I completely understand. I will go thru periods when things are a little better, and start feeling hopeful, and then feel like my legs get kicked out from under me.
Hi Rosie. If you don’t mind me asking, what other meds did your son try before the Clozapine?
We too are desperately hoping to find a med that’ll do something more. Right now our 21 year old son is at the maximum dose of Invega Sustenna, but he’s still so paranoid. It’s so deflating and just feels hopeless. Our son barely has a life.
In a normal world, we can just “give up” on something that’s not working out, like a job or a relationship. We can just “move on to better things”. We can’t with this illness that’s taken over our children’s brains and possibly their future. It’s our life sentence I guess.
I guess I’m having a “ legs kicked out from under me” moment.
Yes. It is crushing, crippling, debilitating, catastrophic and grim with no end in sight. My son was on Latuda, Zyprexa and Seroquel before starting on Clozapine, none of which worked. In one of the programs we had him in, he had a great psychiatrist who has experienced this firsthand. He has an adult daughter with schizophrenia. This made him particularly sensitive and knowledgeable about treating schizophrenia. Also, when Clozapine was in its trial stage before FDA approval, this doctor was one of the doctors who worked with patients at one of the trial test sites. So he has been working with it a long time. He told us that his goal for our son was 500 mg from the get go. I gained a lot of respect for this doctor and that gave me a lot of hope with this medication. So now he is up to 500 mg and we are waiting to see if and how much he can improve. If we don’t see some improvement soon, I don’t know what we will do. They will either increase it or add another AP on top of it. I don’t know. I am at my wit’s end trying to get him help.
All of your adjectives to describe this experience are accurate, but I’ll add heartbreaking.
I’m so glad you have a Psych doc that really understands this illness, from actual personal experience. You know he’s invested. He gets the importance of being aggressive.
I imagine/hope we’ll be starting Clozapine on the next hospitalization.
Clozapine changed my grandsons life. He is on 450mg and 25 Lamictal. He is back to work actually holding two jobs and wants to move out with a friend. Its been a miracle but He did gain over 100 pounds but has now lost 70. He is making friends again. Like I said it’s been a miracle
I so love to hear these success stories! Glad your Grandson is doing so well!
I hope it works it’s my understanding they can go up to 950mg. Has to do with his therapeutic level in his blood work. Also if he smokes that gets rid of the Clozapine try to get him to vape if he smokes. Good luck. I also heard Saphris is showing some progress
Just reading this entire post…I recently heard a psychiatrist at a highly respected treatment program speak on anti-psychotics and he include comments on pharmacogenetic testing, which uses targeted gene therapy technology. It is considered to be a once in a lifetime test providing a prediction of whether the person has normal, rapid (need higher dose), or reduced (need lower dose) metabolism of different medications, and thus appropriate dosage levels. He said it was most typically done when (a) the person has been on a lot of things and not done well or (b) has had a lot of side effects and not tolerated other things well. With a relatively new doctor that we have, both this and Clozapine are being considered. At this point, we are talking quality of life with side effects vs. no quality of life unless things change now that it seems our son has been given as much ECT as he can tolerate, and he is also on some other meds. So I am interested to read what others have observed with Clozapine, but knowing that each person is different.
Clozaoine gave my grandson his life back. Hr did gain 100 pounds but he has lost 75. And he does have excessive drooling at night. But working 2 jobs now making a couple of friends and he has been vlean almost 4 years
My son’s quality of life has been improved with Clozapine. His psychosis is reduced. This is the third year he has been on it. In the last year he has begun making more attempts at socialization. My son LOST 60 lbs after starting on Clozapine.
My son takes one 2 mg benzotropine tab at night and it has greatly reduced the drooling. No side effects either that we have seen.
I hope it works for him. It did wonders for my grandson
I know of someone who could not tolerate Clozopine (due to vomiting) but who does very well on Thorazine, Depakote, and something else which I don’t recall. I am told by a professional that there are few people who don’t tolerate Clozopine. But we are always considering if there is something else better for our loved one.
Just reading this, so don’t know if you are still on this site, but I am so sorry for your earthly loss. For all of us as well as for my loved one, I am determined to keep encouraging others, to keep learning, and to never give up hope. For those whose loved one is now gone, please believe that you did everything you thought was right to do at the time. My heart breaks over each story. Each loved one is important, and each story is an inspiration to me.
I believe that there are good residential treatment programs (not long-term residential but potentially useful to help the person gain skills to manage illness and/or to gain insight to acknowledge sickness and the need for medication) and personal care homes but they are not necessarily easy to find. They also may cost a lot of money but don’t rule out the possibility for private or government insurance. The more you talk with families dealing with this illness (I suggest NAMI support groups and NAMI Family-to-Family class), the more you will get inside information. I know of many persons with SZ, many who are on Clozopine doses ranging from 400 - 700 who are living independently in settings designed around SMI (Serious Mental Illness), who have jobs and drive a car, for example.
I have heard of this too…persons getting advanced degrees while on an anti-psychotic. I think you are wise to try sticking with Invega. There are also different dosage levels of Invega. But it’s good to be aware of other treatment options such as Clozapine.
One of the principles I learned in a NAMI support group is that there are some things we can’t change and that we must learn how to cope with that as well as with the effort involved to change the things we can. That can look different for each person. I also learned that there is hope for a better future. You will not learn everything you need to know from a doctor or from this site. If we want to pursue something better, then it is helpful to pursue knowledge and wisdom from a lot of different sources. If you have a loved one who is not cooperative with medication and or talk therapy, the starting point in my mind is looking at Dr. Amador’s website and book “I Am Not Sick; I Don’t Need Help”. I realize that there are some of us whose loved one is missing, or with whom they do not have contact. In those situations, it is harder, but there are still things we can do. This illness is rarely static. Things change. I encourage you to be ready and to take care of yourself.
I have been told that common side effects like drooling and excessive sleeping will eventually subside. But everyone is different.
I am especially interested in this subject because we (with two doctors’ and another professional’s recommendations) are wanting to get our son on Clozapine. It’s a long story…and I was not in favor of this when it was first suggested…but now that we are at this point and we really think it is needed (quality of life vs. very little or none), our son’s CBC count came back too low to start Clozapine. I need to ask more questions, because I understand it is actually the ANC part of the CBC that is significant. Has anyone had challenges with keeping the ANC high enough to start and continue the Clozapine regimen? I’m sure I have more to learn about this.
I asked my friend the former FTF instructor and trainer if she would respond to your question - here is her reply, I hope it helps answer your question. Her son tried everything else and finally had excellent results on clozapine. Here is what she replied
“My friend’s son had the same thing happen. Years later his white blood count was high enough to begin clozapine. Why did that happen? I don’t know.
If it were me, I would first ask my family doctor why the white blood would be low, and if anything can be done to raise it. (diet, vitamins, tests to determine why it’s low or whatever the family doctor suggests) Google might help here, too.
If there is no help from the doctor, then I would wait a month and ask for the lab tests to be run again. My son did have one test come back low about a year after being on it. If he had had a second low test immediately following, he would have been kicked off the drug. He never had another low test result in 9 years. It must have been a fluke.
I’m curious - why has she been against clozapine? Bias against it before even begun can be a stumbling block in follow through. Imo, clozapine is a wonder drug (although, not without its own side effects), and it is also a difficult drug to keep juggling all the balls necessary to keep up with the regimen. You do need commitment, persistence, patience, and determination to the ongoing process of getting the prescriptions on time. “