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Petition calling for tapering kits in the UK


JamesMoore

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IGNORANCE IS BLISS FOR MOST OF THESE DOCTORS .its up to us to show and tell them the damage that's caused from these drugs ,its going to be a very long road for it to seep out.

All of us here is the start of the road and in the wider world there is serious criticism to psychiatry.

 

 https://www.madinamerica.com/2017/04/group-plans-protest-world-congress-psychiatry/.

 

Group Plans Protest Against the World Congress of Psychiatry

Alcohol free since February 2015 

1MG diazepam

4.5MG PROZAC.

 

 

 

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  • 4 weeks later...

Hi there keepinghope, I do appreciate you taking the time to feed back and I completely understand your frustrations and the anger you feel at the harm caused. You are right, there are many that are permanently damaged by ssris/benzos/opoids and other drugs but equally, there are many that, with the proper tapering support, could come out unscathed from this. We need to represent the whole community as best we can. The podcast and the petition have their place in raising awareness but I've never pretended that they were a solution or that they would change anything on their own. I am all too aware of my limited abilities in this regard but they do have a place in raising awareness of damage and harm. You have every right to feel as you do and every right to take action that you feel is appropriate.

 

We also have to realise that many of these campaigns won't benefit us but will benefit people in the future. There is change in this but the wheels turn very slowly. There is room in this campaign for those that want the damage recognised and for those who want help for the future, we all come at this from slightly different angles and different places. As for the doctors, most are so frightened of being sued that they won't engage with anything that admits harm, not just for antidepressants but other drugs too. It's a difficult situation to challenge, but that doesn't mean we shouldn't try.

 

It's not a direct comparison of course, but there are many that are permanently damaged from drinking and from smoking, and many fatalities too. For years the alcohol and tobacco manufacturers fought any kind of limitation to their actives and refused to help pay for treatment/rehabilitation and support. They now fund rehabilitation schemes like AA, their advertising is restricted and their products are seen much more now as harmful, none of that would have happened without people speaking out, sharing their experiences and demanding something was done. I don't expect Pharma to do this voluntarily, but I expect that, one day, legislation will compel them to act. Unfortunately I cannot say when this will be. I feel a need to try and do something, if I really thought about the futility of it then I wouldn't bother, at the very least, the people I have interviewed have told me that just sharing their stories has helped them. At this stage, that's good enough for me.

 

I am so sorry to hear of you experiences. I do hope that you continue to listen to the podcast but I understand if it just makes you more angry and frustrated, that certainly was not the intention when putting it together. My very best wishes to you and thank you so much for sharing your views with me, it means a great deal.

 

You're right James, we should try, and I'm sorry if I came across as belittling what you were doing at all - I greatly admire what you're trying to do and I have been listening to the podcasts - I wish I had your motivation! As someone else on here said, I've been especially enjoying the personal history podcasts for the sheer fact that they make me feel a bit less alone. If you're looking for anyone else to share their story I'd be very much willing to, and if it can help just one person it will be worth it. I have a bad tendency to look at the big picture with all it's obstacles and immediately give up, whereas I think you're doing the right thing, small steps to eventually grow a bigger movement/awareness, it's a tortoise and the hare game. 

2002 - Prescribed fluoxetine 20mg for mild situational depression and anxiety. Over the years also briefly swapped about on citalopram, sertraline and venlafaxine during poop out. 2012 - Cold turkeyed fluoxetine. Within 3 months was suffering from aggression, anxiety, panic attacks and paranoia. GP put me back on tablets as I was 'relapsing'. I didn't know anything about WD then. Jul 15 - Wanted to quit fluoxetine again so tapered off (skipping doses) over 6 weeks under advice of GP. Aug 15 - Last fluoxetine dose end of August 2015. Dec 15 - Had my first real crash after discontinuing. Found this site. Aug-Dec 16 - Signed off work because of a herniated disc & severe sciatica. Prescribed diazepam (took for 6 days and got WD symptoms on stopping; nausea, morning cortisol spikes, anxiety, anger) and codeine which I was on for 4 mths. Can confirm - opiate WD is nasty but nowhere near as bad or prolonged as SSRI WD!
Withdrawal symptoms have included: extreme anger and irritability, lethargy, depression and weepiness, anxiety, stomach upsets, loss of appetite, excessive sweating, muscle and back pain, insomnia, cortisol surges, akathisia, inability to cope with stress.
Things that help: herbal tinctures (rose, lemon balm, chamomile and skullcap), seaweed baths & epsom salt baths, fish oil and magnesium.

