Thank you Hope! In response to those questions, our son has in the past rarely been medication-compliant, although he has been compliant with ECT, and more recently in hospital and group residential settings with no other option for housing, he has been compliant with oral meds and injectable AP (Invega Sustenna). Previously, we were concerned about his compliance taking a daily oral med. Plus, Invega is the only_emphasized text_ AP he has ever had for any length of time. I read that Clozapine is normally not tried until multiple other AP drugs have not worked. We think our son will comply with an additional oral med now, at least while his medication is being administered and monitored. And we really don’t of anything else to help him at this point. But we can’t start it unless his CBC (WBC, ANC or neurophils…I’m still trying to understand this) is high enough. And I would hate to start it and then not be able to continue if it dropped too low again. If we do start it, the doctor will start at 25 mg. Clozapine 2x daily for several weeks before gradually continuing to increase dose and titrate him off of Invega Sustenna (lower dose then switch to daily pills).
She says she never understood a lot about the CBC’s either she did add
“Ok. The only other thought I have is - Does she understand that it takes (on average) 6 months to reach therapeutic levels in the blood serum? That can be difficult to wait for. Many give up after a few months.”
Yes, I do…thanks so much for this input! I found out ANC is the neurophil count and that, in relation to the total (CBC) is what is relevant, I think. I have a message seeking clarification in to the facility director (and doctor). Wikipedia: Absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes (also known as polymorphonuclear cells, PMN’s, polys, granulocytes, segmented neutrophils or segs) present in the blood. Neutrophils are a type of white blood cell that fights against infection .
Just so you know if the white blood count gets low they can boost it with lithium. I learned that when my grandson blood count went lower. He is now off lithium and his blood count remains stable. I had to fight like heck to get him on Clozapine and if a doctor doesn’t want to try it its because they are not familiar with it and it scares them. It’s is the gold standard for schizophrenia but they make you do trials on other medications first. My grandson got it because nothing else works and he was hospitalized so they could bring his dose up quicker. Save his life. Been 3 years he is working fulltime. You would never know he was once so ill. This week we are starting to wean him off the clozapine so wish us luck
Thanks for the info on lithium boosting white blood count . Best of luck -always- why are they weaning him off Clozapine?
He is wanting to go off. Doing it very slowly
My daughter has been on so many drugs I feel that I am ready to give up.Her doctor wants to put her on Clazapine now but her boyfriend wants to go to a hospital that has top notch doctors but her doctor is going to fight us.But after hearing the great results about this drug I now don’t feel like being an advocate for her .But what ever her boyfriend says usually goes.He is pretty new to schizoaffective disorder so I might just step back.I really don’t want to have to tell him I think the doctors is right this time.I don’t want to cause friction with him.But I dislike it when he tells her things like you really aren’t the girl that you used to be.
I would not like the boyfriend saying things like that at all - we know there will be a new normal that everyone needs to embrace. Not that long ago one of our longtime posters on this forum who updates us from time to time on his progress, said how hard it was for him that people expected him to be the same as “before”.
In my opinion, you can’t give up (inside yourself) until she has given clozapine a chance. I do understand that the boyfriend seems to have the power of decision making at this moment and there is no need to add friction. If stepping back feels right at this time, its probably a good call. Her doctor may win this one for you.
My son is definitely improving on the Clozapine. He is now tutoring high school students in math and physics and has another part time job.
How wonderful! Encouraging, too!
My grandson improved so much on Clozapine he is leading a fairly normal life. He works fulltime and is making friends its great. He hasn’t been hospitalized in over 3 years.
They can azlways give lithium to increase WBCs just so you know. Clozapine was the only med that helped my grandson and his wbcs dropped in the begining. Thankful doc gave him lithium to increase them his count is fine now and he no longer takes lithium
We continue to see improvement with Clozapine as our son was affected in a way called Formal Thought Disorder, likely as a result of multiple and recent pro-longed catatonic incidents, possibly from too much ECT. His speech clarity is almost back to normal and his verbalized thoughts much more often are correctly stated and make complete sense. He still has some confusion, but much less. His room is no longer in disarray at the last two visits. He was proud of making his bed. He has asked about spending money, so started his “allowance” up again. (He has to complete morning hygiene, eat breakfast, and show up for a.m. meds by a certain time to get allowance.) He is more distressed in his current environment in a personal care home because he wants to DO more. That is improvement! So we are visiting and taking him “out” more. This makes him and us happy. We and doctor are concerned that he has lost quite a bit of weight…he was small-framed to begin with. I think meds have affected his taste buds. His ability to read is still hugely problematic (we think it is brain and not actual vision) and we hope med will help that soon. He can spell perfectly. He is still so much the son that we know! But he still can’t attribute his improvements to the medication.
