Moving Mountains
for Neurobiological Diseases
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Quick Start Guide
Clozapine Management for Caretakers
Clozapine has provided a lot of hope for Moas and their loved ones for many years. However, it is a medication that requires understanding layers of information, ongoing monitoring and adjustments, and partnership with your clinician for optimal results. In best case scenarios, some individuals with severe SMI have lived in a stable disease status and thriving in life for 10, 20, or 30 plus years. In worse case scenarios, clozapine can have a harsh relapse response if medication is skipped, some individuals are clozapine resistant, others have conditions in addition to SMI that create complex and sometimes negative outcomes.
Many caretakers that have a loved one with severe SMI end up trying clozapine after years of many failed attempts with other antipsychotics and the old criteria used to require this. But, new research has shown that due to clozapine's unique success in preventing suicide and aggression, it should be used first for indiviudals that exhibit suicidal thoughts, aggressive or violent behaviors. The earlier initiation begins for these individuals, the better the likelihood of success.
** Please consult your medical provider and read our medical disclaimer below. Any and all information on this website should not be taken as medical advice and is for informational purposes only.
Step 1 - Learn about clozapine basics
You can learn the basics of clozapine management from the resources provided in our directory by filtering by clozapine. Below are the "must-have" resources and links that we suggest starting with.
Step 3 - Discuss with your loved one
Depending on the status of your loved one, whether they have anosognosia or not, the approach to this conversation can look different.
Understand ongoing adjustments and lab Tests
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Step 2 - Find a provider
One of the greatest challenges can be finding a provider that will prescribe clozapine and a provider that will be open to the information about slow titration and managing side effects. Additionally, not all clinicians have experience working with patients with anosognosia (lack of insight).
Step 4 - Prepare for your appointment
If the medical provider allows you to share some information ahead of the appointment, we suggest you email or drop off a week before the scheduled appointment. Some key information that might be helpful for the clinician are current medications and history, onset history and timeline, current status, medical history, family history, goals.
Identify where you can find additional support
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Advice from other Moas
Partner with your clinician
"The relationship with your clinician is a critical piece of success. Provide resources, ask questions, but interact from a place of gratitude and humility. Focus on growing trust and friendship, so your clinician can see you as a partner in the process and you can come up with solutions together."