Zyprexa kept my son stable for 6/7 years, then either it stopped working or his illness progressed.
He stopped taking it and lost his insight - they hospital would put him back on it, he’d have some success, then he’d come home & stop taking it. I’d sneak it on him and know he was taking it - it really wasn’t working anymore, even at high dosages.
Next. they tried Invega Sustenna - it would look like a miracle drug, then cut out on him early & early, even on higher & higher dosages.
Now, he’s on Clozapine. He’s not perfect, but he’s better than he has been in 2 years - and we’ve finally had 3.5 months of no hospital after 5 trips in 10 months.
Zyprexa is a very good med though. When I was researching Clozapine, they were saying Zyprexa was a newer, better drug that worked like it but without the need for bloodwork when it first came out.
Yep,this is a new learning curve for me, daughter is 25 and at 26 BCBS will drop her off my policy, attorneys working her disability denial now, so before the age of 26 I need to figure out all this free stuff of my area… Another very stressful process to incorporate in my hell… When you make good money with good insurance the cost is high and you get the shaft, BIG time with no lube… even with BCBS and the burdens of two SZs I spend more on docs and meds than many people make…
I had no problem keeping my son on my insurance as a disabled adult child, but I’ve never had BCBS.
He’s been approved on both Aetna & United.
However, I did end up getting him on both Medicaid & disability this year. I had put it off for years (he just turned 28), but we finally ended up at our county’s mental health center because he wanted to see a therapist and many would see him only to tell him they weren’t qualified to help. This is when his disease suddenly progressed & he went from having insight to no insight at all - and regularly hearing voices. I don’t think he knew exactly what was going on, but he was terrified.
As things moved along, they wanted to have him in their “Star ICT” program that’s for people with serious mental illnesses. He won’t accept many services from them yet, but they run a clubhouse program, they would do medication management, they have nurses & case managers that would come to the house, they could process an involuntary hold if we needed them to, they do housing & help with employment - pretty much anything you can think of.
I also think that being part of that program helped with everything else too.
He has to have Medicaid to participate in that program. However, if he had no insurance at all, he could see a psychiatrist not with that program but in the same office for under $2.
I had put off going there for years because I thought that it would be some awful clinic with long waits, substandard care, etc, but I’ve been very pleasantly surprised.
I’ve had no real problem with them covering his medications either.
fyi, I have BCBS, my son has stayed on my insurance past the age of 26. It depends on the particular plan your employer has whether a disabled person can stay on a parent’s insurance.
My son had a worsening of symptoms when Trileptal or Lamictal yes we tried both, was added to Invega. Unfortunately for my son the Invega injection only worked for about a little over a year and then he started having symptoms again. He has since been on clozapine and while everybody seems sort of scared about that drug he has improved a great deal over the last year. Fortunately his psychiatrist believes in monotherapy rather than cocktail. I think the most important thing anyone can do as a caregiver of someone with schizophrenia is to ensure that the medications are taken consistently. And sometimes that’s very difficult because it means physically going over and watching them take the medication. I often wonder if consistency isn’t absolutely the most important thing we can do as caregivers.
Consistency is very important. I discussed this often with my patient’s family members. I work with a lot of noncompliant patients and most family members are exhausted and/or do not want to take on the added responsibility of micro managing an adult’s medication. I continue to explain that your love one needs this level of help because he or she has a brain disorder.
I recently wrote an paper on Clozapine and in empirically- based studies, it was by far the most effective for treatment-resistant and those with suicidal ideations. When I can get my son compliant again, I would like him to start with this but they usually require that patients not respond to other meds first -not sure how often that holds true. Needles are a trigger, so that would be a major issue when having to get bloodwork - always something.
My son doesn’t mind the bloodwork nearly as much as he hated that Invega Sustenna shot.
And, I think it’s going to the lab that’s a hassle - the needle isn’t even the issue.
We always pick a time when it’s empty to make it faster. We’re usually in & out in less than 10 minutes, and the people there know him by name now.
Trust me it is not easy for me to say especially since I have to deal with this condition both professionally and personally but I see the differences in patients who family members are actively involved (less hospitalizations and better quality of life). The family members I meet are not at the 24 year mark, most of them are just finding out or hitting the second or third year and truly don’t understand mental health. I am not saying the “New Norm” is easy so I get your frustration, it does not get any easier and when your love one is stable, we have to cherish that moment.