@hope4us Great to hear your son is doing so much better! Have you tried to see if he can read on a kindle (paper white). You can make the type any size. Maybe if he just reads a few words at a time. I am a kindle reader as I have a stigmatism and it is waaayyyyy easier to read on the kindle.
My son, as well, does not see his change is the result of taking meds. I explained to him about anosagnosia but he wouldn’t buy it. He’ll be on meds for a year and then he can get off. The psych doc said sometimes people make contracts with people with sz while they are well. A contract that if I see some of the paranoia coming back that he would go back on the meds. We’ll do that but I am sure the lack of in-sight will win. For now, he is stable.
My son can be contradictory about what he thinks about taking meds. Sometimes he complains and says he doesn’t need them. Other times he has mentioned that he doesn’t feel good if he doesn’t take them. And he takes them EVERY DAY, something that convinces me that he must know they are doing some good.
Our son’s vision problems seem to be inconsistent in severity but mostly not good, even when reading large signs along the side of the road. He can read some things, or parts of things, but not the entire thing. Occasionally he makes up part of the content (not sure if this is unintentional or avoidance of reality?) to say something that might be correct but is actually not there.
He has a neurological appointment next week.
Don’t give up on believing that your son can gain insight! You’ve got a year, so I encourage you to use LEAP and consider the possibility of talk therapy or using CBT. Over time, people may very well gain insight! I have observed that you are wise AND determined!
When my mom had Alzheimer’s I used to have her complete sentences for me. Like simple nursery rhymes. I think it helped a bit. At least she thought she was clever when she remembered. Hickory, dickory, _____. I wonder if your son would respond to those - could use song lyrics as well. Hopefully the neurological appointment will show something.
I have a co-worker who was in and accident. She had major issues with one side of her body. It took them 2 or 3 years and they finally found some nerve in her armpit that was damaged, or something like that, and now she is fine. Sometimes it takes time to figure out what needs adjusting so hopefully they will find something that they can adjust.
Thank you for your vote of confidence. I’ve talked to my son about anosognosia and explained that it’s part of his condition. I’m also compiling a list of alternative things he can do, like sarcosine, profrontal, CBT and vitamin D. He did make his Chinese herbs yesterday that are specifically for him. So that is a start and he seems to be staying the course with his shot and doctor.
This is a great idea and I tried it yesterday! He remembers Hickory, dickory, dock" so that is a good thing! We’re singing songs, too. He actually remembers a lot and continues to be able to function more normally on the clozapine. But still a long ways to go. Also, he has had a significant weight loss, but I figured out that his taste buds have changed. Some of the things he used to like and that you would expect a young person to like (some fast food) no longer taste good to him, and he agrees with this idea. We don’t know the cause but it certainly could be medication. We are figuring out enough things that he DOES like that we can help him get enough calories and good nutrition. Hopefully he won’t flip the other direction in gaining weight, unless that would be an indicator that the medication is working. He is at 400 mg. now. Still looking for ways to keep him busy…things that he enjoys. Hopefully colder weather will not deter us too much from our walks in the park. He has even run a few short sprints and we stop and use the equipment (such as a leg press) on the side of the trails. He ordered his own food when I treated him to a mid-afternoon fast food stop and he went back to place an additional order at the end of our meal for cookies (to share with others at his residential home) with his own cash. I am hopeful for continued improvement! I will take him to neurology consult next week.
hope4us. That is wonderful news and I am so happy to ready your update!!!
How did they wean your son from invega sustenna and start clozapine. How many days did it take for you to see the positive results of clozapine.
My son has been on invega sustenna inj for more than 2.5 years now. Before that for more than 1 year they tried risperdal consta. He was not showing improvement so they switched him to sustenna. Not much improvement for 8 months, so they added depakote. Some improvement but not much. Added zyprexa and then added haldol. That is when he showed some improvement but still not free from hallucinations.
I guess the injection consta or sustenna did not help him from the very beginning. But doctors kept adding other meds but never stopped invega. Where as my guess is that my son benefitted from depakote and zyprexa and haldol and no benefit from sustenna shot. But doctors do not see this.
I want to advocate clozapine for my son. But need to understand how do they switch him from sustenna to clozapine. How many months will it take. Will he go to the hospital for this? Please share. Thank you so so much!