They do it slowly outside the hospital. In the hospital they were bringing him up 50 mg a day. He came home after 15 days and we had our grandson back. Worked miracles for him. Give it time he is still on a low dose. We continue to see improvements with him. Good luck
My son has been increased to 200 mg day of clozapine with 0.5 mg of risperdone which will be eliminated altogether in a few days. He is still spending so much time pacing and living in a fantasy world. He is very calm, yet is always searching for time travel solutions or a mathematical solution to something. I know the doc is trying to go slow but it is painstaking for me to see him in entrenched in this other world.
Yes, it is hard. But stay encouraged. For starters, you know where your son is and you know he is relatively safe. Secondly, he has been started on a medication that has proven wonders for many persons who are on it. It took at least 6 weeks before we started seeing gradual improvement. The positive change after 3 months was incredible, and we are still seeing improvement. Our son applied to volunteer at a local hospital recently and we are going to try apartment living with another young man!
If you look back to see what you have come through to get to this point (No oneâs pain is more or less than my own, but our story includes not knowing where our son was exactly for 3 months, half of an entire year in multiple hospitals, plus other hospitalizations in other years, too, refused admission to a hospital where he needed treatment, then, among other things, 3 months of Formal Thought Disorder (look it up and you will see how dramatic it can be), wandering into another personâs home, and being reported to the officials who manage personal care homes as being too sick to stay there. This does not even take into account our financial and time resources that have been expended.) If you can believe that you are closer to a better life for your son, and for you, please stay encouraged.
Thank youâŚI needed to hear words of encouragement. Sometimes I feel so low.
2 Likes
My son has been at 200mg for two weeks now. May be doctor will increase another 50mg after 2 weeks. She has been going very slow because he has been on so many other high dosages medicines. She already stopped zyprexa. She plans to discontinue a couple more but slowly. But my son is feeling calmer. He seems to be less paranoid. I took him for a haircut and beard cut yesterday and he was happy to see himself clean. He agreed to join us for dinner after 2 days. He planned that he will do his laundry on monday and will do shower on tuesday and will join the family for dinner that night. We will see. He lives in a group home. Keeping my fingers crossed!
These are small things for regular people but for us moms these are huge improvements. May God bless our loved ones!!
My son has been on Clozapine for 7 years now. your Dr is taking the best course of actionâŚtitrating the dosage up slowly. Coupled with the required blood drawsâŚslow and steady is the way to go. My son responded well to clozapine. He is currently at 400mg. Stay the course and good luck.
2 Likes
Thanks djc327. Yes I do agree slow and steady is the way to go. My son is still on 200mg clozapine. But since starting clozapine doctor took off his 20mg zyprexa and also took off his 10mg haldol. It has been a couple of weeks. My son is still stable even after taking off these two pretty potent drugs. He is still not too much better but he is somewhat calmer. Next plans is to lower invega sustenna injection dosage and titrate up on clozapine⌠Keeping my fingers crossed.
1 Like
I went to visit my son yesterday and he asked me himself if he could visit home and I was delighted as he had always refused to come home for last several months. He said he was hungry and wanted to eat his favorite dinner. He helped in cutting the veggies etc. We cooked together and the the whole family ate together. All this has given me so much happiness. Then I dropped him back to his group home. He is on 200mg clozapine and 247mg invega monthly shot. Also taking depakote. small welbutrin and .5mg clonazepam/cogentin. Keeping my fingers crossed and looking forward.
2 Likes
Thank you Catherine for your positivity , grounded advice and post. My son has been on Clozapine for over a year and a half and has been able to return to part time work and taking a class at our community college. He struggle with cognitive difficulties and has done cognitive remediation with our EPI (early psychosis intervention ) program at behavioral heath center where is physician practices. Is your son on anything besides the Clozaril ? My son is on 650mg and we are trying to decrease as not much improvement as we increased from dose of 500mg but we were hoping to see improvement in ability to concentrate for school work. A recent second opinion suggested adding fluvoxamine as we lowered the Clozaril as this med adjusts the metabolism of the Clozaril but we have not done thatâŚchange is slow and we watch so carefully for return of paranoia behaviors.
2 Likes
My son takes 1000 mg of Depakote X2 a day in a addition to the 125 mg clozapine X2 a day and 2 mg of Benztropine. The depakote is for an atypical seizure disorder he developed a few years ago which is under control now. The benztropine is to reduce the drooling affect that the clozapine causes at night when he is asleep. He was originally on a higher dose of clozapine 150 mg X2 a day but over several years found that a lesser dose worked as well with the doctorâs guidance. He was also on Zoloft for a few years in the beginning for depression but stopped it several years ago when the doctor, my son and I thought he was not depressed anymore.
