How is your son is he still taking invega sustenna how many mg.
@Margi, yes my son is still on Invega Sustenna. After his first 2 shots in the hospital, he was on 156 mg for 5 months but he was again hospitalized and bumped up to 234 mg for 10 months.
To be honest, we havenāt had the good and hopeful outcome others have had, but I think weāre just really really unlucky. Our son is still paranoid and he has no life outside our home. But, on a very positive side, he spends his days in a happy and generally pleasant mood. Heās gotten weird though, as his illness has progressed, and his paranoia picks up in the evening. He lives at home with us.
It took @ 8 weeks for us to start seeing significant improvement in our son (from Formal Thought Didorderā¦extremely disorganized behavior, speech, etc.) on Clozapine. Things continued to get better for a few months but not much visible in the last 8 weeks. However, he is stable so we are so grateful for that. Counseling started a few weeks ago. He doesnāt talk about that but we are hopeful counseling with the Clozapine will help him eventually have better insight, He still struggles with primarily a single delusion which affects his demeanor but he usually manages through it or seeks help to talk with a close sibling or me. There was brief discussion about upping dose from current 400 mg. but he was not wanting that. Supposedly he agreed that if his struggle with recognizing truth vs. untruth continues, he would go along with higher dose. We are hoping to see continued benefit on this current dose. It has been 6 months. Soon to get lab work bi-weekly instead of weekly! He had lost 20 lbs. prior to this med (and we were concerned) and gained that back recently but lost 5 lbs. last month. He works out, walks and plays tennis. He has very minimal drooling. Grooming is OK, but could be better. He has talked about getting a job but I think he has anxiety about that and recognizes need to move slowly. I have to recognize that, too, and be patient.
Day by daĆ½ I am so sorry to hear that. Does your son have lots of sidefects with invega. Maybe this is not the right drug for him. My son says this drug is killing him he rather be dead then take it because it makes him feel so bad.
Thank you @Margi, weād like to switch to Clozaril, but our son has a long standing delusional fear of all pills and Clozaril only comes in pill form. Even if we want to switch to another injection, he would need to start it in pill form, to test it out. Itās very sad. The lingering delusions of his illness are still preventing him from making rational decisions to help himself get his life back.
As far side effects for my son, he complained of being very very tired at the beginning, especially right after the injections were given. After a few months, that totally started to improve. Heās still a low energy person, but I think thatās due to the negative symptoms (low motivation) of the illness. Also, my son put on weight. I believe that was due to his body adjusting to the medication as well as poor diet (over eating) and no exercise. With us restricting his access to unhealthy food options, heās managed to get back down in weight.
We parents have to make choices with this horrible disease. Even if there are side effects that our child is experiencing, our choice is we want him to be sane, so he can live with us and we can take care of him. We have to accept that heāll probably never go back to being the person he was before. Itās a tragedy, but it is what it is.
I know you know this, but the paranoia, hallucinations, and delusions of schizophrenia can feel totally real to the person experiencing them. Thereās a very very good chance your son is telling you he feels aweful on Invega because of the symptoms of his illness, not because he actually is being harmed in any real way by the medication. At this point, since heās still so very ill, your son would probably complain about any medication out there.
In time, I think and hope your son will start to realize he feels better, more safe, and more calm, and thatāll keep him on the injection. Thatās how it worked for us. After a few months, my son started asking when his next injection appointment was. He was starting to realize he needed the meds, to feel better and less freaked out.
Did the clozapine help with pacing for any of your loved ones? My son is on a pretty low dose currentlyā¦100 mg. When I ask him a question he can respond rationally enoughā¦but he literally paces all day, can focus on very little. He eats and paces. I am wondering if increasing the meds with help with this or having other meds wash out of his system is the answer (he is on risperdone which is being tapered down and he has also been on many others recently-including invega injection). I know patience is needed but it seems we have been so long trying to find the right meds for him. As everyone on this forum knowsā¦it is such a frustrating process.
Also, i was wondering if you notice any of your loved ones on clozapine, if they are not able to focus on most things yet are able to sit through a 2 hour movie and then immediately afterwards not able to focus again. It seems very selective to me. Could it be because the movie screen is so large. Curious if anyone notices this kind of thing?
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100 mg is a very low dose of Clozapine. Have you asked the doctor what the plans are for it? Is the doctor titrating and expect to increase the dosage gradually over time? Does the doctor know that your son is pacing so much? Our son had a few days of extreme pacing and then it went away after a brief time on another A/P. But he did not stay on that A/P and the pacing never came back. Since he has been on Clozapine, he was also prescribed an anti-anxiety med (I forgot which one) but he never takes it and doesnāt really seem to need it. So, I suggest that if Clozapine is not stopping the anxiety, it might be co-prescribed with something else that does, presuming that pacing equates to anxiety? I found this on another site: āThe usual dosage of clozapine is 300ā600 mg per day; however, some patients may require daily dosages of up to 900 mg. To minimize side effects, the initial dose of clozapine is 12.5 mg (one-half tablet) twice a day, and the dose is increased by 25ā50 mg each day, until the dose reaches 300ā450 mg per day. The daily dosage of the drug is then determined based on the individual patientās response, but increases should not exceed 100 mg once or twice a week.ā I think best to stay in touch with the doctor.
This is definitely a challenge for my daughter, but it can also be when we are watching a movie in Netflix at home as well. For my daughter it is an issue of chronophobia, her thinking that if she is not doing something āproductiveā she is wasting time and the idea of wasted time can give her anxiety.
