Clozaril day 1?

So...they (my doctor, mostly) FINALLY got everything straightened out and filled my script for Clozaril this evening. It is a confusing 3 week taper up with blood work every 2 weeks. But, the pharmacist, as I was picking up the script, asked me if my doctor realized I was still taking Klonapin and was planning to monitor me and I said yes. Upon driving off, I felt a little heavy and, thinking that my doctor has already screwed up THREE things on this med, decided to call the pharmacist back to discuss this further. She advised me that the risk of interaction between clozaril and klonapin is a moderate one. She advised me that clozaril can increase the sedative like effects of the Klonapin and cause confusion and even respiratory issues. Did my doctor mention this? Uh, no. She told me not to just stop the klonapin without my doctor's consent but instead, if I was uncomfortable, to wait until Monday to discuss this with him. I see him Tues anyway so I think I will wait until then. My husband is in a hurry for me to start this because he thinks it may be what we have been waiting for. My mom, mother in law and me, not so much. My mom and mil are almost completely opposed to it and my doctor at this point. I am just exhausted.

When I started taking clozapine it had a sedating effect but that wore off after a few days.

Were you taking Klonapin also? Did you have any adverse reactions from the drug? How often and long did you have to get your blood work? Thank you!

Good Luck, cashart!

My dr hasn't said anything about klonopin having to go and I'm on 2 mg every night. So she must not think it is a big problem although I'm extremely hard to sedate which might make her worry less. But generally she is very on top of things and I know she's run an interaction checker on my meds at least 2 times, I think 3, while preparing for this.

Blood work every 2 weeks? That's unusual. The drug recommends (and I thought the registry required) every week for 6 months. My pdoc just had to do a training on it a couple of weeks ago so I know that is the most up-to-date information they are using at my hospital. She'd thought I'd need weekly blood draws for a year until that training so I was really glad for the timing of it.

I wouldn't take it until I had all my questions answered and felt ready. I know you really need to be on something ASAP but I know that I feel like I need to be 100% committed to this stuff before I take my first dose although that has more to do with coming off Seroquel than the clozaril; once i'm off the Seroquel my safety net is gone and there won't be one until the clozaril is working, if it works. With everything going on the last 5 days I've been running on adrenaline and feeling like I'm suddenly better but as the adrenaline leaves I am faced with reality again. I think I just want to keep putting it off month after month for as long as I can stand it. And if I have to come off Klonopin too I may well do that .

I wonder if everyone on this drug has had the weekly tests? My doctor has made it clear that he anticipates 2 week blood draws and I have a 28 day supply of meds. He has also made it clear that he is not entirely certain about anything regarding this med and has me questioning whether he has ever prescribed it.

There is a clozaril registry which puts out this brochure on how it is supposed to be handled:

https://www.clozapinerems.com/CpmgCl...Caregivers.pdf

My understanding is that you aren't supposed to get more than 7 days worth at a time for 6 months and that is supposed to be strictly adhered to. I didn't think the pharmacy was allowed to dispense it though so if yours did maybe that's a guideline and not a requirement?

This is the website for the registry itself: https://www.clozapinerems.com/CpmgClozapineUI/home.u

My dr at a major teaching hospital and specializing in difficult to treat patients has 2 patients on it and had a 3rd but that person moved away. It is not commonly used. I don't think my family dr knows much about it from a comment he made. I am not sure it is used by many pdocs at all but I don't think you can prescribe without being part of the registry which seems to require education be completed. How much someone takes away from that though would be up to them. What is weird is that the education requirements just changed and he should have had to take a course in the last 1-2 months so should be up to date on everything about it as should your pharmacy.

Do you trust him enough to take it?

I haven't decided.

Thanks for all of the information though. It seems if I want dependable information on this drug and it's side effects and interactions I am going to have to research myself and depend on my pharmacisit.

