What I have read is that it is not safe to be off Clozapine more than 48 hours without titrating it back. However, 156 mg. is a relatively low dosage. The home was hopefully doing that under the consultation with a physician qualified in the administration of Clozapine. You can report your son’s symptoms that concern you to his doctor, or to the case worker if you don’t have direct access to the doctor.
Our doctor, who has worked with Clozapine since the first clinical trials, put our son on Clozapine and said his target dose was 500 mg. He was on staff at Emory and was front and centre working on all the clinical trials initially implemented before approval of the drug. I know of no one who is more familiar and well prepared in knowing how to use this drug. It has been a miracle for our son. Sufficient dose,med compliance and patience to let it work have led us to believe that it the only sure thing. My son no longer has any delusions, paranoia, psychosis. He works 40 hours/week at Office Depot, is med compliant and otherwise substance free, He lives with a roommate, drives, etc. He,too,was in a top 25 university and had ambitions for so much more. He was in engineering with exceptional skill in math and physics and interest an astronomy (astrophysics, astronautical engineering), He’s doing so well but still needs a case manager to check on him 4 times a week and a therapist he meets every 2 weeks, etc. all of which give him enough support to thrive. However, we don’t know if he will ever be able to go back to school or support himself. He’s doing well with a big support network and 100% financial support from us but we are still waiting to see how much progress he still has yet to achieve.
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Thank you for that in-depth information. I do suspect that on a higher dose my son could do better, but also don’t want to be the one who pushes it. That results in creating resentment toward me on the part of my son.
When my son was changed to Clozapine, research suggested that 600mg/day is a common target dose. I will again have the doctor request blood level check to see where my son is at compared to what is considered the therapeutic blood level.
I’m certain that “therapeutic” is a range and is different for different persons. 300 mg is on the lower end of what I read on various sites as being helpful for most persons. I like to look at actual medical trials and view their summary reports on the site PubMed
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My grandson to has had a miracle with clozapine.his dose has actually been lowered tk 350mg. He only sees a psyche doc every 3 to 4 months. Miracle drug in my book. He has also been clean going on 5 years now
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Hi, I am new to this forum. I am glad that your daughter doing well on her med. It has been over a year now, I hope your daughter still doing great. My son was 16 and diagnosed with schizophrenia last October. He refused to take med and still in his denial stage. He acts and talks normal but I know he is suffering and depressing. I am glad that your daughter is med compliance. How did your daughter go through three years of trial and error? I know my son has to go through the same route in the future.
@Bzhan Your son does not HAVE to go through the same route! Do not be resigned to that! Please look through this Forum and find about ways to learn more about Schizophrenia and the tools you can use NOW to help your loved one. My top three are (1) NAMI.org, (2) the book “I Am Not Sick; I Don’t Need Help” by Dr. Xavier Amador, and (3) the book “Surviving Schizophrenia: A Family Mnaual” by E. Fuller Torrey, M.D… As you listen and learn, keep your eye on the medication Clozapine. Many people believe that it is underused in the U.S.
Keep in mind that you will see a lot of heartbreak on this site, too. The people that have had more recovery are less likely to post on this site.
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One thing that may have worked in her favor was that she has schizoaffective disorder - a combination of bipolar and schizophrenia. I think maybe it made her more emotionally accessible.
It was extremely difficult for her to be on so many different medications and to be hospitalized so many times. What she never lost was her trust in us - particularly me. And, as I look back she was very courageous. She had a lot of support and encouragement and constant reminders that she would get better. We also told her that she needed to trust the doctors.
Four years in, she has just gotten her first job. It’s a good job where she will develop transferable skills. It’s also in a place she loves to be. So far, she’s doing very well. Our one worry is that her clozapine levels keep dropping and her psychiatrist continues to need to raise her dosage.
The social piece is hard. It seemed to drain all the energy out of my daughter. It has gotten much better over the years. I wish your son well. Give the clozapine time. You’ll see gradual improvements.
