I’ve kept some where too, buried under two decades of other unrelated paper work. For anyone interested. Here’s a paper where the authors declared no conflict of interest and showed Vitamin C benefit:
‘A comparative study of oxidative stress and interrelationship of important antioxidants in haloperidol and olanzapine treated patients suffering from schizophrenia’. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738368/
From memory, the above is only a part explanation. An adequate supply of EPA (Eicosapentaenoic Acid) is necessary to keep the neural membrane consisting of phospholipids supple and in good fettle, so as to allow the easy transport of chemicals across it. Also, it is needed to ensure adequate production of prostaglandins, (which are hormone like molecules) until normal homoeostasis becomes self-sustaining again. EPA is often referred to as an ‘Essential’ fatty acid as the body can’t produce it. More EPA than the average diet provides is needed, so that the rest of the body doesn’t sequester too much of what is available. The alpha tocopherol and extra EPA was given via fish oil.
Also bear in mind what else you take with Vit C in doses above 500mg. When one gets into the nitty-gritty. Anything that is taken in levels (including vitamins) that we didn’t encounter as we evolved from lower primates, must be treated with respect. See:
Drug Biotransformation Interactions in Man VI: Acetaminophen and Ascorbic Acid https://www.sciencedirect.com/science/article/abs/pii/S0022354915408810
As an aside: If one finds paracetamol makes one’s stomach feel queasy then that’s a sign that you do not metabolize it well and that’s not good for the liver. So should switch to some other non-steroidal anti-inflammatory drug.
Likewise, some promising treatment for Akathisia used very high doses of a vitamin (so won’t identify it). Found out about this by accident, as it effectiveness was measured using the eponymously named ‘Barnes Akathisia Rating Scale.’ Tom Barnes often perambulated around the hospital complex and although he was (as far as I know) not involved in this research, word spread around the grape vine. Personally, I think the dosage had to be so high as it was monotherapy without addition of other necessary nutrients that take part in the regulatory biochemical and neural feedback systems involved.
Finally, I’ll finish with a rant:
Vitamin D has lately found itself subjected to scepticism and much debate. On the one hand American Institute of Medicine, FDA, and our very own NICE declare they can’t recommend it for Covid 19 as there are no convincing well designed and conducted Randomised Control Trials (RCT) to show its effectiveness for this disease. Oddly and suspiciously, this doesn’t seem to put them off recommending a class of drugs that appear to act like a vitamin D analogue. They appear bind to vit D receptors (not to be confused with dopamine sites) on the chromosome for synthesising cholesterol, there by down regulating it. Thus, this raises vitamin D levels in the blood, so just by chance there is more available for other protective processes. These drugs down regulate not one but two co-enzymes – one intentionally (HMG-CoA) and one unintentionally (CoQ10). But the ideology focusses the benefit (of which there is for one indication) solely on the down regulated HMG-CoA. Both of these co-enzymes are essential for life. Wonder how NICE would marry up a cart and a horse? NICE doesn’t even require the blood test to show separately, if the troublesome and sticky low density apolipoprotein(a) is actually elevate. The test just lumps all the low density lipoproteins together. Yet I can’t find ANY ‘well designed and conducted’ RCT’s studies for those drugs — an neither can anybody else it seems. Getting out into the sunshine and eating a good diet protects the cardiovascular system just as well and without the side effect of these medications. Well. That enough about the Statins and NICE et al. too.
There are other things I could post but I would have to think back to find good references — showing the mechanistic rational — otherwise there’ll be nothing to differentiate the research from some of the rubbish out there and is needed to enable others to judge the quality of the information or merit for themselves), (also my memory mixes things up and so can’t be relied upon) all of which takes me time and so very many blogs like this eventually disappear into 5th dimension of cyberspace never to be seen again anyway.
I enjoyed my former work because it gave me licence to be as sceptical as I wished but with it came the necessity and obligation to dig deep, and so (as Carl Popper would say) ‘Disprove It’– so when I found I had ME/CFS, I dug deep and both experienced and witnessed things that can’t be faked nor can I accept that changes brought about by challenge/de-challenge/re-challenge can simply be written off as coincidences so easily. So I feel compelled to speak out, that there is as I see it, a strong mechanistic rational supporting the correlation of Olanzapine and ascorbate with the poster’s personal experience. Together with (albeit) non-RCT’s surveys showing that with just a ‘one size fits all’ supplement protocol, a very significant percentage (compared to ave. rates) of people on antipsychotics find they no longer need their proscribed medication. So I’m a bit shocked to find here now in 2020 all this is still little known about nor acknowledge in the mainstream medical world.
