Prescription compounded tapering strips for psychiatric drugs from the Netherlands

[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 July 6, 2017 by Shep
added bold

[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

By Clare Wilson

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.

[ikam]

Hi, I have just read this article... 

There is some hope... 

[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. 

[ikam]

http://www.pharmaceutical-journal.com/news-and-analysis/news/dutch-tapering-kits-website-investigated-by-dutch-health-care-inspectorate/20203376.article?utm_content=buffer85199&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer#FooterSearch

[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

[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. 

[Altostrata]

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

[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.

[powerback]

.http://www.taperingstrip.org/ I heard about  this site today after listening to our own james moore on peter breggins podcast today .ive had a quick look through .worth a look at it  .

PB

[bubbles]

An article on Mad in America about a tapering strip study. https://www.madinamerica.com/2018/05/tapering-strips-help-people-discontinue-antidepressants/#comment-131981

 

People successfully discontinued, but the average duration of tapering was 59 days, so I'd be interested to see how long they stay well afterward.

[bubbles]

This looks like the original article, but it's in Dutch http://docplayer.nl/58880844-Ontwikkeling-en-rationaliteit-van-taperingstrips.html

[bubbles]

Actually, it can't be the original article. This is, but I can't locate it.

 

Groot, P. C., & van Os, J. (2018). Antidepressant tapering strips to help people come off medication more safely. Psychosis. https://doi.org/10.1080/17522439.2018.1469163

[Cheryl]

I found this article quite interesting.

 

https://www.madinamerica.com/2018/05/tapering-strips-help-people-discontinue-antidepressants/

[Altostrata]

The paper, in English, is here Groot, 2018 Antidepressant tapering strips to help people come off medication more safely

 

Also see

 

Petition calling for tapering kits in the UK

[Altostrata]

FYI, here is the instruction and ordering form for agomelatine tapering strips:

 

http://www.taperingstrip.org/wp-content/uploads/2017/07/GMLT_bestel_GB.pdf

 

The first page:
 

Quote

Instruction for AGOMELATINE™

 

Please ensure you have the correct prescription and order form in front of you. There are several different order forms for

Antidepressants (24), Anti-psychotics (23), Sedatives (19), Anti-epileptics (7), Hormones (1) & Analgetics (4).

 

PLEASE READ CAREFULLY BEFORE FILLING IN THE PRESCRIPTION AND ORDER FORM

 

1. A sudden termination of treatment with agomelatine or a sudden reduction in dosage can lead to significant withdrawal

symptoms. To avoid this, the daily dose should be reduced in small steps gradually over a period of time. This can be done

using tapering strips™.

 

2. One or more tapering strips™ can be used to gradually reduce the dose of agomelatine to a desired lower dose or to zero.

If more than one strip is needed the final dose of the previous strip is always equal to the starting dose of the following

strip.

 

3. The treating physician should plan the tapering schedule together with the patient. It is not possible to predict the perfect

schedule for each patient. Some patients are far more sensitive to withdrawal symptoms than others, and some patients

cope with symptoms better than others. The risk of withdrawal symptoms and their intensity can be reduced by choosing

a more gradual tapering schedule. There are two options when choosing a tapering schedule:

• Variable - Choose a tapering schedule for the first 28 days only, then use the patient’s experiences and feedback to inform the remainder of the tapering trajectory. To do this only the black part of table 4 on page 4 has to be filled in. The experiences of the patient during the first weeks (withdrawal symptoms or not) can then be used to choose the tapering trajectories for the following strip(s) by filling in in the red part of the table 5 on page 5.
• Fixed - Choose a tapering schedule for the entire period of the dosage reduction. To do this, fill in both the black and (if applicable) the red part of table 4 on page 4.

4. Agomelatine tapering strips™ are only available on prescription. The signed prescription and order form is seen as a valid

prescription. After filling in the form, the treating physician should terminate any current prescription for agomelatine at

the local pharmacy.

 

5. In most countries, the costs of the medication in the tapering strips™ are covered by health insurance. Tapering and sta-

bilisation strips contain medication for a fixed period of 28 days, all strips have the same price. Tapering strip™: € 77.-;

Stabilization strip € 38.50 for a period of 28 days; Prices are subject to change, so please check before ordering.

 

6. Once the prescription and order form has been received by the Regenboog Apotheek, the tapering strip™ will be shipped

to the patient’s home address within a week.

 

7. A tapering strip™ contains 28 numbered pouches, with each pouch containing several tablets. The number of pills may

vary per day. The total dose of the medication reduces over time as the patient takes the pills in each daily pouch.

