LAST CALL!

[[Li...]]

Go here for a July 18 update: 
https://benzobuddies.org/topic/279181-last-call-share-your-comments-benzo-tapering-guideline/?do=findComment&comment=3531850

As most readers are already aware, the coming week is an important one for members of the benzodiazepine withdrawal community.  This Friday, July 19 is the deadline for submitting public comments about the draft benzodiazepine tapering guideline funded by the US FDA. (For more information and resources about the draft guideline, go to: https://benzobuddies.org/topic/278818-urgent-we-need-your-help-by-july-19-draft-benzo-deprescribing-guidelines/ ).

One of our members shared her comments with me via PM earlier today.  She did such a fantastic job, I asked if I could share them on the public forum.  She graciously gave me permission to do so.

Her comments inspired me to submit comments of my own  —  I hope they will do the same for you!

If you would like to share your comments about the draft guideline on this thread, please do so.  Your comments may well inspire other members to participate in this important effort.

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I was placed on a benzodiazepine for over 20 years. I suffered a steady decline in health ranging from cognitive decline, gastrointestinal issues, balance issues, eyesight decline, neuropathy, social decline, agoraphobia, migraines, chronic fatigue and a host of other symptoms none of which could be explained via tests through multiple specialists.  All of this due to being in a state of tolerance for many years and not knowing it. 

My doctor led me in a taper process which was far too fast for my biology and this led to acute withdrawal while tapering. As a result, I was placed on an antipsychotic to ease withdrawal symptoms and to try to stabilize me. The antipsychotic led to severe, life-threatening Akathisia for 14 months. To date, I have been tapering this drug over a three-year period, and I have years to go to try to safely taper and recover from years of iatrogenic illness.

I have lost over a decade of my life due to long-term benzodiazepine use taken as prescribed in combination with a lack of education as to how to taper off this drug in a safe manner- a drug that is not to be prescribed for longer than two weeks. This class of drugs and the taper process has almost cost me my life on several occasions. 

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As needed use (PRN) can still be harmful. To believe this is a safe way to prescribe a benzodiazepine would be incorrect. Prescribing it as needed does not reduce the risk of physical dependency.  It can also place a patient in the position of experiencing drops in blood serum levels creating interdose withdrawal symptoms in between as needed doses. Often providers will see this as a worsening of a pre-existing condition instead of building tolerance to their as needed benzodiazepine.  Or, if the drug was used off-label, prescribers will assume they have a new condition developing.  This often leads to either an increase in dose or the addition of other psychotropic medications rather than recognizing the root cause - tolerance to the as needed benzodiazepine doses.  

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Informed consent for how severe withdrawal can be should be discussed with the patient who is deprescribing.

Patients need to be informed of how severe the withdrawal process can be.  Patients need to be able to prepare for the most difficult scenario.  Lack of support emotionally, physically and financially may become a reality.  This preparation is critical, and support needs to be in place in the event it is required.  Therefore, it is imperative that health care providers are thoroughly educated about the realities of benzodiazepine withdrawal so they are able to properly educate their patients and be in a position to provide support. 

Huff, C. (n.d.). Informed consent for benzodiazepine prescription. Benzodiazepine Information Coalition. https://www.benzoinfo.com/wp-content/uploads/2021/06/Benzodiazepine-Informed-Consent.pdf

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Taper rates 5-10% every 2-4 weeks, max 25% proposed taper rates will be far too aggressive for many.  Many who follow even these seemingly conservative guidelines will enter into acute withdrawal while still tapering as the body hasn’t had enough time to reach homeostasis around the new dose. 

It is imperative that tapering rates are patient-led, and any guidelines recommended not be strictly adhered to by health care professionals and seen as just that…guidelines. There are many reasons a patient might need to slow down, hold a dose, or stay where they are to take a harm reduction approach.

The pace at which a patient is able to taper needs to be honored and supported. No two individuals experience withdrawal the same and social determinants play a role in a patient being able to complete a taper successfully. Patients require flexibility and zero rigidity and need to feel safe during a potentially painful and difficult process. Rushing a patient can be life-threatening. The Maudsley Deprescribing Guidelines depict a safe approach to deprescribing.  See below.

Horowitz, M., & Taylor, D. (2024). The Maudsley deprescribing guidelines: Antidepressants, benzodiazepines, gabapentinoids and Z-drugs. Wiley Blackwell.   

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Mental health professionals need to be trained in how to support patients who are deprescribing. More education for mental health professionals, and any other health care providers who prescribe, is required.  At this time, online communities have been the only source of accurate information, support and resources for safe deprescribing.  The information is out there - it needs to be utilized within the health care community.

Health care providers need to become aware of accurate terminology pertaining to withdrawal.  At this time, vocabulary from the addiction community is being used which is not an accurate depiction of what is occurring. Patients who are physiologically dependent want off the drugs, they do not want more. They are not experiencing euphoria or doctor shopping, they just want to taper in a safe manner at their own pace.  Awareness is required of the three terms below.

Interdose Withdrawal - when a patient experiences withdrawal symptoms or rebound symptoms in between prescribed doses. This can happen when the person’s body has built tolerance to the drug.

