Family and Caregiver Schizophrenia Discussion Forum

I'm so nervous that Clozapine won't work


#1

My son has been in the hospital for one week. He is fairly newly diagnosed. Zyprexa at a high does worked for about six weeks and then quit working. Then he tried Saphris and that did nothing. He even got a new symptoms of seeing “movies” in his head of bothersome things ex. him being shot with a bow and arrow, his friend being buried in a cemetary, a voice telling him he was being taken to Mars and then him seeing himself on Mars in this movie in his head.

The hospital decided he should try Clozapine. It has only been about four to five days but I don’t see any improvement. He is hearing voices telling him he shouldn’t eat because he is overweight. He is not overweight though. Today he said he was seeing a snow boarder in his mind, he responded out loud to one of the good voices, and on and on…

I know he is getting 200 mg of the Clozapine daily. Should it be working better or is it too early?

Anyone been through this where it didn’t work and then what did the doctor’s try?? I always heard this was kind of the last resort med


#2

My son is on clozapine also and has been for about 10 years now. He was diagnosed at 21 with disorganized schizophrenia and he is 34 now. It works very slowly, slower than the others and it shows continual gradual improvements over an extended long period of time. It is referred to as a last resort medicine but in many cases it works for hard to treat patients like my son. It took my son about six months on the medicine to see a really significant change. For him it was the voices leaving. The first few months was his body becoming accustomed to the medicine. It can make the patient very sleepy and hungry and lethargic for a long while but after time (maybe 6 months or so) those issues can greatly improve or at least they did for my son. His only remaining side effect today is excessive drooling at night but he takes 2 mg of benztropine and that noticeably reduces that issue for him without creating new ones. It took over a year and some slight dosage adjustments before his doctor and I could determine that the majority of his persistent delusions and all of his voices were gone. for a few years he took 300 mg per day (150 twice a day) and then he did so well in the past couple of years that he takes 250 mg per day now and maintains his level of wellness. Negative symptoms persist like lack of motivation, preference for isolation (except for my company) and only occasional confusion, forgetfulness and disorganization but overall he can communicate well when he chooses to, care for himself adequately and interact with me (and others when necessary) in a healthy and satisfactory way. (He lives with me) He still can’t handle the stress of a job or other outside group activities like that but he is content with activities I plan on a weekly basis and he is a million times better than he was when he was at the height of his illness. My advice based on my own experience is to gather all of your patience and give this medicine time to work and if no changes occur within a few months address the possibility of a slight increase in dosage as sometimes a higher dosage is needed in the beginning of the treatment process. He has to have good blood test results to stay on the medicine to make sure his white blood cell count stays healthy. So continuation of the medicine is always contingent on that but my sons tests have been normal for the entire time he has been on it. I count him as very fortunate, some don’t do as well. Overall clozapine has a good record for being beneficial for treatment resistant patients. I wish you and your son the best outcome possible. I am including a link to a NAMI information page on clozapine that you might find informative. https://www.nami.org/Learn-More/Treatment/Mental-Health-Medications/Clozapine-(Clozaril-FazaClo)


#3

It is too early. I am surprised they are giving him Clozapine if he has only been recently diagnosed. It is typically given only when several other meds have not worked. It can take weeks for ANY anti-psychotic to work. Our son has been on Clozapine for @ 7 weeks. (He has not really been on more than one AP for any length of time but his symptoms are different than most people with SZ). His dose is now at 350 mg. having increased gradually. His doctor told me it could take 6 months to show results. Elsewhere in this Forum, someone talks about it taking a year before results were seen on Clozapine. And yes, like @Catherine mentions, I am told that persons who respond well on this drug often do amazingly well. I was told about a person who had been in the hospital for THREE YEARS and is now on this med and living independently, with some frequent help from a family member.


#4

My son is on 500 mg of Clozapine and he has been on it for about a year. He continues to improve slowly but continuously. I recommend going on FB and searching for page called “Clozapine”. Two doctors who have a son with sz have put up the site and have written a book about Clozapine. I highly recommend it. I have used some of their information to get my son’s current psychiatrist to try a few things. No other drug worked for our son so Clozapine is good for him.


#5

Previously to his psychotic break he was diagnosed with a non specific episodic mood disorder for many years in addition to being high functioning on the spectrum. When he was in what we think the prodromal phase of schizophrenia, he was already on the max dose of Abilify. Then he ended up on the full dose of Invega which did nothing. His first psychotic break occurred while on a full dose of Geodon. His first hospital tried Latuda which didn’t work. Then the latest was the failure of zyprexa and saphris. So, I think that is why they are trying Clozapine. Thanks for your feedback it is helpful to compare notes.