 

8. The patient starts their tapering schedule on a Sunday by taking the pills in the first pouch, numbered 028. By counting

down, the patient finishes four weeks later on a Saturday, by taking the pills in the last pouch, numbered 001. By doing

this, the patient can easily keep track of how many doses and days are left.

 

9. Each pouch of the strip is printed with the sequence number, the colour and strength of each tablet, the total number of

tablets and the name of the pharmacy.

 

10. STABILIZATION: A stabilization strip can keep the patient on a fixed dose for a desired period of time. Such stabilization

may be necessary if tapering appears to be going too fast for the patient, or the patient does not wish to reduce the dose

to zero, but remain at an optimal lower dose. The stabilization strip can be produced at almost any desired dose rounded

off to 1 mg agomelatine.

 

11. In some cases, the patient is currently using a dose that is higher or different from the starting dose of the available

tapering strips (see table 4 on page 4). These patients can also reduce their dose gradually by using customized tapering

strips™ for the first part of the taper (see table 4 on page 4).

 

.....

 

 

Interesting that instructions for stabilization are included.

[Gryffe74]

Not sure if they have been discussed previously on here but may be helpfull for someone link below,

 

https://www.taperingstrip.org

 

Best regards 

[Devi]

Hello everyone,

 

Does anyone know anything about tapering strips or had any experience ordering them? 

https://www.taperingstrip.org/

 

Thank you.

Edited March 2, 2020 by manymoretodays
moved from introductions to tapering topic

[manymoretodays]

Hi Devi, @Devi

We've got this topic that you might find helpful.  I haven't had experience ordering them or using them, so not helpful in that regard.  Perhaps, someone will have, though.

And welcome aboard.

L, P, H, and G,

mmt

Edited March 2, 2020 by manymoretodays

[pinciukas]

On 3/1/2020 at 11:25 PM, Devi said:

Hello everyone,

 

Does anyone know anything about tapering strips or had any experience ordering them? 

https://www.taperingstrip.org/

 

Thank you.

My friend did. They are legit pharmacy in the Netherlands. Everything is good there.

[DutchMaddy]

For everyone reading this:try this pharmacie in the Netherlands. They can make every tapering strip you need. The smallest dosage ( Regenboogapotheek in Bavel the Netherlands)

 

https://www.taperingstrip.nl/

 

 

Edited October 27, 2020 by ChessieCat
reduced font size

[ChessieCat]

merged similar topics

 

[Gryffe74]

Sourcing Sertraline tapering strips in the uk

 

Hi Folks,

 

Has any of the UK members had any luck getting their GP to authorise the purchase of tapering strips from the supplier in the netherlands, im currently waiting on mine making a decision but its not looking likely even though i have offered to pay. Is there any other way to obtain these if your doctor refuses?

 

Thanks in advance

 

Edited November 20, 2020 by ChessieCat
added topic title

[Smokeandmirrors22]

On 11/20/2020 at 7:15 PM, Gryffe74 said:

Sourcing Sertraline tapering strips in the uk

 

Hi Folks,

 

Has any of the UK members had any luck getting their GP to authorise the purchase of tapering strips from the supplier in the netherlands, im currently waiting on mine making a decision but its not looking likely even though i have offered to pay. Is there any other way to obtain these if your doctor refuses?

 

Thanks in advance

 

Hi!

 

I’ve  been wondering the same thing. It’s such a shame that the NHS is so slow in adopting new methods, they don’t even have an official taper guidance for the GPs.

Good luck with this and let us know the outcome! 

 

I haven’t spoken to my GP about this personally but I was going to ask about the citalopram oral drops first as they are already available in the UK. I’ve been thinking about this, another option is to go through a private psychiatrist and ask them to write the prescription for this. However an initial appointment is about £320 without private insurance. 

[Gryffe74]

Hi,

 

Good news on the tapering strips, my doctor was ok with signing off the form and have now received the strips and am now well into my taper. The downside is I had to cover the cost for 2 x strips but I see it as worth it if it makes things more tolerable. I have had very little in the way of side effects using these strips as yet(now down to 5mg of sertraline) so fingers crossed things stay the same. My doctor actually had never heard of them and seemed genuinely interested in researching them. The benefit of the strips is they take the worry out of dosing as you taper down, I had previously tried the crushing tablets and making into liquid technique but found it labour intensive and also felt side effects coming on pretty quickly.

 

I will report back periodically to update anyone who's intrested on my progress.