Kindling- a term borrowed from alcohol withdrawal which seems to be the case for benzo withdrawal as well. Multiple withdrawal attempts can cause each successive withdrawal attempt to be more severe than the last. 

Tolerance- a person’s physiology adapts to the presence of the drug and more is needed to attain similar effect earlier in drug treatment. This is not to be confused with addiction where there is craving, euphoria and increased use despite negative consequences. 

In order for there to be effective communication between health care providers and their patients, the language barrier and difference between addiction, dependence and withdrawal needs to be clarified and addressed.  The addiction narrative must be shed for patients experiencing physiological dependence and must be treated with the respect they deserve from an injury they were not given consent for.   

O’Brien CP, Volkow N, Li T-K.. What’s in a word? Addiction versus dependence in DSM-V. AJP. 2006;163(5):764–765. 

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Rapid discontinuation leads to further polypharmacy and kindling. Clinicians should avoid this at all costs.

Too many patients have ended up being given multiple medications as a result of being tapered too rapidly.  There are no medications that can mask withdrawal.  They can only complicate withdrawal for the patient. Rapid tapering of benzodiazepines can also cause Akathisia which has claimed many lives in our community. These new clinical practice guidelines have the ability to save lives.  Please ensure we, the patients, have our voices of experience heard and take heed of all we share in order to save lives.

 

Edited July 18 by [Li...]
Update

[[Re...]]

I also received some random ideas, hope these lines may be inspiring. 

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The draft does has no mention protracted withdrawal syndrome that might occur as a result of incorrect, over rapid cessation in 10-15 % of patients who were prescribed the medication long-term. Not acknowledging protracted withdrawal syndrome will result in misdiagnoses and mismanagement of this condition, unnecessary doctor and hospital visits not to mention possible long-term disability.

Furthermore, even the current prescription drug label for Xanax / alprazolam tablets mentions the risk of protracted withdrawal syndrome, adressing that possible withdrawal symptoms might indeed last longer than 12 months.

Horowitz, M. and Taylor, D. (2024) The Maudsley deprescribing guidelines: Antidepressants, benzodiazepines, gabapentinoids and Z-drugs. Hoboken, NJ: Wiley Blackwell., , p. 319, „Protracted withdrawal syndrome”

Daily Med Xanax / alprazolam tablets - Human prescription drug information. Available at: https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=388e249d-b9b6-44c3-9f8f-880eced0239f

Page 5, Line 27. 

There are multiple barriers of correctly depescribing the elderly that are not detailed in this draft, one of the most important being the lack of correct skills of their medical providers (due to their "lack of practical training on how to deprescribe BZRAs"). Seniors often take benzodiazepines for many years or even decades, leading to deep physical dependence. Current medical settings or facilities for the elderly simply do not have the personnel with even basic understanding of correct cessation of benzodiazepines and possible manifestations of a benzodiazepine withdrawal.  There should be much more effort taken into informing medical providers about correct tapering and withdrawal methods before even considering such a broad recommendation to taper the elderly (as stated in this draft).   

Evrard, P. et al. (2023) ‘Barriers and enablers towards benzodiazepine-receptor agonists deprescribing in nursing homes: A qualitative study of stakeholder groups’, Exploratory Research in Clinical and Social Pharmacy, 9, p. 100258. doi:10.1016/j.rcsop.2023.100258.

Horowitz, M. and Taylor, D. (2024) The Maudsley deprescribing guidelines: Antidepressants, benzodiazepines, gabapentinoids and Z-drugs. Hoboken, NJ: Wiley Blackwell., p. 303-307, „Discussing depescribing benzodiazepines and Z-drugs” 

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While other groups (patients with alcohol- or opiate dependency or behavioural issues, etc.) may benefit from this form of medically assisted cessation of the substance in question, this is not the case with benzodiazepines. An over-rapid or abrupt cessation might led to a severe withdrawal syndrome lasting for years, as these in-patient facilities offer regimens that are a few weeks long at most. Clearly, inpatient „detox” centers and recovery facililties are simply not suitable for benzodiazepine discontinuation.

Benzodiazepine Information Coalition Detox, Cold Turkey, Abrupt Cessation. Available at: https://www.benzoinfo.com/benzodiazepine-detox-cold-turkey-abrupt-cessation/

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The commended taper rate in this draft may result in severe, intolerable withdrawal symptoms and protracted withdrawal syndrome. The recommended lenght of a taper for patients who take benzodiazepines for extended periods can be as long as 18 months, or longer, requiring a far more gradual reduction than mentioned in this draft, and should be further adjusted to the appearance of withdrawal symptoms in close cooperation with the patients. There is also no mention of the need to lower the reductions as the taper progresses. The draft also falls short when it comes to effective tapering methods and strategies.

Horowitz, M. and Taylor, D. (2024) The Maudsley deprescribing guidelines: Antidepressants, benzodiazepines, gabapentinoids and Z-drugs. Hoboken, NJ: Wiley Blackwell., p. 329-344, „Tapering benzodiazepines and Z-drugs gradually”

 

[[Li...]]

