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Altostrata

Dutch organization is producing tapering kits

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Shep   
Shep

I'm adding a video that came out today with the first person to use Dr. Groot's tapering strips, in this case, for Valium:

 

Claire: The First Patient in the UK to Use Dr. Groot's Tapering Strips to Taper Valium - video - 6 minutes

 

From the YouTube description (note: not all of the links are in English, so you may need to use Google translate):

 

Dr. Groot, from the User Research Center of Maastricht University in the Netherlands, has invented "tapering strips" to help solve the problem that many who are experiencing normal dose dependence from prescribed psychiatric drugs are facing—that many of the medications don't come in liquid form or in small enough doses to taper properly.

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...

User Research Center, Project Tapering (in Dutch, work on English version of the website is in progress): https://urc.mumc.maastrichtuniversity...

List of drugs for which tapering strips are currently available (in Dutch, work on English version of the website is in progress)
*Note from Dr. Groot: "On this website, people can find ordering forms for all the available drug tapering strips. English versions will be available soon. 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...

Tapering Strip Developers to Take on Health Insurers: https://www.maastrichtuniversity.nl/n...

Sign the Petition for a Tapering Solution in the UK: https://www.change.org/p/make-pharmac...

 
Edited by Shep
added bold

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Altostrata   
Altostrata

From the UK's New Scientist:

 

https://www.newscientist.com/article/2140106-people-are-hacking-antidepressant-doses-to-avoid-withdrawal/

 

People are hacking antidepressant doses to avoid withdrawal

DAILY NEWS 7 July 2017

A patient-led movement is helping people taking psychiatric medicines to hack their dosing regimens so they can wean themselves off the drugs without any side effects. Now a Dutch website that sells kits to help people do this is about to launch an English-language site, triggering safety concerns among UK regulators and doctors.

 

Some people find it impossible to stop taking certain antidepressants and anti-anxiety medicines such as valium because, unless the dose is reduced very gradually, they get severe mental and physical side-effects.

 

The problem is these medicines aren’t sold in small enough tablets to allow for tapering. This has prompted some people to flout mainstream medical advice and use DIY methods for reducing their doses, such as grinding up tablets and dissolving them in water, or breaking open capsules of tiny beads and counting them out. The UK mental health charity Mind advises people who want to stop taking antidepressants of some techniques to try, but recommends they get advice from their doctor or pharmacist first.

 

To help people taper their dose more easily, a Dutch medical charity, called Cinderella Therapeutics,  creates personalised “tapering kits”, with precisely weighed out tablets in labelled packets that gradually reduce over several months. The website recommends people do this under medical supervision and must first receive a doctor’s prescription.

 

The charity has been sending out such kits since 2014, distributing around 2000 tapering kits for 24 different medications so far. Most of these were for people in the Netherlands, but a few kits have been sent to other countries, including the UK. The website is in Dutch, but an English-language version is being launched next week.

 

Its actions are legal in the Netherlands, although most medical bodies advise people not to buy medicines over the internet. “Although prescription-only medicines can be imported for personal use, self-medication is potentially risky and we advise against this,” says a spokesperson for the UK’s Medicines & Healthcare Products Regulatory Agency. “We will be contacting our regulatory partners in the Netherlands to make necessary enquiries.”

 

Withdrawal symptoms

An increasing number of people are taking antidepressants – about 1 in 10 people in the UK, for instance. Many people find antidepressants helpful, and even life-saving, but some struggle to stop taking them when they are ready.

 

Some people say that when they try to stop, they experience intolerable side effects. A study in New Zealand found that 55 per cent of people got withdrawal symptoms on stopping antidepressants.

....

Information leaflets that the drug manufacturers provide alongside the drug warn of short-term withdrawal effects, and doctors usually advise people to reduce their dose slowly. But even if people do that, once they stop taking the lowest dose of tablet available, some still get problems. Some people are told by their doctors that it is a relapse, even if it might not be.

One solution often proposed is to take one pill every other day, but some common antidepressants such as venlafaxine and paroxetine are broken down by the body within hours, so this method leads to drug levels in the blood fluctuating from one day to the next. Instead, people have begun swapping tips about how to taper their medication online.