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Hi keepinghope I agree with every letter .there really is no end to the madness and ignorance of human beings. On a positive note at least us on this site are making an effort to change and set a path of difference we need to hold on to that.

I'm disgusted by doctors ,I would never judge them personally but I've told my partner I can't be in the company of any of them and she totally respects that .

There's a serious societal snobery going back centuries when it comes to these professions and this has to change ,we believe what they tell us,next generations need to be educated correctly to distinguish between fact and fiction .

 

The problem is these doctors can't see the wrong ,they learn in college and that's it and who sponsors the college,big pharma ,I'm laughing here it's so painfully funny (I've a dark sense of humour),and they say Scientology it's nuts .

Take care and always keep strong

PB

Alcohol free since February 2015 

1MG diazepam

4.5MG PROZAC.

 

 

 

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  • 1 year later...
  • Administrator

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I like the principle of these tapering strips, but I have two reservations about this particular study. I'll post them in the appropriate thread about that paper.

 

 

 

2005 St John's Wort / 2006-2012 Lexapro 20mg, 2 failed attempts to stop, tapered over 4.5 months in early 2012

January 2013 started Sertraline, over time worked up to 100mg

July 2014 Sertraline dropped from 100mg to 75mg, held for six months, slower tapering until 2019 22 Dec 3.2mg

2020 Sertraline 19 Jan 3.1mg, 26 Jan 3.0mg; 1 Mar 2.9, 7 Mar 2.8, May (some drops here) 24 May 2.5, May 29 2.4, June 21 2.3, June 28 2.2mg,  July 4 2.1mg, July 24 (or maybe a bit before) 2mg, early Nov switched to home made suspension; 29 Nov 1.8mg; approx 25 Dec 1.6mg)

2021 Some time in about Jan/Feb realised probably on more like 1.8mg and poss mixing error in making suspension; doses after 10 Feb accurate; 10 Feb 1.6mg; 7 Mar 1.4, continued monthly

10% drops until 1mg, then dropped 0.1mg monthly.

May 2022,0.1mg, now dropping 0.01mg per week

29 August 2022 - first day of zero!

My thread here at SA: https://www.survivingantidepressants.org/topic/1775-bubbles/page/21/

Current: Armour Thyroid

 

 

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@JamesMoore I found this article. Are tapering strips now available in the UK?

 

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

The Pharmaceutical Journal 12 JUL 2017 By 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.

 

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.

MHRA concern

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.

Dutch initiative

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.”

 

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.

....

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 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.”

  • 13 July 2017. 17.40. This story was updated to include comments from Paul Harder and James Moore.
 

 

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hi @Altostrata thanks for your message. Tapering Strips are available in the UK and it is perfectly legal to import medicines from Europe to the U.K. for personal use, pre Brexit anyway. The laboratory involved, Cinderella Therapeutics, have been investigated by the MHRA and found to comply with all legislation, this link tells you more..

 

https://www.pharmaceutical-journal.com/news-and-analysis/news-in-brief/dutch-tapering-kits-website-has-not-broken-law-mhra-concludes/20203849.article

 

However, to order Tapering Strips, the person requesting them must supply an NHS or private prescription signed by a registered doctor. There is also a cost for each strip of 28 days, but the Netherlands team provide them at cost, they make no profit at all for this work and the development costs were provided by Maastricht University. So it is a case of finding a sympathetic doctor/psychiatrist really. Also, while Tapering Strips are probably not much use for those that have been on the drugs for many many years, or for those who are particularly sensitive to withdrawal effects, I believe they are a valuable addition to the options available for people who would like to withdraw slowly. I am sure you have seen it already, but Mad in America recently wrote up the latest available Tapering Strip study:

 

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

 

If people would like more information, such as how long one can choose to take to reduce or what drugs the strips are available for, all this information can be found on the ordering forms available from the official website:

 

http://www.taperingstrip.org/

 

I hope that is helpful but do let me know if I can advise further. 