A comment has come through to RxISK from Dr Michael Miller as follows:
I wanted to share my thoughts… I am one of the tough cases of protracted antidepressant withdrawal (20 years) and I think I may have figured out what is driving the syndrome. After years of devastating symptoms I have tried a new approach and am now about 80% recovered.
I believe that withdrawal begins as a biological phenomenon but that it’s chronicity may be explained by mind-body issues much in the same way that some forms of chronic pain can be accounted for. Essentially, I believe that the symptoms are “learned.” That through repeated “fearful attention” to the symptoms and sensations that they are learned and exist as a sort of neural memory with no actual tissue damage. Through this hypervigilance we are sending a “danger” signal to the brain, and the brain, as always, wants us to survive so it learns and amplifies the symptom to protect us from a bodily sensation that we have inadvertently coded as “dangerous.” Much in the same way that a broken ankle results in pain so that we won’t walk on it, the brain produces the symptoms of withdrawal to protect us.
These are simple conditioned responses. The trigger or conditioned stimulus in this case is fear. If you can replace the fear with some other emotion the conditioned response is extinguished and symptoms disappear. By forming a new relationship with our symptoms we take away the “danger” message and our brain loses interest in the symptom.
Once learned, withdrawal symptoms also become go-to distractions when we are overwhelmed. For instance, if we are repressing a forbidden emotion (e.g rage) the mind-body will produce or amplify a learned symptom to distract us from the emotion, which is a greater threat. This can be seen most dramatically in patients of the famous NYU rehabilitation physician Dr. John Sarno who had great success treating low back pain. A core component of his therapy was journaling about repressed emotions. He also acknowledged the existence of conditioned responses.
So now that I’ve described how 1) fearful attention, 2) conditioned responses, and 3) repressed emotions may play a role in protracted withdrawal lets look at the world of the person who is experiencing protracted withdrawal. I’ll use myself as example…
One day I was a functioning graduate student and a few months later I was experiencing severe cognitive issues, brain zaps, mood swings, terror, insomnia, twitches/tremors/jerks, depression, anxiety, hypersexuality, severe stress intolerance, derealization, etc. I was living in terror and it would be an understatement to say that I was highly focused on my body. Hardly a minute passed when I wasn’t scared to death, posting on internet forums, or trying to find a treatment. This is the fearful attention, the perseveration, the preoccupation that I believe drives the syndrome.
I also experience rage toward my doctors and my family who didn’t seem to care, understand, or believe me. I was losing my career, there were extreme financial stresses, and the world had the nerve to gone on without me. This rage was so overwhelming that my brain produced the symptoms above to distract me. Again, because these symptoms are learned and possess their own underlying neural circuitry they can be called up at any time. The are “go-to” distractions that are always available and the more we “fearfully attend” to the sensations the more severe and entrenched they become.
With respect to treatment. Healing happens when…
1. We believe in the mind-body diagnosis thereby reducing the terror and the “danger” coding that I mentioned above. If you can see the syndrome for what it is you are no longer damaged. There is a way out and this dampens the “terror physiology.” Your fate is your own hands and your stresses begin to melt away. You possess a greater sense of control.
2. We reprocess the symptoms of withdrawal by regarding them simply as sensations. When we learn to self-soothe ourselves while experiencing symptoms. When we surrender.
3. When we “think psychologically” rather than physically. Why are my symptoms getting worse right now?
3. When we shift our attention away from our bodies and back toward life.
4. When we live our life fully WITH the symptoms.
5. When we journal about our relationships, traumas, and present days stresses. If intense emotions are experienced fully and processed they don’t are no longer threatening and there is on need for symptom distraction.
With the above efforts we dismantle the pathophysiology of PAWS and make new neural pathways.
In short, I believe that the most severe, chronic, and tragic cases of protracted withdrawal can be healed using the above conceptual and treatment framework. There’s a lot more to it but I wanted to at least share a few of my thoughts and hope this stimulates your thinking in some way. Thank you for all that you do!