It has been 14 years of hit and miss, so yes I get exhausted. But in the big picture, taking a pill over to my son once a day is a small thing. And I see results, he is actually smiling more, laughing , getting back to playing golf. He attended his grandfathers funeral today, clean shaven, suit jacket and thanked people for coming. Is it a hassle to manage his meds, an inconvenience to me? Absolutely. But to see him shine, even if it is short lived is a gift for us both. I think there is something about struggling with schizophrenia for both of us, is we both have learned, there is no past or future, you live in the moment and you do the best you can.
I think my concern is that the medical profession doesn’t have the solutions either, they just hand off to the families. Often families have loved ones with no way to keep them on meds. They can show up regularly with the med in hand, getting them to take it is a different matter entirely.
Lots of actively involved families, can’t keep their family members on meds, that’s the reality. Even those who aren’t on meds have less hospitalizations and better quality of life if their family is involved.
I am not saying it is simple or the medical professionals have all the answers. You are right the mental health system is “broken.” Everyone appears exhausted in not having the answers or the right solutions. People are discharged from the hospital to their family and back to the community without the right resources. I am just encouraging families to stay involved and I am not saying it is easy.
If a person is not medicated and having a better quality of life, great. This is not the population I encounter. The patients I deal with are having a painful existence and it is affecting the quality of their lives and their families.
Better quality of life for people with unmedicated schizophrenia would not be comparable to better quality of life for people with schizophrenia who are medicated.
You would have to compare apples to apples, oranges to oranges to be accurate - and to be fair to the families.
By this it would mean people who are unmedicated and have involved families do better than those who are unmedicated and don’t have family support.
Its important that we remember that supposedly 70% of the population with scz is unmedicated. If you are only encountering those that are on meds or whose families are trying hard to keep them on meds, you are missing the majority of the scz population.
Better quality of life for our loved ones with mental illness, does not mean better quality of life for us the families - that’s for sure - lol.
My son hated the Invega shot but it seemed to help then play out. We have seen no PTSD outbursts or episodes since he has been home from hospital so it must have been enough to stabilize him. I refuse to say more for fear I’ll jinx us😉.
Update…Well my son has been on the new medication cocktail for a week. I have noticed an increase in energy (he appeared to be oversleeping at times) and a return to smoking cigars and marijuana (very concerning). He is still talking to himself but not as loud when he is around others. He is still delusional at times but more willing to socialize with others.
Update…the Psych Doc changed my son’s medication cocktail to Invega Sustenna (234mg), Seroquel (100mg) and Trileptal 750mg, 2x a day. It has been about two months with the Seroquel as oppose to the Zyprexa. Not much improvement. I have scheduled an appointment to see a neurologist/psychiatrist to get another perspective on these prescribed medications; its on February 12th. Everyday is like the unknown; he is so close to being hospitalized due to the delusions and responding to internal stimuli. Some days are better than others. I feel so loss right now.
@treece29 …i was on the Invega Sustenna back in 2009. (also i was on Zyprexa back in 1999). I never heard of the drug Trilptal. But that Invega? it would take many months for an effect to be felt. It wasn’t until they added Abilify that my mind would clear. It took 5 days for that abilify to truly work its magic.
Its like the Invega pruned a field within the brain. (creating new pathways). but the Abilify planted the seeds that would take root and cause healing. It took months of Invega, (and then the new drug Abilify 7-8 months later) till the change could be felt and seen to not only to my family ( but myself).
Hope this helps!!
PS> I am no doctor. But Seroquel? did nothing good for me. It was garbage. It made me a zombie. I do very much recommend Invega Injections. (and Abilify) its NON sedating. It works. But the doctors rush to judgement a lot. (and over medicate) Being drugged and sleeping 16-18 hours a day. Won’t help.
The brain chemistry changes (i know…i lived it)
I’m not a doctor. But his dose seems pretty extreme. (I was once on 800 mg of Seroquel) It was a nightmare. I learned a very valuable lesson. As a patient, I have the legal right to say NO to taking a med. You don’t have to “accept” one doctor’s method of medicine. You have a right to a second opinion.
I’ve been in the system for 20 yrs. Trust me. ALL doctors…are not created equal. Some are good. and some are bad. You are the best advocate for your son. If he isn’t getting better? its time to look at seeing another doctor (or therapist) …both if possible.
The doctor that healed me. I told her. “No one has ever been able to help me” …and she said? ok. Lets start over. Let’s start from scratch. So, i began over. This time. I had a voice. I spoke honestly. She was my age. ( I was 39) at that time. And she worked a miracle. she was my Anne Sullivan. (and i was her Helen Keller) …she is one of the BEST Doctors…i ever worked with She listened. And she made her own analysis and decisions about my care …and meds.
Hope this information helps. …i’m here if you need to chat.