My daughter is having trouble with meds.Is this normal do they ever find a med that works longer than one year.She has been in the hospital every year for at least one month.She is back in again she finally has developed insight.So taking her meds is no problem anymore.she has Schzio-affective disorder and has trouble keeping the drugs working.They have been thinking of trying her on Clozapine.They told her she would have to keep getting her blood tested every week.Any one have family members on it.Does it keep working where do they go from here.
Hi @worried1. My son has been on Clozapine for two years now. As with all meds, it takes a while to start really working, and then there are gradual improvements. For my son, it has been great. No horrible side effects, and he has gone from being in hospital 7 times in a year due to self harm (cutting), and completely psychotic to more of his old self. The meds have shown no signs of not working, in fact he continually improves, but not at a huge rate. Sometimes I have to think back to before, to see how far he has come, I’m here if you have any questions, at any time. Happy to help. Take care,
Our daughter started at the maximum dosage of Invega Systenna and it took 4 months for it to start impacting and reducing all symptoms. She was at that dosage for a year. By taking a shot once a month eliminates missed dosages and non-compliance. We slowly reduced down two dosages. It has worked and she works almost full time at a job that interacts significantly with the public. Coming up on two years and still having positive progress.
Hello NeverToo Late. We talked back in April, right at the time my 21 year old son chose to voluntarily admit himself after 7 months on 156 mg Invega Sustenna. His paranoia became just too unbearable for him and he wanted help. During that hospitalization, he was started at 234 mg. He’s now had 2 months at that dose.
If you don’t mind elaborating, what does your daughter’s daily functioning look like? Does she still have any positive symptoms? Does she have negative symptoms? How did you know it was time to go down to a lower dose? How is her cognitive ability? What kind of job does she have?
I’m hoping for the best for my son, but he’s still paranoid after 2 months at the 234 mg dose.
Positive - Her emotions are appropriate for most situations. She drives, works as a server at a upscale restaurant. She opens and closes it on some days, has taken a 300 level college class, socializes, dates infrequently, saves her money if possible, apologizes if she comes off rude or lashes out. Feels happy and sad for others. Has insight and remembers the good and bad during those moments when she was in a paranoid and delusional state. Walks for exercise. Negatives - smokes, eats a bit too much, goes through periods of trying to rationalize why she should switch to oral meds, very privacy oriented (we have guardianship so she probably feels that is her way of exerting control-we act only as backup. we let her make most decisions for herself, sometimes even if we don’t agree. Very much like working with a teenager again), works some days 11 hours… so time off she doesn’t do much. There are some gaps in memory, focus on reading is harder, definitely needs a good deal of sleep. We have dropped the dosage twice after 4-6 months of no change in display of emotions and responses for each situation, sleep routine expected, food consumption appropriate, grooming and care for self stays the same, etc. As long as there are no deviations from the norm…we are willing to go down. Goal is to achieve the least dosage possible to maintain the norm.
I can’t say it enough…I believe the Invega Sustenna at max dose level for almost a year at onset of paranoia and delusions was instrumental in dealing with the symptoms. Paranoia and delusions only appeared after a period of symptom progression that lasted 10+ years culminating in the extreme symptoms.
Wow. Ok that was an interesting read, especially all the parts about her work. I can’t even imagine.
My son has been on Clozapine for about 6 months now and he is slowly making progress.
Could you tell me if he has any additional weight from this drug Thanks
He did at first. He put on about 20 pounds. After he started feeling better, with less delusions and hallucinations, he wanted to go to the gym, daily. So, he now is normal weight for his age and height. He eats very little during the day, but no food is safe at night. If he wasn’t working out I imagine he would be struggling with it more than he is.
Yes clozapine really helped my 22 yo son. He takes 450 mg daily and now only needs monthly blood tests. They are very strict about this. Pharmacy will not fill prescription without results. At first it’s weekly then biweekly then monthly. He has been on it for four months and it has allowed him to live and work independently.
Yes my son did but not severe and not til a couple years in. They now want him on metformin too bc sugars slightly elevated.
Your daughter sounds just like my son. He works as a server full time and lives alone. He manages ok and has made a couple friends but no dates.
He is forgetful and his hygiene could be better. I hope someday he will quit smoking. I am just grateful he has this independence for now. Does your daughter still have bad days? My son will have voices randomly for a couple days then they vanish.
My son was on clozapine until this last hospitalization. It did not help him much, but he was not always med compliant with it.
I must say, if my son functioned as well as your daughter does, I would think he was cured!
Hi. Clozapine has been a miracle drug for my son. Before he would stay on a med for a year or two and then it would stop working and he would have a serious hospitalization. The year before he went on Clozapine, he was in and out of hospital all year. He started taking Clozapine at the beginning of January so he has been on it for about 5 months. At first he did gain weight ( about 40 lbs). But now he has stabilized on that. I see him getting better every day. He was very ill before and I thought he might have to be institutionalized. Now, only 5 months later, he jokes around sometimes. His delusions have gone away as well as his paranoia. He still has some anxiety from time to time. He has begun reading again and has started working on his car again. He was a mechanic but lost all interest in this when he was sick. Now he is talking about flipping cars and other ideas for making some money. His vocabulary is getting back to normal (above average) and he is talking in a very logical manner. I see him continue to improve every day.
There are hassles, but for us they are worth it. He goes every Monday to have blood drawn. We alway have to call Dr. To remind them to fax to pharmacy every week. He has some problem getting up and his schedule gets out of whack. But for us these are livable problems that we hope will improve over time. With the other drugs, he got “better” i.e. No positive symptoms. But with clozapine, he seems to be recovering more of his “old” self, his own personality. I wish your family the best.