Hi It’s both a triumph and a sadness that it took you 20 years to get to an %80 recovery. Which symptoms do you have left – are they more retractable for some reason? I wonder how the PAWS theory would explain that many do get well using tapering ie drugs not psychological approaches ,albeit we may have different ways of dealing with trauma.? (It seems similar to the dangerous psychosomatic approach) Some more stoical some more sensitive etc- but the symptoms don’t seem to depend on personality or even environment as people ffrom all walks of life report similar adverse effects. The PAWS approach puts too much blame or responsibility on the person going through a fearful hellish state caused by not only drugs but the persons who prescribed them or the bodies who legitimised their ignorant prescribing and consequent refusal to acknowledge the consequences. We are human beings with bodies we care for – they have been damaged and anger is legitimate and necesary if progress is to be made .
If one can get past the “it’s all in your head” connotations, this might be really useful. I’m wondering if those of us who have felt so completely betrayed and violated, as well as helpless to stop it from happening to others, (deep rage with no outlet) might have more severe and protracted cases?
Some Native Americans believe that part of their trauma recovery involves the recognition of and responsibility taken for the trauma by the US government and they have asked for an apology. The apology came a few years back but I don’t think it was ever uttered but was instead buried deep in a lengthy piece of legislation. Some people wonder if traumas such as these can be healed while the injustice is still ongoing? I’ve come to a point where it’s significance seems more spiritual than physical or mental. You don’t just trip up over something like this indefinitely unless there are things to be learned or ultimately gained. Everybody’s got something they’re dealing with. For me I guess it’s this.
Dr Michael Miller’s post reminds me. Beware of the Medical Student Syndrome. https://www.psychologytoday.com/gb/blog/in-excess/201609/brief-look-medical-student-syndrome
Even a good proscribing doctor should always go to another doctor when s/he’s ill, so that his own subjectivity and imaginings don’t cloud the issue. I keep notes, so that I can tune out and stop analysing them after the introspection of my ME/CFS symptoms has finished.
As poster annie points out though. Tuning out is not an available option when in severe withdrawal. An analogy of the impossibility could be likened to having the amplifier of a public address system turned up so high, that the howl of positive feedback is bouncing back off the walls, so even moving the microphone further away and around the room doesn’t bring relief. Different techniques are need here, to shield the Will Power from the cacophony and to grow the room bigger. It was the Drugs made one’s room smaller in the first place.
There is a great deal here that implies ‘rational thoughts’..
Much respect to the doctor to deciphering ‘fight or flight’ with even a tinge of CBT..
My point of view has always been that during protracted withdrawal, rational thought often flies right out of the window. So drugged up you can hardly breathe, bed bound for weeks and months, in a more or less comatose state, too terrified to even leave the bed unless someone is holding your hand to get you to the loo.
I agree with the fear, but I don’t agree how to rationalise that fear.
Rationalising the fear, seems to me, that you are well on the road to recovery from a severe withdrawal.
The fear, the akathisia.
These things defy all thoughts of self-protection.
This is why the intense agitation has led to so many suicides in all age groups.
Never forget, that pharma described akathisia as emotionally labile.
Akathisia surpasses fear.
Instant gratuitous relief with the hangings, the falling from tall buildings, the overdoses.
This cannot be explained away with an over confident assumption that can be rationalised with ‘fear’ as an alibi..
To repeat what I said recently, Stewart Dolin jumped in front of a train.
Davie Carmichael killed his 11 year old son.
60 mg of Paroxetine totally disrupting any logic towards anything.
Donald Schell blasting almost his entire family apart.
A total and sudden reaction to Paroxetine.
Talking about fear is all well and good.
But, the Russian Roulette of certain products on certain people will never explain away the ‘lack of fear’ that induced these people their impulse and took their lives.
Not many doctors appear here because most doctors are hesitant to speak up.
I applaud the reasoning for yourself but when you are completely addled with protracted withdrawal and your own doctors are pushing you not to trust yourself, there is a long way to go to get any answers that justify anything that is as clear cut as ‘mind over matter’ …
It all matters to all of us, so all of us will undoubtedly be listening to those who have heralded their own way out …
What ‘kickback’ do many receive form drug induced damages?
I would certainly like to take this opportunity to challenge Dr Michael Millers’ theories in regards to, what he has quoted:
Essentially, I believe that the symptoms are “learned.” That through repeated “fearful attention” to the symptoms and sensations that they are learned and exist as a sort of neural memory with no actual tissue damage.
Not every medical malady fits this model of medical injury.
If we alter our thought process, everything will be ‘hunky dory’ and all our fears and anxieties surrounding our health issues will become a thing of the past, will somehow mysteriously melt away and we shall all be healed psychologically as well as physically.