Hello slw
Thank you for this update and to everyone who has also shared the impact of clozapine on their loved one with mental illness.
Our 28 year old son started clozapine in May 2018 after trying a number of other antipsychotics since his Feb 2016 involuntary hospitalization. His diagnosis is schizoaffective disorder. He has tolerated clozapine well and made significant improvements. We are enormously grateful to his wonderful providers.
Our concern is that he continues to experience paranoid delusions. With therapy, he is able to manage them although he still believes that they are real.
I am interested to know to what extent you have found paranoia to decline under clozapine—or the ability to recognize that the delusions are not real.
Sending my best to you all!
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For the most part my grandsons delusions are still there how ever he can control them. Its been a miracle drug for him. He just got a great job. He went through a panel interview process and did well. He does seem to get better and better. He has the same diagnosis and the only med he takes now is 350 clozapine bern 5 years now
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Hello Lindag
I am glad to hear such good news about your grandson! What is his living situation? And with respect to his delusions, does he recognize that they are not real but part of his illness?
Our 28 yo son who is on daily dose of 275 mg of clozapine just lost his job. Working full-time as a web content specialist for the past three mos in a situation where there are daily production quotas seems to be too stressful and require more concentration than he has at this stage in his recovery. We would like to find employment counseling but neither the state workforce centers nor private counselors have expertise in evaluating and advising young adults with early onset psychosis.
Thank you
Spock
A therapeutic dose of Clozapine varies significantly from one person to the next, but 275 mg. is definitely below what I have seen as the typical range. What does the doctor say? A book I believe is a good one about Clozapine, with real life data and hope for recovery, is written by Dr. Leitman. You can read about it here https://www.teamdanielrunningforrecovery.org/.
Hello hope4us
I will check out that website and order the book. Many thanks!
This is such a helpful forum for support and resources
Spock
I found out recently that Clozapine can cause an increase in OCD symptoms that some persons with SZ have. However, it can be challenging to diagnose what is actually OCD (or OCS) and whether or not it is caused by the med. There are some helpful, if detailed, research articles on the NCBI Pub Med site. Google “Clozapine and OCD” if this might be applicable for you. Basically, you can try reducing the level of Clozapine, you can try reducing Clozapine and adding a 2nd AP med (only one or two are recommended in this scenario), or adding and adjunct med (I think SSRIs. Zoloft is one.) But do the research and discuss with your loved one’s doctor.
I loved to read about your grandson’s success. It gives me hope. My son has been on Clozapine for about two years. He is doing better but is not able to think clearly enough to attend school or get a job. His treatment team is working with him to reduce other drugs and he seems to be more clear headed. It is definitely a process. I feel for everyone facing this hideous disease. It changes everyone.
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You might want to read the book referenced above. There is a chapter that talks about adjunct medications in various scenarios that seemed to work in that doctor’s experience with @ 100 patients on Clozapine. MEANINGFUL RECOVERY from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Help by Dr. Laitman.
I have already read that!! It is a good book and it certainly gives me hope. I have read so many books on this illness and continue to search for the latest information.
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He takes 350mg currently but has been up as high as 550mg. His frlusions are still there and he still believes them as far as I know. Very difficult to talk with him about his disease cause if he talks about it he is sick. An outsider would probably not know how sick he is, even his own family members don’t believe he is sick cause he is doing so well. He does work fulltime and is doing great. We are very lucky butg it was a long hard fight
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That’s good to hear. My son has been on for 10 months along with other meds. He stopped smoking mj for 3 months and was doing much better although still had anxiety. He is med compliant but still smokes mj. Says it helps with side effects of meds. So far he’s not psychotic and is more sociable.
Maybe he would be even more engaged if he didn’t smoke mj. He’s been out of hospital for a year now. Our son is 36. Diagnosed at 18. Many hospitalizations since diagnosis. We are tired and basically have given up on trying to convince him to stop smoking mj. He lives in a condo we own. Can’t live together.