 

Thank you so much for sharing these insightful comments, @[Re...]! (Tip of the hat to the member who shared them with you.)

As you know, I am greatly concerned about the current recommendation that “Clinicians should taper BZD in most older adults unless there are compelling reasons for continuation.” (Page 12, Line 24).  One of the major reasons for my concern is that most clinicians have no idea how to properly risk stratify older adults or how to design and implement individualized, response-guided tapers for them.  I am delighted the author of these comments recognize this and called attention to it in their comments.

Older adults should not be forced off their benzodiazepine simply because they are older.  Instead they should be fully informed about the following so they can make an informed decision about whether or not they wish to taper:

(1) risk factors for problematic tapers (e.g. long-term use, previous unsuccessful tapers, history of starting/stopping benzodiazepines or other psychiatric medications, poor health) 

(2) risks of tapering (e.g. debilitating symptoms during tapering; protracted symptoms after cessation)

(3) the resources and support systems they should have in place before they begin a taper

 

[[Li...]]

Two more examples of comments below.

To submit comments go to:

 

https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

 

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The risk of protracted harm from tapering (especially forced or too rapid tapers) needs to be identified and discussed in this guideline.  Also, patients (especially older adults) need to be fully informed about the risk of protracted harm.

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Older adults should not be tapered just because they are older.  Instead,  clinicians should carefully evaluate whether the benefits of tapering outweigh the risks on a case by case basis. 

Clinicians should also stratify older adults according to what is known about the risk of withdrawal.  Older adults with one or more risk factors should be assigned to a high-risk category and start their taper with a 5% or less reduction.  Risk factors include:

• Evidence of physical dependence (withdrawal symptoms in between doses or after missed/skipped doses)
• Evidence of tolerance (history of dose increases to achieve desired therapeutic effect)
• Past history of severe withdrawal symptoms on abrupt discontinuation, skipping doses, or dose reduction
• History of repeated cycles of benzodiazepine (or other psychiatric medication use) and cessation
• Frailty

Citation:
The Maudsley Deprescribing Guidelines (Horowitz & Taylor, 2024), pages 350-352

[[Li...]]

LAST CALL!   PLEASE ACT NOW!!

Tomorrow, Friday July 19 is the deadline to submit comments on the draft tapering guideline. The draft has multiple issues so it’s important for members of the benzodiazepine-harmed community to raise the alarm about them.

Take action today:

1. Watch the video below to learn why it’s important for you to participate as well as how to prepare and submit comments.
2. If you need a disability-friendly version of the draft guideline as well as additional time to complete your comments, send an email TODAY to Taleen at tsafarian@asam.org

Quick summary:

• You do not have to live in the United States to comment.
• You can use a fake name and dummy email address.
• You must complete a disclosure form.  (Be sure to use the same name or fake name you used to submit comments.) 
• Write and save your comments in a text or word processing document before you submit them online. (If you have technical issues* you’ll have a backup of your work.)
• Here are ideas for comments you can copy or modify:
  https://www.benzoinfo.com/2024/07/01/asam-potential-comments/  and https://benzoreform.org/asam-guidelines-public-comment/
• Go here to comment:
  https://www.asam.org/quality-care/clinical-guidelines/benzodiazepine-tapering

* If you get the message “You have already taken this survey” email Taleen at tsafarian@asam.org . She will send you a link to continue commenting. 

 

[[Li...]]

Do you want to …

• Prevent patient harm from forced tapers, too rapid tapers, or inpatient tapers?
• Ensure that clinicians know how to taper patients safely by using The Maudsley Deprescribing Guidelines?

Submit your comments TODAY (Friday, July 19) about the proposed ASAM tapering guideline.  See previous post for instructions.

Sending a shout out to @[Re...], @[Ka...], @[Fa...], @[Ma...], and @[kn...] for your support of this mission critical effort!

[[Fa...]]

I'm sure I'm not alone, @[Li...], in extending a heartfelt 'thank you' for all of the time you have given to ensure that this initiative moves forward as successfully as possible.  So, please accept my gratitude.

As I had expressed before, motivating and inspiring action within a community that is injured and suffering with severe symptoms is not an easy task.  Motivating healthy individuals is difficult.  Motivating those who are unwell takes commitment coupled with compassion and understanding which you have shown us.

I have read comments posted on the BIC site from injured patients, and it is very clear that the opportunity extended to us to submit comments was not an uncomplicated one for the target community and, in fact, felt very overwhelming.  More time was needed.  I know that had I been only several months back within my timeline, I would not have been able to put together a submission.  This along with the fact that the very professionals we needed to submit recommendations were not granted access to public submissions...this I found very disturbing and difficult to not see as being given an important task with life-saving implications with our dominant hand tied behind our back.

I do hope we may see an extension offered.  However, if that does not happen, I will just have faith that what has been accomplished will be enough to see the changes made that are required.

Warmly,

F 

 

 

 

[[Li...]]

Thank you for starting my Saturday off on a high note, @[Fa...]!

Your kind words and support are much appreciated. 

I agree with all of the points you’ve made plus share your hope that our efforts will make a difference.