I wish that we could all manifest healing through this ‘splendid model!’
After twenty years, that is: if you are fortunate to not be ingesting any medicines, it is indeed, a natural process for some type of healing to take place.
Depending on what medications or procedure you were prescribed/endured, one will never truly know the extent of damage, which has occurred.
Do I feel like being hit by a bus, some mornings, when I get up?
If I change my mindset and think positive, some ‘fairy Godmother is going to sprinkle gold dust’ all over me and all my physical ailments will mysteriously disappear. I am certainly waiting for this day to come…………..
Sadly, permanent damages do not have a will of their own and I would love to be healed of some of my physical ailments, in a myriad of positive thoughts ~If it were this easy, Michael, I am sure we would all be dancing with joy!
As the years go by, cells and mitochondria, have the ability to replicate and heal (this I believe) and if we are fortunate, we may be left with no health maladies or a few residual health issues, which we have to learn to accept and live with.
If fear keeps many of us in a state of not being able to heal, I have to ask myself the question:
What do I get out of feeling the way I do?
Is it for: attention, sympathy, acknowledgement or withdrawing from life?
If anything, the power of good health is something that cannot be willed into something that is permanently damaged, no matter how much positive thinking, one tries to master.
I do know that steps towards mental healing include:
– staying away from toxic people and circumstances
– finding a new ‘joie de vivre’ by finding something that ignites one passions. (Some experts say that if you find a passion that makes you excited , it puts a new spring in your step and in that moment distracts you from whatever physical/mental challenges you have.
– Trying to be realistic and do whatever you can in each given moment
– Don’t be too harsh on yourself, if you are unable to do the things you were able to do before the injury
– Reading/writing expands the neurons to heights we were unable to achieve before we got sick. I exercised the mental neurons to compensate for all the other parts of my body which have let me down.
Challenge me Michael on the following, you have stated:
In short, I believe that the most severe, chronic, and tragic cases of protracted withdrawal can be healed using the above conceptual and treatment framework.
I like to think that if I surrender to whatever may come that I will no longer have to worry about how I feel in the morning.
Being alive, is one thing and surrendering to what life has to offer with our new insights, is another.
When life throws me a curve ball, it reminds me that I am ALIVE however, when I have too many of them, I am gently reminded of how life can really be!
Yes, the traumas get me down but the PASSION is somehow, there, lurking in the background, waiting to gently unfold. Being a lone wolf, in all this journey to get where I am today, has been no easy feat!
The solution, given time, is to embrace all you have been through and when you find something you are passionate about, you learn to accept things for what they are!
You can not escape the emotional power of “Being Alive.”
Thank you immensely Annie, for putting your case forward, on behalf of many of us, with such conviction and sureness.
Permanent damages do not have a will of their own!
We do need to remain positive and focused.
It could be telling the scandal of prescription drugs – which goes back even longer -the ‘failings’ attitudes of med professional and regulators are exactly
the same. Have sent e mail to email@example.com who did a good piece on it a few days ago. with Study 329 attached. Zilch response so far. No surprises there.
A generation of women betrayed: Thousands were harmed by THREE health scandals – mesh implants, pregnancy test drug and epilepsy treatment – which saw agonising symptoms dismissed as ‘women’s problems’ by doctors, report reveals
Inquiry said lives ‘catastrophically affected’ by mistakes made with 3 products
It criticised NHS, private health firms and regulators for failing to spot the signs
Baroness Cumberlege, former health minister (who it seems did nothing when she was health minister)who led review, called for reforms..(Let’s not hold our breath )
Report gathered evidence from hundreds of families affected by the disasters
PUBLISHED: 00:01, 8 July 2020 | UPDATED: 01:50, 8 July
Tens of thousands of women and children were ‘catastrophically’ harmed by three avoidable health scandals, a damning report concludes today.
It says crippling symptoms were dismissed as ‘women’s problems’ by intimidating or arrogant doctors and surgeons. Patients who complained faced an ‘unresponsive and defensive’ healthcare system.
The inquiry said lives were ‘catastrophically affected’ by mistakes made with three different products: pelvic mesh implants, a pregnancy test drug and an epilepsy treatment.
It criticised the NHS, private health firms and regulators for failing to listen to patients or spot the signs when things went drastically wrong.