 

 

March 2012 - Prescribed Mirtazapine 15mg for anxiety and phobias

May 2012 - Jan 2017 - Had several brief spells on 30mg, none helpful, remained at 15mg

May 2017 - Started my withdrawal by transferring to liquid preparation at the same dosage (1ml = 15mg)

 

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Thanks @JamesMoore

 

I see that Maastricht University is the body that developed these. They're also the university, I think, where Will Hall is doing his antipsychotic study? They're obviously a university doing useful things for the likes of us.

2005 St John's Wort / 2006-2012 Lexapro 20mg, 2 failed attempts to stop, tapered over 4.5 months in early 2012

January 2013 started Sertraline, over time worked up to 100mg

July 2014 Sertraline dropped from 100mg to 75mg, held for six months, slower tapering until 2019 22 Dec 3.2mg

2020 Sertraline 19 Jan 3.1mg, 26 Jan 3.0mg; 1 Mar 2.9, 7 Mar 2.8, May (some drops here) 24 May 2.5, May 29 2.4, June 21 2.3, June 28 2.2mg,  July 4 2.1mg, July 24 (or maybe a bit before) 2mg, early Nov switched to home made suspension; 29 Nov 1.8mg; approx 25 Dec 1.6mg)

2021 Some time in about Jan/Feb realised probably on more like 1.8mg and poss mixing error in making suspension; doses after 10 Feb accurate; 10 Feb 1.6mg; 7 Mar 1.4, continued monthly

10% drops until 1mg, then dropped 0.1mg monthly.

May 2022,0.1mg, now dropping 0.01mg per week

29 August 2022 - first day of zero!

My thread here at SA: https://www.survivingantidepressants.org/topic/1775-bubbles/page/21/

Current: Armour Thyroid

 

 

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Thank you, @JamesMoore. In my correspondence with Dr. Groot, he said the length of taper using the strips is very flexible. He said he learned from this site that people might need much longer to taper from paroxetine, for example.

 

One might start out with a month trying the rate of a 6-month taper, and if that's too precipitous, the next month get a prescription for a strip designed for a 10-month taper. On page 8 of the tapering guidelines (pdf download):
 

Quote

 

4. Stabilisation

An additional and unforeseen advantage of the development of tapering strips is that it is now possible to start the tapering of drug doses down from all possible doses, and to prescribe them in all possible doses, including doses that differ from the standard registered doses available at the pharmacy (Figure 3).

 

 

 

 

For Dr. Groot's tapering curves, see

 

Is that your understanding how this might work? If this is so, we might routinely recommend using tapering strips to people in the UK and Netherlands.

 

PS I added links to the related topics in post #1 of this thread.

 

On 9/1/2016 at 3:06 AM, JamesMoore said:

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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I know my pharmacist here in Australia can't get anything that isn't approved for use in Australia, but I wonder if it would be possible to import it for personal use. I think there are rules about bringing things in for some period - 3 months' use, maybe? I'll have to do some investigating.


I also wonder if they're doing really slow tapers like recommended here. Or if they would if requested.

2005 St John's Wort / 2006-2012 Lexapro 20mg, 2 failed attempts to stop, tapered over 4.5 months in early 2012

January 2013 started Sertraline, over time worked up to 100mg

July 2014 Sertraline dropped from 100mg to 75mg, held for six months, slower tapering until 2019 22 Dec 3.2mg

2020 Sertraline 19 Jan 3.1mg, 26 Jan 3.0mg; 1 Mar 2.9, 7 Mar 2.8, May (some drops here) 24 May 2.5, May 29 2.4, June 21 2.3, June 28 2.2mg,  July 4 2.1mg, July 24 (or maybe a bit before) 2mg, early Nov switched to home made suspension; 29 Nov 1.8mg; approx 25 Dec 1.6mg)

2021 Some time in about Jan/Feb realised probably on more like 1.8mg and poss mixing error in making suspension; doses after 10 Feb accurate; 10 Feb 1.6mg; 7 Mar 1.4, continued monthly

10% drops until 1mg, then dropped 0.1mg monthly.

May 2022,0.1mg, now dropping 0.01mg per week

29 August 2022 - first day of zero!

My thread here at SA: https://www.survivingantidepressants.org/topic/1775-bubbles/page/21/

Current: Armour Thyroid

 

 

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  • 4 months later...

