Maybe some of you remember me - I’m sure there are lots of new people here since I’ve been gone.
The short story is that my son’s zyprexa stopped working about two years ago, so he stopped taking it as his symptoms got worse - then decided he wasn’t sick & didn’t need to take anything at all. That led into several manic episodes, 5 hospitalizations in 10 months, a failed Invega trial and, finally, clozapine.
He’s stayed on 200 mg of Clozapine per day for a year. All blood tests have been normal and he just graduated to once/month blood tests.
He sleeps pretty well now, although he has gained quite a bit of weight. That’s stabilized - he’s only gained 1 pound in the past 3 months. He does not appear to see or hear anything that’s not really there, but some of his delusions remain. No new ones - it’s just the things that were like false memories haven’t went away.
He is just starting to function a little better, in small ways that won’t mean much to anyone who hasn’t supported someone going through this kind of thing. He’s met with his case manager in public twice, and today he let her pick him up with some other people in the county van. They went to the local zoo then went to McDonalds. That’s a huge thing.
He still has a lot of anxiety about some things - I don’t think that’s going away. But, the little steps are great.
I know there’s a lot of fear about Clozapine and it’s not for everyone, but it’s been good for him.
It’s so nice to hear from you slw. I’ve often wondered how you and your son have been doing with the Clozapine. I’m so glad he’s been stable. I hope you’re OK too. I know you all went through some serious hell. I absolutely remember that.
My son has been on Invega Sustenna injections (maximum dose) for 10 months now. We’ve certainly had our ups and downs, but progress has been steady. A hospitalization here, another one there, but life is manageable now for our family.
Many old-timers are still here. I’m sure you’ll here from them. Others are gone. Some I worry about.
I had high hopes for the Invega injections, so I’m not knocking them when they work.
His first shot was pretty amazing until it gave out before he was due for the second one. Then, he never was able to get the same results again, no matter how high they went with the dosage or how early they gave it.
I am OK. We’ve been through a lot of other things in the past year too. My father-in-law passed away from cancer, our favorite dog also passed from cancer, my husband has had some major health issues, and some other things have happened. Hopefully, life’s done smacking us around for a little while.
Yes I seriously hope you can catch a break. I’m sorry to hear your husband has had some health issues, and I do remember when your dog (a beagle?) was diagnosed. I hope you were able to have a peaceful ending with him. We lost our dog to cancer a year ago, during a terrible unmedicated phase in my son’s illness. It was an awful experience.
Invega Sustenna has been no miracle drug for my son, I assure you. I think my son is just that ill. Maybe we’ll get a chance on Clozapine some time soon, but I’m not putting my eggs in any basket.
Our dog’s cancer was heartbreaking. We spared no expense - tried both oral and IV chemo, medical marijuana plus supplements/accupuncture/ozone treatments from a holistic vet.
He went from eating like a little pig to literally turning his nose up at steak because he was feeling so sick from his kidney’s failing.
We did have some early success and stabilized his kidneys for months, but nothing seemed to even slow down the tumors in his lungs where the cancer had spread. He seemed to keep having good days, so we probably held onto him longer than we should have, but we just weren’t ready to let him go.
We took him to the emergency vet to see if there was anything we could do to ease his breathing when he went downhill overnight. They said his lungs were almost completely full of tumors. We asked for them to give him something to ease him up until we could get him home and have the house-call vet come to put him to sleep since he hated being at the vet. They warned us that he may not be strong enough and it could kill him, but we took that chance. He made it out to the car and died in my husband’s arms.
We miss him terribly, but by coincidence, the older man that we get most of our dogs through in the next state over called us about a male puppy with some of the same bloodlines that afternoon, and it seemed like fate.
We picked him up a few days later, 6 years to the day since we had gotten Jack. It was too soon, and we’ve spoiled him terribly because we were so heartbroken. Not the same as Jack, very different personality wise, but still a good dog. He’s very timid where Jack was fearless, and he’s much, much sillier. Jack was a bit aggressive for a beagle - he doesn’t seem to have an aggressive bone in his body.
We have 15 right now. 13 beagles & 2 huge, 100+ pound mixed breed dogs.
But, Jack was our baby. The new puppy has helped with the grief too. He’s very sweet and likes to cuddle, sometimes a little too much.
He’s good though. If you want to sleep in, you can get up & let him out, then put him up in the bed with you & he’ll go back to sleep with you for a few more hours. Like I said, he’s very, very spoiled - I’m cooking his dinner now.
Of course we remember you You were the first person I ever talked to on here. Glad to hear that there has been slow and steady progress for your son. Have thought of you since and was wondering how things were going. So sorry to hear about the hard things you have been going through. Awesome that your son went on that excursion. My son still wouldn’t do that even though he has been on clozapine now for just over two years. Many other progresses though. Take very good care of yourself @slw
I remember you! … and those things you described are very big and something to celebrate, even if just quietly. I am so happy for you and your son. The progress is very slow but it is steady. It’s been over a decade for my son on the clozapine and I still to this day see small improvements most people wouldn’t notice.