The decades that led to a medical debacle…..from 1950’s to 2020
2003: UK health watchdog NICE says only surgeons should operate, with procedures and outcomes audited (They are still going to be allowed to use a version of it)
2011: US watchdogs issue safety warnings and legal actions start
2014: Scotland suspends mesh procedures amid more safety concerns
February 2018: UK Government launches safety review
July 2018: The review calls for a halt to the use of mesh to treat urinary incontinence
2019: NICE says vaginal mesh implants can be offered again by specialist surgeons
July 2020: Review led by Baroness Cumberlege demands public apology and calls for national database for mesh surgery and specialist centres for removal
The scandal unfolded over many decades. Baroness Cumberlege, the former health minister who led the review, called for sweeping reforms, including an overhaul of the Medicines and Healthcare Products Regulatory Agency, which polices the safety of drugs and medical devices.
She also urged the Government to appoint an independent patient safety commissioner. An official response to her recommendations is expected in Parliament today.
The inquiry gathered evidence from hundreds of families affected by the public health disasters, some dating back over 60 years.
It examined the use of pelvic mesh, the hormone pregnancy test drug Primodos and epilepsy drug sodium valproate.
In a letter to Health Secretary Matt Hancock, Baroness Cumberlege said patients had been let down by the entire health system – from the NHS to manufacturers of medical equipment.
‘I have conducted many reviews and inquiries over the years, but I have never encountered anything like this – the intensity of suffering experienced by so many families, and the fact that they have endured it for decades,’ she said. (She needs to do the same for people harmed by psych drugs – will she?)
‘Much of this suffering was entirely avoidable, caused and compounded by failings in the health system itself.
‘The first duty of any health system is to do no harm to those in its care, but I am sorry to say that, in too many cases concerning Primodos, sodium valproate and pelvic mesh, our system has failed.
‘We met with people, more often than not women, whose worlds have been turned upside down, their whole lives, and often their children’s lives, shaped by the pain, anguish and guilt they feel as the result of Primodos, sodium valproate or pelvic mesh.
‘It has been a shocking and truly heart-rending experience. We owe it to the victims of these failings, and to thousands of future patients, to do better.’
The 277-page report examined how the health service responded to concerns over the three treatments, with evidence gathered from more than 700 families over the past two years.
Up to 100,000 women were given plastic mesh implants, in many cases to treat incontinence caused by pelvic injuries suffered in childbirth.
The review found thousands of women could have been spared life-changing complications if health watchdog NICE’s guidance had been properly followed, for example by allowing only experienced surgeons to carry out the procedure and keeping a national record of patients. (Hollow laughter
Primodos, a pregnancy test introduced in the 1950s, is suspected to have caused miscarriages and brain damage, heart defects and shortened limbs in children – a claim disputed by its manufacturer. Baroness Cumberlege said the thousands of patients who did voice concerns were simply dismissed.
She added: ‘We have found that the healthcare system – in which I include the NHS, private providers, the regulators and professional bodies, pharmaceutical and device manufacturers, and policymakers – is disjointed, siloed, unresponsive and defensive.
‘It does not adequately recognise that patients are its raison d’etre.
‘It has failed to listen to their concerns and when, belatedly, it has decided to act it has too often moved glacially.
‘Indeed, over these two years we have found ourselves in the position of recommending, encouraging and urging the system to take action that should have been taken long ago.’
Mesh surgery was paused when the inquiry was announced by former prime minister Theresa May in 2018.
The review noted that the true number of patients harmed will never be known. It called on the Government to apologise to victims and set up a ‘redress agency’.
Other recommendations include a national register of all patients fitted with medical equipment in future and doctors being forced to declare any financial interests on the General Medical Register.
Health minister Nadine Dorries paid tribute to the victims and said the health system must learn from those it failed.
She added: ‘I want to pay tribute to the patients and families whose lives have been turned upside down by mesh, sodium valproate and Primodos, and to thank them for their brave contributions to this report.
‘While the NHS is a beacon of brilliant care and safety in the majority of cases, as this report demonstrates, we must do better. Our health system must learn from those it has failed.
‘We will now give this independent review the full and careful consideration it deserves.’
My marriage and job didn’t survive
Complications from a mesh implant forced Debbie Cox to retire early from teaching.
In 2001, she was fitted with mesh after a prolapse following childbirth. For five years, she says she was ‘fine’ but then started to experience side effects including bladder and pelvic pain.
Miss Cox, 56, from Tyne and Wear, said that for almost ten years her pleas for help went largely unanswered.