Hi,

 

A petition has been started at the link below to 'Provide Tapering Strips for people who want to withdraw safely from antidepressant drugs' in the UK.

 

https://www.change.org/p/provide-tapering-strips-to-help-users-who-want-to-stop-taking-anxiety-depression-drugs/u/23162467

 

At the moment antidepressants are only available in tablet or liquid form on the NHS at doses that are too high for many people to safely taper off, leaving us weighing our own doses or making liquids ourselves. This is something the Dr's don't advocate but nor are they able to provide appropriate taper doses themselves.

 

More signatures are needed to put pressure on authorities to provide tapering strips and help people get off antidepressants, reducing the suffering of currently advised rapid withdrawal aswell as the burden of unnecessary long term antidepressant prescriptions on the NHS budget.

 

Thank you

Butterfly

2004- 2013 Citalopram 20mg

2012-2013- Diazepam 10mg, Amitryptiline (both for head injury) Cold turkey on diazepam amitryptiline and citalopram

2013 Dec-  Citalopram 10mg

2017 July- 7.5mg

2017 Nov 5mg

2018 Mar 2.5mg

2018 June 2mg

2018 July 1.5mg

2018 Sep 1mg

2018 Oct 1.16mg tablet

2018 Oct 11th 0.5mg liquid am, 0.58mg tablet pm, Oct 22nd 0.5mg liquid am, 0.47mg liquid pm, Oct 29th 0.55mg liquid am, 0.55mg liquid pm. Dec 15th 1.2mg tablet 

https://wordpress.com/post/butterflyhopedotblog.wordpress.com/10

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  • 5 months later...

Hello all I am now back on Venlafaxine again after an attempt to slowly come off this drug which left me with horrendous  suicidal thoughts and Crippling Anxiety and I am truthfully thankful to still be alive -  this was after my Pschyciatrist was pleased I had "successfully" weaned off them!! 

I don't know what country you all  live in but there is a big petition in the UK to take to Parliament which has nearly 8500 signatures already to provide 'tapering strips' to help people come off these drugs slowly and safely as worryingly even the GP's are unaware of the severe difficulty coming of these pschycotropic meds. The link to the petition is here , please feel free to share it.

https://www.change.org/p/provide-tapering-strips-to-help-users-who-want-to-stop-taking-anxiety-depression-drugs?cs_tk=Aj4Ygq1McKQ5N9FGllwAAXicyyvNyQEABF8BvNK8ze75FTuu8wjuUZaCKqU%3D&utm_campaign=9cb80c8025fa4fecbdbc2fafd355dae1&utm_medium=email&utm_source=petition_signer_receipt&utm_term=cs

Kindest regards

Davie

Hello, I was put on Venlafaxine around 2000 and tried unsuccessfully a few times to come off it as it did not help my depression much-  I used to take a small part of a tablet now and again ( around 20ml) when I had days with bad Anxiety which seemed to help! I was never able to tolerate the full dose on a daily basis. 

I  had a nervous breakdown in 2008 and was switched to Fluoxetine and also started Diazepam 5mg to be taken as required,  my health did not improve much and I was eventually referred to a Pschyciatrist in 2013 who diagnosed me with GAD and put me back on Venlafaxine starting on 75 mg XL increasing to 150 mg before switching me to 2x75 mg tablets which I could not tolerate very well and tried to come off them with disastrous side effects. My recent attempt to come off them I tapered from 75mg down to around 10 mg for the last two weeks ( this was over a two month period) I then made the jump from 10 mg to zero and felt clear headed and well for around 4 weeks until out of the blue I had a bad nights sleep , horrible Anxiety, worsening every day, suicidal thoughts etc.  until I took a 37.5 mg Venlafaxine tablet and felt the Anxiety decreasing within an hour or so, I am now back on Venlafaxine 75 mg XL and slowly recovering as my nervous system feels wrecked. I feel far worse generally now than when I first went to the Doctor for depression many years ago. I am still on Diazepam after 11 years but luckily I  only have a script for 20x5mg tablets around once a month and  never take them unless I have bad days of Anxiety, I also don't think they are as effective as they used to be! 

I voluntarily gave up Diazepam in October 2019 but was put on Lorazepam 1mg as required in November 2019 around the time my doctor agreed to reduce my 150mg XL to 75 mg XL In December I was hit with another reduction Withdrawal? And was put back on 150 MG XL caplule again along with Diazepam 5mg again  to take as required.