 

Thanks  

[ChessieCat]

  

9 hours ago, DutchMaddy said:

@Altostrata  @ChessieCat @SebasI regret to inform you about the Dutch tapering clinic. It seems better than it is. They are going to do trials. So one half gets a placebo and the other half of the patients gets tapering strips. Our Dutch organisation for tapering in Holland is mad about it because we already know that tapering is necessary!  They rejected strongly to stop what they are planning to do and asked them  to “just” start helping them to taper. Because now one half of the people will do a CT with their AD with all the consequences from that 😪

 

[Manu1982]

I am thinking of using tapering strips to stop clozapine. Has anybody succeeded in it. Pls share your experiences

[Altostrata]

@Manu1982 I don't see any reasons why tapering strips would not work for a gradual taper off clozapine. The key is to observe your reactions to decreases and make the taper more gradual if you get withdrawal symptoms.

[benesh]

Hello  Altostrata and others,

I have been doing liquid compounding via local pharmacist of both generic Wellbutrin and lexapro since early 2021. 
Now for the million dollar question…..I am talking with my PCP this week and IF she is willing to write a script for tapering strips would that be wise? I am still far from the finish line given how slow I am now going.

I watched JamesMoore talk about his experience which prompted this question.

Thanks all for this site and all who regularly write. 
A lifeline to hope.

 

[Altostrata]

A prescription for tapering strips, which come from a compounding pharmacy in the Netherlands, probably would cost about $75 including shipping to the US. It's unlikely your insurance will cover this. It's up to you if you want to get your drugs from a compounding pharmacy in Europe rather than one in your city.

[benesh]

Thanks so much for the prompt reply. 
So my compounding pharmacy only does liquid that I know of. It sounds like I should talk to him about doing the tapering strips here? THAT would be wonderful. The cost each month for my liquid is about  $71. I provide the pills from the local giant food store/ pharmacy or it would be allot more expensive.

So perhaps another option that might be more precise than doing the liquid.

Once again you and your team are a blessing beyond words.

[Altostrata]

On 8/15/2017 at 11:20 AM, ikam said:

http://www.pharmaceutical-journal.com/news-and-analysis/news/dutch-tapering-kits-website-investigated-by-dutch-health-care-inspectorate/20203376.article?utm_content=buffer85199&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer#FooterSearch

 

This article is from 2017. Tapering strips have been cleared for prescription in the UK by the MHRA and can be ordered in the US, too, by prescription.

[Altostrata]

19 hours ago, benesh said:

Thanks so much for the prompt reply. 
So my compounding pharmacy only does liquid that I know of. It sounds like I should talk to him about doing the tapering strips here? THAT would be wonderful. The cost each month for my liquid is about  $71. I provide the pills from the local giant food store/ pharmacy or it would be allot more expensive.

So perhaps another option that might be more precise than doing the liquid.

Once again you and your team are a blessing beyond words.

 

They should be able to make custom compounded capsules as well as liquids. That pharmacy may not be very well equipped. You might look for another, better compounding pharmacy nearby or a mail-order compounding pharmacy that will fill your prescription, such as https://www.ppcpharmacy.com/compounding

 

A Google search can find compounding pharmacies in your state or country.

[Paquita]

I taper with the use of this pharmacy.

Unfortunately they are also not covered by insurance here. They are still fighting for it.

Insurance companies are a lot different here than in for instance the US.

(all basic and emergency healthcare, and insurance companies may not refuse anyone, everyone

has a right to be insured, basically you don't have to pay for dr visits, ambulance rides or hospital treatment

and most medications, unless ofcourse a monthly fee)

A lot is covered but not all medications. Basically it's cheaper to stay on antidepressants than

trying to get off of them. Unless you want to go cold turkey or start cutting doses yourself

which I read is happening a lot and what I also tried in the past. But that's not stable. Not even the liquid

because you will always have some residue left.

I really hope pharmacists around the world will start making tapering strips available.

Insurance companies still insist that withdrawal is something that last for a couple of weeks. Or that

cutting doses in half is the right way of tapering.

[SouthernFreeze]

Ok I just listened to the recent mad in america podcast with these guys , 70% success rate they reckon. I'm really keen to try these but I'm not sure if I can get them in nz. If anyone knows if it's possible and can save me a trip to the doctor in lockdown I'd be very appreciative. 

 

I have emailed them but no reply so far. 

 

 

[Paquita]

On 9/1/2021 at 8:53 AM, SouthernFreeze said:

I have emailed them but no reply so far. 

 

Which email? There are a few.

I do not know if they can be sent to NZ.