Medics tried various treatments but nothing worked.
Around the same time, her marriage of 26 years ended, which she partly attributes to her health problems.
The mother-of-two said: ‘If I had been told that these are the potential risks of this mesh being inserted and that over time, it could erode, move, cause extreme pelvic pain, frequent urinary tract infections or cause immune issues, I would never have agreed to have this done.’
Miss Cox had a full removal in March. ‘And only four months on, the difference is outstanding,’ she said.
I couldn’t even sit without pain
When Madeline Marchand was told the simple procedure would solve all her problems, she was sold.
The retired estate agent had the mesh implant fitted in 2010 after suffering incontinence.
But the surgery, which was carried out privately, went wrong. ‘By the time the evening came, at which point I was supposed to be home, I was bleeding hugely,’ she said.
‘The surgeon had to be recalled from his home in the evening,’ she added.
Mrs Marchand made many return visits, in so much pain that she could not stand or sit without discomfort.
The 70-year-old from Kingsbridge, Devon, lived like this for years until it was discovered that the mesh had damaged her bladder.
She now struggles with even simple pleasures – such as gardening.
She said: ‘The pain in the groin is acute, the whole region is numb, and whilst I can walk, any bending down, gardening, or anything which extends the right leg, is out of the question.’
Pregnant mothers not told of risks
By Kate Pickles, Health Correspondent for the Daily Mail
Hundreds of babies are being born each year to mothers who were unaware their medication could harm them in the womb.
It is thought that as many as 20,000 infants were badly affected by the anti-epilepsy drug sodium valproate. Regulators knew of the risks as far back as 1973 but it was not until 2015 that clear warnings were published.
Even now, some women are taking the medication while pregnant without any knowledge of the risks, the Independent Medicines and Medical Devices Safety Review found.
It said: ‘This means that babies are still being born today – estimates suggest hundreds a year – exposed to sodium valproate despite the risk being well recognised and undisputed.’ The report concludes that it took ‘too long’ for the healthcare system to respond to the dangers.
Hundreds of babies are being born each year to mothers who were unaware their medication could harm them in the womb (file photo) +4
Hundreds of babies are being born each year to mothers who were unaware their medication could harm them in the womb (file photo)
Research suggests that one in ten unborn children exposed to the medication is likely to suffer a physical birth defect such as spina bifida, hare lip and cleft palate, heart problems and limb defects. Around 40 per cent will have a developmental delay or autism.
But the inquiry found the healthcare system has failed to ensure every woman of child-bearing age on sodium valproate was continuously monitored, advised of the risks and aware of the Pregnancy Prevention Programme.
The review sets out how the drug was a known teratogenic – a medicine harmful to a developing foetus – in animals at the time of licensing.
The authors of the report recommended the NHS send advice to all women of ‘child-bearing potential’ who are taking the drug.
Susan Cole, of the campaign group Valproate Victims, said: ‘It’s quite overwhelming to me that 50 years after valproate was first used we have at last been heard. This review should be shaking up the pharmaceutical industry and addressing the harm done but it has shown to have been bogged down against its will, in addressing the inadequate systems within the UK’s healthcare bodies and organisations.’
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hi everyone I had some questions 1-can this condition happen when for the second time you take the same SSRI for a period of time (Celexa 20m for 1month ) that you did take before (Celexa 20m 6month) and didn’t get any pssd from it 2-is it possible that your pssd start months after you stop the SSRI 3-even if you don’t use SSRI any more can your pssd become worse as time passes
Following on from the comments by the person David Healy has quoted about Olanzapine withdrawal and his discoveries regarding Vitamin C, I cannot resist a little cheer of joy. That this person was even allowed to mention Vitamin C here is a triumph.
I have been using Vitamin C for tempering down adverse effects from anything that seems to cause me an allergy reaction, (and God knows, there have been plenty of them, tinned tomatoes recently). Vitamin C also definitely raises the oxygen level in my blood, I have tested and re-tested this by using a finger oxygenation clip, and taking readings before and after taking 500mg of Vitamin C. If that’s the case, why are patients with Covid not being told about it when they first become ill, or even better, suggest they do as my husband does and take a 500mg tablet every day to give himself the best possible chance of being in prime condition to fight any infection, As the Olanzapine withdrawing person says, so long as you don’t take stupid massive amounts of it, any that the body doesn’t need will be excreted anyway. Wonderful for preventing constipation. But be aware that if you take it alongside medication (like paracetamol) it can add to the strength of the medication, so I’d suggest only take it on its own and drink plenty of water during the day, and with it.
