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Clozapine Monitoring - first two weeks?


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I have a question. How did you go on Clozapine? Were you monitored at home the first two weeks or in a hospital?

When clozapine was put forward as my best option going forward my treatment team said that ...

1. I would be put in an open ward to be safely monitored for any problems the first 2 weeks.

2. I would not have to worry about monitoring at home (even chuckled at my husband and assured him that wasn't done).

3. Was given a gigantic binder of information and told to think about it for a few weeks before deciding (that has never happened to me at all with any psych drug previous). I was told to familiarise myself with the side effects and make an informed decision.

So there you have it. Sure, sounds like they are careful when it comes to this drug, and I am told it is solely available in this country for schizophrenia and schizoaffective. 

This was the stance they had until last week. Suddenly, they are saying I am going to be staying at home for this (at home alone because my husband and mother in law will be away during the day). A nurse will come by once a day to take my vitals and such. The side effects are negligible and hardly ever happen, just like with any other drug I've taken. Nothing to worry about. Then why the intense build up?? Why a giant binder of information and weeks of contemplation and assurances that I would be safe in a hospital the first two weeks. This was never done at home... haha, you silly family worrying about taking on this burden! Oh... wait, we take that all back. Almost 100% safe, those dangerous side effects we drilled into you are no more common than getting cancer from aspartame (my nurse used that exact simile)... it's just like any other drug you've taken. Is it really? I'm so confused right now.

Experiences and thoughts would be appreciated.

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I had to be started on Clozapine in the hospital.  I was only there for 3 or 4 days.  By the time I was home I didn't have to monitor anything other than if I felt like I was having a bad side effect or something.

About getting the meds, I was only prescribed a week at a time. 

I had to get blood drawn (check for white cell count), then that information was sent to the "parent company."  When I went to pick the med, the pharmacist had to call the "parent company" to get the ok to dispense them.  It was a major PITA.  A few weeks later my WBC count dropped to about 0, and my pdoc had me stop taking it immediately (although I might have weaned down, but not for very long). 

All it did for me though (that I remember the most) was really sedate me, made me gain lots of weight, and messed up my sleep.  Even when I stopped taking it, the eating and sleep remained messed up.

I know though that there are people here on CB that it really works well for, so hopefully they will chime in and post. For me though I had a very bad experience with it.

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I'm on my second run of being on clozapine.  I've had nothing of the huge song and dance around it that CB members from other parts of the world seem to have experienced when starting it.  I am confused whenever I hear what a big deal is made of this drug elsewhere (I am in the southern hemisphere, fwiw).  This is the second pdoc who has prescribed it for me, and neither of the two was dramatic when they discussed putting me on it.  In fact, it's one of my current pdoc's favourite go-to drugs.  Apart from weekly blood tests for the first while, it was prescribed in the same way as any of my other meds.  I didn't have to go into hospital and from the start I have received 30 days' worth at a time. 

I'm currently on 150mg/day.  It helps shut my head up to let me sleep - in fact, the primary reason I started to take it again was going through a severe insomnia episode earlier in the year.  I have not noticed anything in particular with regard to my appetite or weight gain.   The main side effect that hits me is morning grogginess, but that's compounded by the seroquel XR I also take at night.  I get round that by giving myself an extra hour to get ready for work.

Of course I wonder if I (or my docs) are missing something when I read about how clozapine prescribing is approached elsewhere, but since I seem to be (mostly) functioning on it, I've decided just to trust that they're not doing anything heinously wrong.

Good luck!

 

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 I've had nothing of the huge song and dance around it that CB members from other parts of the world seem to have experienced when starting it.  I am confused whenever I hear what a big deal is made of this drug elsewhere (I am in the southern hemisphere, fwiw). 

Out of curiosity what do you mean by (in bold), "... had nothing of the huge song and dance around it that CB members from other parts of the world seem to have experienced  when starting it ...

 

 

FWIW I'm confused why there is no big deal made elsewhere/Southern hemisphere.  For me, I do not see it as dramatic.  It is just the way it is managed here.  Every place is different.

 

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I was started on Clozapine in the hospital. Once the decision to start it was made, the pdoc said I would only need to be there a few days after starting it, because she was so sure it would help immensely and I wouldn't need to be inpatient anymore. She had me go up a dose every day. But she didn't give me proper follow-up. I was supposed to go to something called "Day Hospital" to have the weekly blood work and therapy. We called them after I was discharged, and they said it was a long waiting list to get in, and they don't do the blood work. My outpatient pdoc wasn't registered with the company that reviews the blood work for the Clozapine, so she couldn't help either. I had to go back into inpatient, where they switched me to another AAP. 

Anyway, I wasn't monitored in the hospital when starting on it. They made it seem like it wasn't a big deal at all. I just kept going up in dose at home, and I felt like shit. 

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Melissa: your experiences and mine are at complete opposite ends of the pole when it comes to this med.  They contrast very sharply, which is why I used the wording I did.  I was also responding to the OP's description of how clozapine was first presented to them. I believe this is not the first time I've felt I needed to come in and report on how my usage of clozapine has been managed in comparison with how yours was, because it differs so much and I want to have it on record that it may not be that way for everyone. 

This is aside from also wanting to say that it has proven to be a good med for me, but you yourself do point out in your post that there are people on CB for whom it has worked where it didn't for you.

Perhaps we should just boil this down to being a prime example of "YMMV".  The difference in how it is administered is probably a simple case of my country and yours not subscribing to the same protocol with the prescription of clozapine.  Sometimes I think we can lose sight of the fact that CB has a global membership.

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Saintalto,

I was nearly put on clozapine by a covering pdoc. She said she'd take me off all meds I was on and just have me on the clozapine. She said, "why be on so many meds when 1 will do the job?"

She never mentioned needing to be IP for this. And wasn't going to put me back IP as I had just gotten out of the hospital. After I expressed my concern with going off all meds to just clozapine, she said she wouldn't put me on it because she wasn't my usual pdoc and that was that. Never saw her again. 

So I never gave it a fair shot because I was wary of ditching all other meds. But wanted to mention that that particular pdoc didn't think I needed to be IP when starting clozapine and going off all other meds. But she must have had a lot of experience with clozapine working for people if she was that confident about it. 

She was the boss of all the pdoc's at the county clinic too. Medical director that is. 

So that's my limited experience. I hope it works very well for you and that you don't have any issues with it. 

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How is it going?  Have you started taking the Clozapine?

 

Also, I want to make sure that the OP realized I wasn't talking about some "huge song and dance," as mentioned in the post below mine.  It may seem that it was a "huge song and dance" to other people, but it is just the way it was for me.  It wasn't any artificial "song and dance" that I was talking about, and I wasn't attacking anyone for telling the truth about what I experienced.  I experienced a ton of shit with the med and I wasn't about to lie about it.

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Also, I want to make sure that the OP realized I wasn't talking about some "huge song and dance," as mentioned in the post below mine.  It may seem that it was a "huge song and dance" to other people, but it is just the way it was for me.  It wasn't any artificial "song and dance" that I was talking about, and I wasn't attacking anyone for telling the truth about what I experienced.  I experienced a ton of shit with the med and I wasn't about to lie about it.

Seriously Melissa, let it go.  I explained myself and I thought we resolved this.  Both our experiences are valid.

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I hope it is okay if I post. I have no first hand experience.

I am in the US and I know someone prescribed it for bipolar. It works very well for her. 

I don't know how they start treatment here, but I would be taken aback by what they said. First it is a huge deal, than it is a smaller deal. 

A visiting nurse daily is something. More than other meds.

not sure if I have a point. I just feel for you.

i hate to mention this because it may be unrelated but I have seen treatment plans for different conditions change depending on what you can afford. Cost saving. But, maybe their protocol has changed. I don't know.

 

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8 hours ago, MiaB said:

Seriously Melissa, let it go.  I explained myself and I thought we resolved this.  Both our experiences are valid.

All I was doing was making sure the OP knew I wasn't saying something that wasn't true.  The post was not directed to you at all.

In all honesty, I had already let it go between you and me.  I Thought you knew that.  My post was just directed to the OP.

I've already let it go and I was fine with it.

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I have been on Clozapine for a couple of years.

I never had to do anything in-patient.  I had to get a weekly blood test for the first 6 months, every other week for 6 months, then once every 4 weeks from then on.  As was explained earlier, the lab sends the results to the pharmacy. Then the pharmacist calls the manufacturer who enters the appropriate numbers into a database and determines if they can fill your prescription. In addition to checking if your test results are out-of-range, they also check to see if they have dropped more than a point in range.  This has happened to me twice since I've been at 4 weeks.  Once I had to have another check up done a week later and that test was fine.  I have currently been back to weekly checks for the past 10 weeks. Hopefully I'll be back to the 4 weeks checks, soon.

It is really sedating for me, and although I sleep longer than before, I have found that when I wake up, I am much more functional that I was when I was taking Seroquel at night for sleep. I was also able to get off of the Seroquel and Trileptal that I was taking before I started this.

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For me I was very sleepy also, but only in the beginning.  When I woke up I had to reorient to my surroundings, and figure out what day it was, the time ,what I'd done before falling asleep.

One day I thought it was 7:30 AM, and that I had woken up later than I wanted to.  So went for a walk, only to find out it was 7:30 PM.  When I started for the walk it looked in the sky as if the sun was coming up real soon.  What was really happening was it was getting darker out instead. 

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4 hours ago, saintalto said:

Thank you everyone for your responses but I'm sorry I started a bit of an argument. I did take all this in and it has eased my mind about starting clozapine at home.

You didn't start anything.

i am wishing you the best with clozapine 

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6 hours ago, saintalto said:

Thank you everyone for your responses but I'm sorry I started a bit of an argument. I did take all this in and it has eased my mind about starting clozapine at home.

I'm sorry. You didn't start anything.  The point I was trying to make was that I wanted to make sure people understood that with all the success stories out there, that there was another side to it all as well.

I hope you find good luck with it!

 

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