I had a patient on it at work...he had blood tests every week and the pharmacy wouldn't even send the next week's supply until we faxed them the lab results

That hasn't been my experience at all. I dunno. But, like I've mentioned , I no longer trust my doctor. The pharmacist however, I would imagine they should be following procedure. I know they can only dish out certain numbers because my pdoc originally said 15 days and the pharmacist contacted me and my pdoc and said it was not allowed. That said, I currently have a 28 day supply. Enough to complete my taper and then some.

Just checkedy rx and I have 62 total pills.

I started taking clozapine in 2007 and at that time the requirements were CBC with diff every week for six months, then every other week for six months, then every month for as long as I continue to take the drug. I think only about 1% of people have problems with their white cells; I've never had any problem. Clozapine is cheap too which is a boon.

Well my appt today actually went pretty well. My pdoc claimed that the reason he didn't mention the drug interaction was because he knew how I metabolized meds and that I would be fine. He then told me to cut my Klonapin in half from 2MG to 1MG as the Clozaril is sedating so there was no reason to remain on 2MG. I have my doubts about his knowledge of this though. I also told him that everything I had read stated that blood work was required weekly but that he was prescribing it biweekly. To that he said basically that he thought they had moved away from one week to two weeks but that if I felt more comfortable he would prescribe it every 1 week. So he did. He said the few times he had prescribed this medicine he had no problems from his patients and given the way I metabolize meds, he didn't forsee it a problem for me either (even though it seems to me the issue with this med would have nothing to do with how one metabolizes meds...just saying). He asked me to text him tomorrow to tell him how it went and if I noticed any side effects. I just took 50MG a few minutes ago for the very first time. We shall see. Also, upon reading the prescription, it appears to be a two week, not a three week taper up.

One more question, I thought I read somewhere that not only did the doctor and pharmacist have to be registered to prescribe and fill this med but also that the patient had to sign something. I never signed anything. Is this true for any/all of you already taking the drug?

i was put on clozaril in 2011... the sedation was intense and it was so bad i peed my bed in my sleep bc i couldnt get up. i got off it cause the sedation never left. i also didnt sign anything when i was put on it. i cant remember how often they did blood work though.

Thank you! My husband especially and I are hoping for better results. My pdoc has great faith that this is going to be the difference I need. We shall see.

I'd be careful with the clonazepam. If you're addicted 2mg straight down to 1mg can be a big jump.

I hope the clorazil works out for you.

. How did it go?

I talked to my pdoc about it. He says it's a great drug if you can handle the hassle.

Good luck, cashart!

Maybe she still knocked out haha

I hope not. But she started on a huge dose compared to the usual routine.....and that sounds like it would have the potential to make you sleep for 3 days from one dose. Hope not!

I woke up like a drunkard: slurred speech and barely able to walk. My husband said I originally woke up 2 hours earlier than I normally wake and went in to wake my daughter for school. She apparently went back to sleep. That was on 50 MG. I'm not sure what I'll do if this doesn't change in the next two days when I move to 100 MG and have to take it in the morning. My first morning dose will be on Fri when I will be alone with my little one. I will probably need a caffiene injection.

LOL!

That.......doesn't sound fun. My secret hope is that I'll be able to convince my pdoc to let me take it all at night. She probably will because I am not good with AM meds but I'm sure the hospital will make me take it AM and PM to start.

I can't believe you are starting on 4x the usual starting dose. I can't believe you are awake at all!

Getting through the beginning is going to be rough
Hopefully you have someone that can help out for a while? What if this is your miracle drug but dealing with the initial effects and your life becomes too much? Wouldn't want you to give up on a potentially life changing thing! Good luck

Yes. In fact they just changed the clozapine/clozaril registry and prescription/blood lab requirements and more changes coming early next year from what I understand. I have a family member on this med for the last year. Started with a very slow taper-up (it can kill off your white blood cells and antibodies which is why the blood tests and caution), weekly blood tests for 6 months, bi-weekly for another 6 months and then monthly.

We also had some issues with the pharmacy prescribing klonapin -- they would not do it because of the possible interaction.

The clozaril had a sedatating effect each time the dosage was increased that took a while (days/weeks) to adjust too and still remains a bit as far as I can tell, it never completely goes away.