He too (the first year or two) gained about 90 pounds and was up to 305 at one point (he is just under 6 foot) Now with his daily walks and being more conscious of what he eats he is down to 260. Improvements continue. Glad to get the update. Stay well.
Leiann - I’m surprised he did, but he has a really nice, understanding case manager who’s willing to take it very, very slow.
She’s supposed to come to the house to visit with him, but that would violate his safe space, so he started off meeting her about once a month at the office.
Then, after a few months, she got him to agree to meet him for a coffee. We chose Starbucks and I drove him there & we ordered his coffee from the mobile app so he didn’t have to order or pay.
About 2 weeks later, they met at the donut shop. She doesn’t drink coffee, so he thought that would be more considerate. That time, he’d have to pay himself so I got him a pre-paid Visa gift card & we went to the convenience store to try it out before he met her.
Each time, he’d spend about 15 minutes with her, then we’d drive home.
Today, he was gone for about 3 hours. We live closest to the zoo so he was the last one picked up, but still takes about 20 minutes to get there. They stayed for a little over an hour because it was hot, then stopped at McDonalds. He seemed OK with it when he got home & told me about some of the animals he saw. I think he had a good time.
That’s not to say he isn’t anxious about it. I think he lost a lot of sleep over the weekend worrying about it.
Catherine - I often think of your son when I notice a small improvement. You’re how I know that it can continue for so long. Not a single one of the professionals explained it like that.
Hi slw, I remember you and your son. So very glad to hear he continues to do well on Clozapine. Sort of figured that he was doing well since we didn’t hear from you. My friend’s son kept improving steadily with Clozapine, after 8 years she was still seeing progress. As you have pointed out, they are major milestones that can seem small to people who are unaware of the journey.
You guys have a rough year with the loss of your father-in-law and your husband’s health issues, so glad the Clozapine has been a bright spot.
Thanks so much for the update - it means a lot to the forum. Take care, Hope
Our experience with Clozapine has been a bit more mixed, but still - it has also brought a measure of stability to our lives. Thank you for bringing an update!
Your previous posts have been helpful, and Clozapine may eventually be in our future, so it is good to read about other’s experiences. I understand how the little things are HUGE things in our lives!! Thank you for sharing.
Wow one year already slw ! I was only thinking of you last week.
Really pleased there is a slow, steady improvement for your son.
Sorry about your father in law and your dog.
I can honestly say it does not seem like a year, it’s passed so quick.
Hopefully it will continue to steadily improve more.
Clozapine has worked miracles for my daughter. She was diagnosed with schizoaffective disorder at 15. The next 3 years were hell- multiple med trials, multiple hospitalizations. I was desperate and decided to try clozapine. Her progress over the last few years has been remarkable. She still has intrusive thoughts, anxiety, mild mood swings. But she is social again, taking care of herself, pursuing interests … I hold my breath that this may change but mostly, I am so grateful.
My son first got sick at 15 too. It was so sudden, and so scary, and because they wouldn’t tell us anything about what might be going on when we took him to the hospital, we brought him back home when he begged us to. He got some sleep and came out of it without meds.
He’ll be 29 next week.
Maybe Clozapine would have been best for him from the start, but he Zyprexa worked so well for him, until it didn’t.
I’m very thankful for the Clozapine. Maybe he’ll finally get a chance to be social for once in his life.
Hi I was not posting a lot back then, but I remember reading your posts and how informative they were for me as a newbie on this site. Glad you son is doing good and going to the zoo is a huge accomplishment. My 23 year old is taking 20mg of zypreza and is stable on it, I sometimes worry it will stop working suddenly, but I guess I can’t worry over everything. One day at a time.
@Irene - Zyprexa is a wonderful drug. My son stayed stable on it from the time he was 18 until he was 26/27. I think that was a pretty good run.
And, I don’t think it stopped working suddenly - I think it was a gradual thing. Or, my son’s illness progressed. It’s just hard to say. But there are other drugs out there, and they come up with new ones all the time.
I have to say as good as Zyprexa was for him, I don’t think it was as good as the Clozapine he’s on now though. For him anyway. But, it also means that I get to worry about what happens if the Clozapine gives out because it’s supposed to be the drug of last resort, when nothing else will work.
You were the first person I ever talked to on here. Glad to hear that there has been slow and steady progress for your son. Have thought of you since and was wondering how things were going. So sorry to hear about the hard things you have been going through. Awesome that your son went on that excursion. My son still wouldn’t do that even though he has been on clozapine now for just over two years. Many other progresses though. Take very good care of yourself