I feel an immense sense of frustration that most doctors are so negative about it. There is an account of a case of a farmer in New Zealand who was dying of swine flu and was saved by injected Vitamin C because his three sons insisted that the doctors just try it, before his life support machine was turned off. I’m sorry I don’t have the link for this, but the case was a sensation in New Zealand and Australia.
For heaven’s sake, WHY do we not have any controlled trials of the effectiveness of Vitamyn C? Presumably because no one will make money out of it. For me it’s the world best kept secret and I’m just so grateful that I discovered its effectiveness years ago. It desperately frustrates me that so many doctors cynically dismiss it.
Well, looky here Heather
Pages 1 and 2
‘Blarney about lack of science’
Maybe there is something in it..
Annie, you are the most amazing sleuth! Thank you SO much for finding this account of the farmer’s recovery on Vitamin C! I do hope everyone reading this will be as fascinated as I am; I’ve been interested in the use of vitamin C for various health issues for about 20 years, and only one (wonderfully forward thinking) GP ever agreed that it worked, although I’ve used it safely and effectively for years.
I’m supposed to have a condition called mastocytosis (typified by one large freckle on the skin) which means I react badly to a whole plethora of medications and foods. I react badly to antihistamines so Vitamin C is what I’d use when others use them to take down a bad reaction like a bee sting,. My most recent bad reaction was to omeprazole and I was tested by a top hospital specialist in B’ham whilst he was finding a contract X-ray medium that could safely be used for me for an ERCP for gallstones. He checked the omeprazole and yes, sure enough, I’m allergic.
Why I am so reactive to all these things? I had anaphylactic shock from injected iodine dye from an X-ray in 1974. My mother didn’t use medications and her family were all doctors. But grandad belonged to the sensible ‘let’s figure out what’s wrong’, listening, brigade, he was never a skeptic. He was a medical man of his time, he always believed that if you gave nature the best support you could, it would eventually heal you. He watched me eating chocolate when I was about 4 and the way my skin reacted and how livery it made me and he told my mum, ‘chocolate is poison to that child’. Shame, because I adore chocolate. But I know it’s not good for me, so I’m better never eating it. But doctors like him practised in the olden days, did their own dispensing of simple remedies, and Big Pharma and NICE had never been imagined!..
Do look at the film from Annie’s link, particularly the utterly laughable health expert who insists the farmer could not have got better from the Vitamin C use, anything, apparently even a bus going past could have made the difference! I sense fear amongst doctors about this simple remedy, OMG, what if it works! We might not need half of our expensive medications. And OMG, what if for years we’ve poo-pooed this and we’ve missed something really simple, obvious and incredibly valuable. Dr Healy, what about RxISK setting up a trial?
When you are in the midst of protracted withdrawal like Pogo explained, nothing gives you peace.
You have to ride it through the best way you know how.
Like David Healy stated there is no right way of tapering because what may work for one may not work for another. Through trial and error, the sufferer may know what is right from them when slowly tapering.
It is hell when one withdrawals cold turkey and then some clinicians may add more cocktails to the equation which may make health matters worse.
One has to be very careful when making recommendations because everyone’s medical history and metabolism is different.
Once you are out of the Tsunami of unforgiving, relentless, painful suffering, if you are fortunate you can regain some normality. (That is if you are not ingesting other medications!)
When you have ME/CFS, this is another devastating condition one has to accept.
Sadly, it is a disability that cannot be seen however, the person suffering from it knows what they have to deal with.
Western medicine has a long history of hiding the damages many procedures and medicines induce.
Do medical journals ever state the truth about HRT and the devastating effects some women have to endure whilst they are on them or what they do to the well-being of many women for decades to come?
The pelvic mesh implants that Susanne mentioned, for vaginal prolapse, have caused a lot of unnecessary misery/pain and suffering to many females.
What about men who had the mesh for hernias?
With Western Medicines there are law suits left/right and centre.
Have we really evolved or improved the quality of life with modern materials and procedures?
Western Medicine may be prolonging lives however, how many souls can come forward and claim that their quality of lives are enriched as a result of it?
My life would have been totally different if I stayed away from Western Medicine.
If I had a crystal ball, I would have taken a totally different path.
It is what it is!
It is never too late to spare another soul!