I am now on 150 mg Effector XL 

and have started Lyrica 25 mg twice daily since 31/1/ 2020 ( about a week) I have stopped taking Diazepam since I started the Lyrica.

Thank you all for your help and guidance

Davie

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  • 3 weeks later...
  • Moderator Emeritus

Change.org has a petition to the UK government to make Dutch- style tapering strips available on the NHS.

 

The petition needs 10,000 signatures to be put before parliament and currently has almost 9000.

 

Tis is a link to the site if you would like to sign.

 

 

https://www.change.org/p/provide-tapering-strips-to-help-users-who-want-to-stop-taking-anxiety-depression-drugs

 

Escitalopram 10mgs from mid 2007 ( can't remember exact date) to 11th Dec 2018

Fentanyl patches ( don't remember dose ) from Nov 2014 to 11 Dec 2018

Quit both cold turkey Dec 2018

Reinstated 3rd March 2019 2.5 mgs.

Updosed  8March to 5mgs and holding

25/11/19 Started taper 4.5mgs and holding

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner

If you are going through Hell, keep going. NCIS series 15, David MaCallum:rolleyes:

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Merged 3 topics about UK tapering strip petition/s.

* NO LONGER ACTIVE on SA *

MISSION ACCOMPLISHED:  (6 year taper)      0mg Pristiq  on 13th November 2021

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after); Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering from Oct 2015 - 13 Nov 2021   LAST DOSE 0.0025mg

Post 0 updates start here    My tapering program     My Intro (goes to tapering graph)

 VIDEO:   Antidepressant Withdrawal Syndrome and its Management

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  • 9 months later...
  • Moderator

I just received an email from change.org where James Moore talked about his meeting regarding Tapering Stips. This is what was said:

 

13 FEB 2020 — 

Following our letter to Matt Hancock to share our petition, I am pleased to say that Wendy Burn, President of the Royal College of Psychiatrists, generously accepted a request to meet to discuss tapering strips and our desire for more options for people who wish to taper off their medications gradually. The meeting was held on February 11 at the Royal College of Psychiatrists in London. In addition to Wendy and myself, also present were the Head of Policy and Campaigns for RCPsych, a representative of the Royal College of General Practitioners, the developers of tapering strips, Peter Groot and Paul Harder, and Mark Horowitz, a psychiatric researcher.

We had a very positive meeting and were encouraged by the good work going on, specifically on a withdrawal information leaflet for prescribers, which should be available this year. We discussed tapering strips and our desire to trial them in a small number of GP surgeries in the UK. While no formal commitment is yet possible, we were pleased to be able to explain how tapering strips were developed and share some personal experiences of using them.

I think we could all agree that providing gradual withdrawal options for those that need them and hopefully, in time, tapering strips, to sit alongside enhanced withdrawal guidelines is a good target to aim for.

Your signatures and support made this meeting possible. I am so grateful to you. Please keep sharing the petition and encouraging others to sign, it is hugely valuable to share stories and to raise the profile of this important issue. Thank you.”

 

 I thought it was very interesting and hopefully promising.

PREVIOUS medications and discontinuations: Have been on medications since 1996. 

 Valium, Gabapentin, Lamictal, Prilosec and Zantac from 2000 to 2015 with a fast taper by a psychiatrist.

 Liquid Lexapro Nov, 2016 to 31-March, 2019 Lexapro free!!! (total Lexapro taper was 4 years-started with pill form)

---CURRENT MEDICATIONS:Supplements:Milk Thistle, Metamucil, Magnesium Citrate, Vitamin D3, Levothyroxine 25mcg, Vitamin C, Krill oil.

Xanax 1mg 3x day June, 2000 to 19-September, 2020 Went from .150 grams (average weight of 1 Xanax) 3x day to .003 grams 3x day. April 1, 2021 went back on 1mg a day. Started tapering May 19, 2023. July 28, 2023-approximately .87mg. Dr. fast tapered me at the end and realized he messed up. Prescribe it again and I am doing "slower than a turtle" taper.

19-September, 2020 Xanax free!!! (total Xanax taper was 15-1/2 months-1-June, 2019-19-September, 2020)

I am not a medical professional.

The suggestions I make are based on personal experience.

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