1 Like
My grandson is on 350mg Clozapine and 75mg Lamictal. Its been 4 years now and he seems to get better all the time. We even decreased his Clozapine from 450mg to 350mg. Good luck
1 Like
maria1,
Thank you for asking whether clozapine might stop your sonâs random thoughts. My son used to express those random thoughts so-o-o frequently. If he was alone with me, I could usually roll with it and guide him back to the original topic. But whenever other people were present, my sonâs random, off-topic comments usually made everyone uncomfortable. I remember being miserable then.
My son has been on clozapine (400mg) for several years now. I"m not sure how long it took before those awkward, random comments subsided, but they did stop. I sort of forgot about them until I read your post. My son still raises some of the same topics that have always sounded bizarre to me, but nowadays thereâs always a fairly obvious, logical connection between the original topic of conversation and the one he introduces. Itâs not random or worrisome. Iâm very grateful for that improvement. I hope the same thing happens with your son, but he may need a higher dosage of clozapine before you will see that kind of improvement. Hang in there!
1 Like
yesâŚmy son is taking lithium as well. (300 mg, 2X day) He does get a regular blood draw for the clozapine each week, but i suppose a more extensive blood check should be requested. He had one almost a year ago at his regular doctor physical. Itâs probably about due for another physical so i will be sure to ask. Thank you.
1 Like
Thank you okra, my son has been on clozapine for about 3 months now, he is currently on 250 mg day. Im hoping the pacing and those random thoughts and muttering to himself will settle down. Some days i am better than others in dealing with everything. I dont know if things changed all at once suddenly in your situation but I am guarded when i say that things are a tiny better lately. Yes, he paces and says odds stuff, mutters to himself but he has also recently asked to take some golf lessons. I dont play golf but i was excited he wanted to do anything. I am hoping this is the start of seeing some real progress.
1 Like
maria1,
Iâm glad your son asked for golf lessons! The fact that he wants to go somewhere and do something sounds like a step forward to me.
My son took Abilify for several years, but his symptoms grew worse and worse. He became paranoid and suspicious, especially of me. He thought I was plotting against him. Anything I said or asked, no matter how benign (such as âAre you hungry?â), he thought there was a hidden, sinister motive. I couldnât say or do anything without being suspected of trying to manipulate him. I felt like I was walking on eggshells all the time.
His p-doc added Navane (an older antipsychotic).Within 3 weeks I began seeing improvement in my sonâs paranoia. That gave me hope. But Navane caused noticeable muscle stiffness and other side effects. So the p-doc added clozapine and began reducing Abilify and Navane â eventually weaning off of them completely.
A couple of weeks after adding clozapine, my son tried to tell me a little joke. It was the friendliest gesture I had seen from him in years. I remained guarded for months because I was afraid I might say something that would rekindle my sonâs paranoia. Thank goodness improvment continued. He gradually relaxed and so did I. He still believes all sorts of conspiracy theories, but does not seem to think anyone is conspiring against him. I am no longer walking on eggshells. What a relief!
Blurting out random thoughts: that continued to happen after the paranoia subsided. But it gradually went away. My son still moves off-topic quickly, but itâs no longer random or disconcerting. Thereâs a logical connection between topics. Seems like his brain is just functioning better now.
I hope you continue to see progress with your son.
1 Like
Our son continues to do well on Clozapine after 7 months. Iâd like to share that there is a book "MEANINGFUL RECOVERY from Schizophrenia and Serious Mental Illness with Clozapine: Hope & Help " that includes a chapter written by the doctor who co-authored this book with the parents of a young man with SZ and with the young man himself. The doctor has treated a lot of patients over the years with Clozapine and he records some data regarding that, as well as some significant detail about adjunct medications and supplements he recommends that may be helpful in various situations. He explains those in the book. Our son does not take any additional meds but we want to be familiar with options in case they are ever needed.
1 Like
My son is on 200mg clozapin and the last increase was six weeks back from 150mg to 200mg. He is better but still talks about people calling him from other country. I am looking forward to another increment to his dose. He is titrating it outpatient. He sees his doctor every week. Is this how slow it is increased?
He is also taking highest dosage of invega shot and 1000mg of depakote. Haldol and zyprexa have been taken off already.
Sending my prayers for everybodyâs loved one!!
Be sure to report to the doctor what you are seeing. And give a nudge if necessary. My son was stopped at 250, it was raised to 300.
He still has significant delusions, and some paranoia, but it doesnât rule his life like it used to. He is able to play computer games, which he couldnât for a long time, and spend some time in a social environment.
Thank you. I REALLY needed this today. Big hugs.
1 Like
Im new here. I dont know if this is the place for me to post or not but its under clozapine so here goes. My son has tried about 8 antipsychotics and none have worked. Just got through with 12 ECT. It didnt work either. Dr has now started him on clozapine, 300 mg. He lays in the bed at least 20 hours out of the day. Talks to no one, doesnt shower or even brush his teeth. Hes also on geodon, pristiq, zanax,vistaril and trazadone. Its only been 2 weeks but his laying in the bed all the time depresses me to no end. I feel like im drowning! Is this typical for just beginning clozapine?