 

Tapering help

[James] Moore tried cutting up his pills into smaller pieces but found the dosing was too variable and his withdrawal symptoms returned. “I was functioning one day and the next I would be in bed,” he says. He is now leading a campaign to make manufacturers make their drugs available in much lower doses.

 

[JamesMoore is a member of this site; see his topic Petition calling for tapering kits in the UK]

 

David Healy, a psychiatrist in Bangor in the UK, says people’s experiences of withdrawing from antidepressants can vary a lot. He helps those with severe symptoms by prescribing liquid formulations of their medicine, which they can measure out in small amounts. These formulations aren’t as widely stocked as their pill equivalents.

 

....Healy says most GPs refuse to prescribe such liquids because they are more expensive than the standard pills.

 

Pharmacist Paul Harder, who makes the tapering kits for Cinderella Therapeutics, says an unpublished survey by the charity found that about 80 per cent of users manage to completely stop taking their medicine. Another 10 per cent reduce it, but the rest return to their original dose. The average time people use the service taper for is two months, he says, but some people take up to seven months.

 

Tony Kendrick of the University of Southampton in the UK says another option for some people is to switch antidepressants to fluoxetine (Prozac), which is widely available in a liquid formulation. But some people feel they cannot switch.

 

Kendrick is investigating ways to help doctors tell the difference between antidepressant withdrawal symptoms and signs that a person’s depression or anxiety is returning. Withdrawal symptoms tend to start very quickly, often the first day a dose is missed, and disappear when the person returns to their normal level, he says. “A relapse usually takes weeks or months.”

 

A spokesperson for the Association of the British Pharmaceutical Industry did not wish to comment.

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ikam   
ikam

Hi, I have just read this article... 

There is some hope... 

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Shep   
Shep

 

Dutch website selling tapering kits for coming off antidepressants launches English-language version

 

The above article came out in the Pharmaceutical Journal yesterday, and they are getting the information wrong.

 

Quote

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.

 

This isn't true - it does require a prescription. 

 

JamesMoore, a member of SA who has the petition for tapering kits here: Petition calling for tapering kits in  and does a podcast on the Mad in America site posted this in the comments area clarifying: 

 

 

Quote

 

James Moore13 JUL 2017 13:42

I would like to point out that this article is factually incorrect, as is clearly stated on the website for Tapering Strips, a prescription from a doctor is required in all cases. Without a valid prescription, patients cannot order Tapering Strips. 

This is ground breaking and vitally important work and it is important that we report these details accurately.

For the correct information please visit http://www.taperingstrip.org

 

 

I have a feeling there may be a long, drawn out fight over this. 

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powerback   
powerback

very interesting the government watch dog investigating .the sceptic in me presumes there's an agenda attached to this ,a bit like the FDA in America looking after big pharma rather than its civilians .

if big pharma aren't going to listen about tapering kits ,obviously someone  else is .

PB

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mammaP   
mammaP
On 08/07/2017 at 7:12 PM, Altostrata said:

Pharmacist Paul Harder, who makes the tapering kits for Cinderella Therapeutics, says an unpublished survey by the charity found that about 80 per cent of users manage to completely stop taking their medicine. Another 10 per cent reduce it, but the rest return to their original dose. The average time people use the service taper for is two months, he says, but some people take up to seven months.

 

80% of people taper off within 2-7 months and 10%  go back to the full dose, 10% reduce the dose but don't get all the way off.  It is a start but still a long way to go. I wonder how many of those 80% stayed off permanently as withdrawal can kick in weeks or months after the last dose. 

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Altostrata   
Altostrata

I agree. Looks like 10% find reduction too difficult right off and go back on the drug.

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Bokart   
Bokart

I don't know if anyone has mentioned this... but you can indeed use their packages to do longer tapers. For example if you want use their kit to do 1 reduction monthly, buy 30 tapering kits and it will provide 30 tablets of each dose. Hope this helps :)

 

Hoping they start providing a way for customers to separately buy any dose in their kit in large quantities.

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