I was wondering anybody has found any non medication ways to deal with the drooling that is associated with clozapine. Because my son does complain about that alot, I dont want that to be the reason he stops taking the medication. Adding another med to counteract the side effect will likely not be tried.
I Googled and found these suggestions for drooling caused by anti-psychotics:
- suck or chew sugarless candy or gum to increase swallowing
- place a towel on the pillowcase to prevent soaking the pillow overnight.
In the past (when Clozapine was first introduced and before his body became better adjusted to it) I gave our son a menās handkerchief to keep in his pocket. (Iām honestly not sure if he ever used it, though.) He still has some drooling after 6 months but I donāt see it; I just hear him make a little slurping sound sometimes. He does not complain.
Thank you for the tips! Another question for the groupā¦how long did it take for your loved one to respond to clozapine. My sonās meds have been recently increased to 200 mg a day. I notice he still talks to himself while he paces and has trouble focusing and making sense at times. He will go from one sentence that makes perfect sense to saying something that is completely random and made up. I try to just ignore that part but it catches you off guard. I dont know if the clozapine in time will help this? Has anybody else had this situation? Your input is greatly appreciated!
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My son had Formal Thought Disorder, which included extreme disorganized behavior and speech. His FTD is now entirely gone after 6 months except his vision is still affected (but glasses correct the vision). It took a good 2 months before we started seeing major improvement. I know of and read about others with much success (and continued improvement even after years) on Clozapine. I suggest reading this book. It was recommended to me and I found it helpful. Amazon.com
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My mom started showing improvements rather quickly. I would say within a week or two for sure. Iām not giving medical advice (Iām not a doctor) but I would talk to your sonās doctor about Lithium. My mom was also not doing well mentally a couple years ago and she benefited from from taking lithium with the clozapine to help with word salad/word repetition/focus. Another thing you can check is to have a regular blood panel done of your son to rule out something physical. Maybe youāve done this already?
Clozapine was a lifechanger for my mom and her mental health. Sheās been on it for at least 20 years. I would never even dream of replacing the Clozapine.
Thank you, I will definitely read this book. I am trying to remain hopeful ā¦ may i ask what dosage was found to work for your son, and does he take mood stablizers as well? Also, did you have to set up activities for him to do throughout the day? (Sorry, I am asking so many questions). I dont know how to get my son out and interested in things on his ownā¦not sure how much to push or maybe it will come naturally once he is on the right dose?? He is always up for going out to eat but he doesnt want to do the gym or an art class or really anything else. I have never been a very āstructuredā mom or person, however it seems with this illness that would be a benefitā¦it is not easy to impose the structure but I will do anything if it will help my son. Iām just not sure what resources there are to entice him. I dont think it is wise for him to drive my car, so that is limiting. With clozapine, did your son re gain his own interest/motivation in life?
I donāt mind answering these questions but I think you would have more useful information by looking at recommended dosage levels, with the average being 300-600 according to what I have read and considering that each person is unique. Our son has settled at 400 but it is possible he will need a bit more. And even then, things can change. He was prescribed an anti-anxiety med but he says he doesnāt need it and he never takes it. I canāt say enough how each person is different. Be patient with this medication and do not push your son. Look for ways you can encourage him and where his strengths are. This will likely change over time and what happens in the brain and what we see can even change from moment to moment. (I think eventually, or at least hopefully, it gets more regulated on med). Do things with him to the extent possible. Give his mind opportunities to rest during the day. If he needs structure, provide that where you can, but remain flexible as long as it is within any boundaries you have set. You still have a life and right to time for yourself. There is no one right way to do this and what worked for one person might not for another. If there are problem areas, you can set boundaries but give him grace while he is doing what he is supposed to be doing (that is, taking the med!!) Learn and watch your son for signs and cues as to how he is feeling, if he is hearing voices, if he has paranoia, etc. Listen when he does talk. Show interest in what HE thinks, even if you donāt agree with it. (In other words, use LEAP (Listen/Empathize/Agree/Partnerā¦this is discussed elsewhere.) I am convinced that LEAP is important (that there will be more successes and a better relationship) for most people even when their loved one IS taking meds, let alone perhaps our only hope for persons who decide NOT to take meds or other treatment.
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Thank you so much! The support and advice helps me greatly!
My son started on clozapine at the beginning of dec 2018 with 12.5mg and a week back he was upped to 200mg from 150mg. He is also on several others like mood stabilizer depakote, another antipsychotic haldol, antidepressant welbutrin, klonopin for anxiety and zyprexa 20mg AND invega sustenna 247mg/monthly injection. As the clozapine went up dr had him off of zyprexa. and the plan is that as he goes further up on clozapine doctor will also switch off invega shot gradually. I see lot of improvement but it is not very visible to other people because while he was titrating up on clozapine , he was also tapering down on zyprexa. He is much more calmer and peaceful now. I bought him some food coupons for buffet lunch which he says he will take the food and eat at home because he can not sit and eat at the restaurant. I suggested him to eat at the restaurant. So if he tells me that instead of packing the food and eating it at his own place, he ate it while sitting down at the restaurant, it will be a big step forward and I will be very happy. But these kind of improvements, only I can see. God is helping my son and also giving me patience. Thanks everybody for your support.
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100mg very low dose. They usually do blood tests for levels of clozapine. 350mg is a normal dose. But if he is doing well at 100mg less is always better. My grandson functions very well now
How much is your son taking?
My son is at 200mg/day 100mg morning and 100mg evening. Doctor is going up slowly. 10 days back only he was raised from 150 to 200. Probably next month doctor will again increase it to 250mg. I am keeping my fingers crossed