Clozaril day 1?

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.

That's wonderful news for your loved one! I am hoping for the same results!

I thought so but I was beginning to think my pdoc was being extra-ordinarily cautious (which we have to be with me and my history of drug reactions with this stuff).

This is only me, but I would not continue to take this drug with a dr. who doesn't know what he is doing, especially backed up by a pharmacy that doesn't know what IT is doing. That's too scary. I think I would start wondering if my pdoc was actually looking at my labs or if the pharmacy were looking at what they are supposed to look at before dispensing.

I honestly have no idea how I'll work this with a pharmacy here. It's so rural I'm expecting to have trouble. But once they mess up something like this I would have a hard time going back.

Just me though.

How are you feeling today? Did you take the AM dose or decide to wait?

I know . Just pray that my husband finds a job that actually has benfits so we can get off of medicaid and can get a decent doctor. I'm seriously conflicted.

I am praying. Are you close to a big hospital that might be doing a clinical trial? That's free care for the course of the study (I did it when I had a $10,000 mental health deductible and also because I couldn't find a reasonable pdoc in the city where I lived). The place I did it had a mood disorders clinic and they did/do a lot of research. My hospital does some as well but this place (down the street) does a lot of med trials. I have told my pdoc I'm happy to participate in any research but drug trials; at this point I think I need to stay away from meds that aren't fully tested but when I was first diagnosed it was the best thing I could have done. Unfortunately that's the only suggestion I have for getting a dr. When I was totally uninsured I got free care from the hospital where my pdoc is but I don't think many places have that kind of program, especially now that insurance is more wide-spread. I'm taking a big chance with them though; when I go IP next month that will make it so that I owe enough they're going to want a big chunk of my income and I'm going to have to apply for an exemption to get my fees reduced. Even though Medicaid will pick up some of it the medicare deductible is big and I'm still paying it from August and a few hundred dollars from my ankle surgery along with my monthly pdoc visits add to that bill and make getting ahead on it nearly impossible. Ugh.

I'm glad i have medicare but there just isn't yet a good, affordable way to be mentally ill as far as I can tell.

I had a bad day but a good evening. I did go ahead on that second dose (so now I'm at 100MG) and no one ended up coming over to help. My mom and husband kept calling me, each time telling me I sound like I'm drunk or on heroine. I know you all advised against it but I drank another cup of coffee in the late afternoon and it did wake me up enough to function. However, even after that cup of coffee, when my daughter (8) came home from school she asked me why I looked and talked like I was going to die. She was serious. It was terrible.

That evening, we went out to look at Christmas lights but my kiddos weren't stoked about it so we got some pizza pizzas and brought them home. Then, I went out to get balloons and party favors for my daughter's 8th birthday party tomorrow.

It seems better than I've imagined. Of course I have no idea how I'll be feeling without Seroquel (or klonopin?) in my body when I start and my pdoc told me I won't feel good until after I'm home from the hospital, but I was afraid it would be like going on some meds I've started where I was completely out for 2-3 days, no matter what I wanted or tried to do. Sounds almost that bad but not quite. And I'll be going on more slowly so maybe I'll miss some of the "dead" part. Hard to know; going off Seroquel seems like it is going to mess me up in some bad ways. Can't believe is it 2-3 weeks off (and that you are only 2-3 weeks ahead of me when the decision was made so long ago!).

What happened with the pdoc at your therapists' office?

Thans for the prayers; they are greatly appreciated!

As for the doctor in my therapist's office, she is just too expensive for the moment. She does not accept insurance and the initial visit will not be on a sliding scale. It's $225. She will do the monthly visits on a sliding scale (it's usually $90, I'm not sure how much they'd come down). Since my husband is jobless as of the end of this year we cannot make any major changes financially. Even if I asked my mom to cover the initial visit (she probably will), the monthly cost, along with the newly aquired $30 per week for therapy, would just be too uncertain.

Hang in there.

Today was the second day on 100 MG. I waited until I was finished with getting the house ready for my daughter's birthday party/sleepover to take the Clozaril (so around 4) so I'll have to take my meds later than usual (10 or 11) this evening.Once again I experienced difficult side effects. I had slured speech, was unbalanced, and was worring everyone around me. My best friend was over; she told me I am not able to drive until all of this sedation has passed. She's right and I hope it ends soon.

Tonight my husband sent my pdoc a come to Jesus text. He wasn't rude, he just laid out the facts and expects to get results. He knew I didn't have the gall to do it even if it was needed. We shall see as far as the results.