Pdoc. Miracle or Clozaril.

I saw my pdoc today. We've had some confusion in communication that resulted in some tears but it is worked out now I think. I hope.

When I got my lithium levels drawn and then later when I hadn't heard I sent her emails asking if we could try raising my dose a bit just to be sure it was worthless. Somehow those emails got lost. And I'm supposed to call when I send something important and I just didn't. So I could have tried this a few weeks ago but ultimately it doesn't really change anything after we talked more. I think her plan before we started talking was another month of lithium and I am absolutely certain that last month we agreed that I could do one more month and then I was done trying so hard. So I cried when I thought we were waiting a month. But we aren't.

My prior understanding was that I would start going off Seroquel at home, go IP when I couldn't handle it and start Clozaril there while getting off the rest of the Seroquel. Today I had 2 options: going on Clozaril very slowly while coming down from Seroquel very slowly and possibly needing the hospital anyway but potentially getting through at home or I could choose to go IP, know I was going to feel absolutely horrible for a few days while I was pulled of Seroquel rapidly and then they will start the Clozaril a little faster. That's what I chose. I don't want to spend 5 weeks tapering and still wind up IP after I've put up with it for 3 or 4 weeks.

There isn't a dr on the unit I usually go to right now b/c he quit so the other drs are taking turns covering. My pdoc sent an email to all 5 of them asking how they want to handle the situation. I don't know if I'll hear from her again this week or not and she's off next but the week after I'll more than likely be calling to tell her I feel horrible still. And then she'll tell me the plan.

But I will probably be going IP somewhere between Jan. 4-11.

Unless a slightly higher but still minuscule dose of lithium works wonders.

I didn't get much sleep and the entire drive was rainy and there were 2 accidents so I had 6.5 hours of driving today plus an hour with my therapist and 1.5 hours with my pdoc. I am so tired I'm really emotional but I am so glad that one thing or another is going to work soon (assuming Clozaril helps me).

IP sounds like the way to go. Other than the blood draw hassles, I hear great things about Clozaril. Sounds like you made a good choice. Please keep us posted - we're rooting for you!

moogs

I hope the Clozaril works for you. I was IP too when I started it.

Feel better soon!

Yoda-How long did it take to feel it working? I don't know if you were coming off another AP to go on it (I am getting the impression Seroquel is the only one with the huge interaction and others have a lesser interaction). I know that since my current diagnosis is severe mixed that I'm going to be all over the place when they take Seroquel away because she said I would be anyway (and hopefully they'll boost it with something for those few worst days; IP has the advantage of offering me drugs like Haldol that I can't try outpatient) and she's recommending going up somewhat slowly because my history of drug reactions is legendary but she didn't say how long it will take to help some (probably since she won't control the upward taper).

What have the worst side effects been for you? Her goal is to keep me at 200 mg or lower and let the other meds I'm on continue boosting things a little. I'm not sure I've ever done what we expected though so that goal is somewhat random. I know she wants it as low as possible to avoid side effects and because I have had so many rare side effects it is hard to not worry that I'll be the rare person with ANC issues.

I'm glad to be doing this IP. I have a feeling doing it at home would have become a disaster, something like my not realizing how bad I was and my mom having to get my therapist to get me to go in or something. I feel safer being IP.

I just wish it were tomorrow. I really can use a couple of weeks to finish something with my therapist and my pdoc is away next week so nothing would happen then regardless but I feel like I've waited so long and now that it is decided (unless I get the lithium miracle of the decade) I just want to do it. Or run away from it. one or the other .

I'm happy you have a more definite plan now. I really hope the clorazil works out for you. I understand being afraid. I always get scared weaning off of meds or starting new ones. Everything has always turned out okay in the end though. Hoping you'll be feeling better soon! