Clozaril day 1?

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.

We have gone through various dosage allocations, first mostly at night, but now have it spread out to three times - morning, midday and bedtime. That seems to be working. We are pretty much at the maximum dosage.

Do you think your pdoc would be okay with you staying on your current dose longer, until you get more used to it? Maybe a week or something?

How do I approach this? Any suggestions (from anyone)? Do I contact the pharmacist or do I contact my doctor?

Here is what the doctor from webmd had to say when I asked him about it a while ago:

Dear Sarah,
In order to start clozapine, patients have to get formally registered by their doctors in the Clozapine Risk Evaluation and Mitigation Strategy (REMS) program (see https://www.clozapinerems.com/CpmgClozapineUI/home.u). A specific pharmacy needs to then be designated by your doctor that will receive from him the weekly white blood cell tests (actually, what's called the absolute neurotrophil count, or ANC) in order for them to be able to dispense clozapine 7 days at a time. Clozapine is usually started at 12.5 or 25 mg/day and then increased every 1-2 days by 25 mg to a target range of about 300-450 mg/day, per the manufacturer (see Clozapine - FDA prescribing information, side effects and uses). 100 mg is rather a high starting dose.and one would need to be extra cautious about dizziness when standing (called orthostatic hypotension) and sedation.
Dr. G.

Here is a little further in the discussion:

Me: Well, I do feel better about all of this. He is on the registry already and advised me that the pharmacy will fill the prescription once I have filled the blood work and signed the paperwork. He is going to start me on 50 MG which is, according to him, admittedly high. He says my body requires higher doses of medications and he feels confident that this will not over medicate me. We are going to move up 50MG every 3 days until we hit the (hopeful) target of 300MG. Does this sound reasonable to you as well? Thanks again.

Dr G: Dear Sarah, Yes, reasonable. Watch for sedation and orthostatic hypotension when standing. Dr G

I have also asked him the following questions and am waiting for a reply:

Thanks Dr G! I have now started this med. I started on 50MG and will be on that until Fri when I start 100MG.

Everything I have read suggests that weekly blood tests are a requirement. However, my doctor is prescribing them bi-weekly (at least he was until I told him I would be more comfortable with weekly tests and he honored that). Is this incorrect? Also, the pharmacy filled a 28 day supply of the meds. Is this normal? Are both my doctor and pharmacist incorrect in their prescriptions or am I reading the wrong information? Thanks again!

Has you loved one noticed a considerable change since beginning the drug?

I'm not sure but I was talking to my mom and she suggested we either find someone to stay with me on Fri until I know how I will react or we wait until Sat to start the new dose. I know that I will have to LOAD down on coffee for a while until I'm used to it. I know this is disgusting but this morning I woke up with a ton of slobber. My husband kept dragging me off of the couch and I kept laying back down just moments later. I swear I could have fallen asleep while standing.

While you are transitioning onto this drug your family should act as if you are in the hospital and see to your kids so you can get used the the heavy sedation at the beginning and with each increase....the sedative affects should wear off after a week or tow but until then you shouldn't be allowed to ne with any kids....sorry but your family is really not being enlightened about the initial effects of this drug. I'm not saying you should quit or give up just that they need to put you and especially your kids first right now.

Oh...your mom is concerned about that...good thinking on her part...as for loading up on caffeine that seems counter productive.

I can't imagine starting something really sedating and going up so quickly. I remember when I was working that I always timed increases to Friday nights so I had a few days to recover and it was always really hard still for the first several days of the week. I can't imagine adding sedation to sedation (I know that clozaril goes up pretty fast but starting so much lower than you did. By the time I reach 50 I'll probably have been on it several days or more.) I've read the drool thing is an unpleasant side effect. I did read that atropine drops under the tongue can help.

Thanks for this. This morning has been better. I drank two cups of coffee and a caffinated soda and felt much more awake. I even went out and ran some errands. Right now however, as I have sat down to respond to these posts, I again feel like I'm about to fall asleep. I mentioned earlier that my mom wanted either someone with me on Fri when I start the morning dose or for me to wait until Sat to increase the drug. Hopefully this will help.

Geodon did the same thing to me but at the time I was up feeding my newborn multiple times a night and could not be falling over while caring for her so I had to stop the drug.

Yep, I would discuss it with both the doctor and the pharmacist because they both have to be involved.

Yes. It was the drug that made a difference after several others did not. Like I said though the 'tiredness' is still there, but manageable in light of the relief from other symptoms.

Yes, unfortunately that slobbery over-active saliva-glands is one of the side effects.

Yep, I would try to just have the usual morning coffee.

Here is the most recent Q and A between the webmd doctor and me. Not only is my doctor making errors, but the pharmacist is also making errors. I have written another follow up question and I will let you know when I hear back from him.

ME--Thanks Dr G! I have now started this med. I started on 50MG and will be on that until Fri when I start 100MG.

Everything I have read suggests that weekly blood tests are a requirement. However, my doctor is prescribing them bi-weekly. Is this incorrect (at least he was until I told him I would be more comfortable with weekly tests and he honored that)? Also, the pharmacy filled a 28 day supply of the meds. Is this normal? Are both my doctor and pharmacist incorrect in their prescriptions or am I reading the wrong information? Thanks again!

Dr. G--Dear Sarah,
It's not up to the doctor to decide how often the white blood cell counts gets measured; it's mandated by a national registry called the REMS (Risk Evaluation Mitigation Strategy -- see:
https://www.clozapinerems.com/CpmgClozapineUI/faqs.u). The schedule is determined the national REMS program in order to monitor the (rare) risk for immunosuppression, which could be life-threatening if it goes undetected -- weekly for the first 6 months, then every 2 weeks for 6 months, then monthly. Pharmacies can only dispense enough drug until the next blood draw (the REMS trademarked logo says "no blood, no drug"). These rules are set in stone.
Dr. G.