#6

thanks for all the information - - I’m going to see about buying the book now.


#7

Yes, his having been on so many different AP meds explains why the doctor switched him to Clozapine. Just give it time. I hope it works well for him!


#8

My son is on 250 mg daily, and has been on Clozapine for almost 3 years with one dose adjustment (from 200). He has had only 1 hospitalization in the 3 years.

I am personally terrified to feel too hopeful, but I still see improvement now. He has continued to have symptoms of delusions and internal stimuli (voices), but he seems to be slooooooowly making some progress in terms of quality of life.


#9

Vallpen, How old is your son? How old was he when he got diagnosed? Did Clozapine make him tired at first?


#10

We are seeing some small signs of improvement in our son’s Formal Thought Disorder (the illness diagnosed as SZ had progressed after numerous catatonic incidents into these manifestations of illness called FTD) after being on Clozapine @ 6 or 7 weeks. His slurred speech is much better and his sentence word content makes sense more of the time than it had. He still mixes up words and some things he says don’t make sense at all. He phoned me today for the first time since May. However, in showing improvement, he has lately been begging to come home, or today he was just begging for me to come see him. He is still very sick…I could give you lots of examples. The personal care home where he has been for 3 months is a good and caring place for him, but I think he misses his former life and friends. He cannot go back to that life because it doesn’t exist. But we remain hopeful that Clozapine will bring continued improvement and we can figure out a “next step” for his care, treatment, and living arrangements.


#11

This is really good news hope4us! I know that Clozapine is slow to show results, just seeing some small signs lets you know it is actually working. Thanks for the good news.


#12

My son is now almost 29. He was diagnosed at 19, and was tried on several other APs prior to clozapine. I think it did make him tired, tho sometimes it is hard to sort out what is because of negative symptoms.


#13

My grandson had some of the sane horrible hallucination. Got him on clozapine 450mg he now works fulltime is making friends he is doung so good we are lowering his dosage. He has now been on 400mg with 75mg lamictal for a minth now. Getting ready to decrease anither 50 mg next week


#14

@lindag Sometimes I wonder if the drugs just do a reset on the brain. I’ve heard of some people not having to stay on these drugs forever. Glad to hear the dosage is coming down and your grandson is doing better!


#15

Yes but it takes time. You could see the difference in him in 5 days and i could see gradual changes over the months. You really would never know he is ill now.


#16

My grandson continued to improve over months and years. Been 3 years now and you would never know he was ever so sick. He is working fulltime in a grocery store, making friends, socializing. We are now working on lowering his dose, he was on 450mg now on 400mg and foung great, next week we decrease another 50mg. He had some sude effects like huge weight gain but he has lost 75 lbs but he has a problem wit saliva.


#17

@lindag So good to hear! I can’t recall, does your son have insight? How did you get him to take the meds?


#18

Update. I saw son again today and the small improvements we had been seeing in the past week had mostly disappeared. Maybe there will be ups and downs as the medication is hopefully continuing to gain effectiveness? Also, the doctor yesterday is cutting back on already low dose of Clonazepam (anti-anxiety) so maybe that will help with blurred vision, slurred speech, and drooling.


#19

Yes he does. Well he was never against trying meds. Just none of them worked but Clozapine, he was treatment resistant. But he was hospitalized and they could bring his dose of clozapine up quicker and within 5 days the voices stopped he says they are 90 percent gone. The other 10 percent he can handle


#20

Your situation is familiar to me. My son was switched to Clozapine late last winter. We were all but guaranteed dramatic improvement. Never happened. However, he has achieved greater insight into his schizophrenia. He is now 34 and for the first time doesn’t deny his condition. He is more comfortable to just go with the flow. He believes he is being shot with all kinds of projectiles from bullets to piercing frequencies but it doesn’t bother him much and he is open about telling me about it. He sees creatures of all sorts, different sizes, every make and model you can imagine. Again he has become comfortable with them. So, in a word he is more relaxed about all of this. The worst of the side effects of Clozapine have not happened to him, but others have worsened - tremors, coordination, memory; he will sleep away almost entire days.

The doctors use other meds to help with some of the side effects, but are very resistant to stopping the Clozapine. But there is always hope. New drugs are forever being developed. I wish you well. Remember to look after yourself.

Bob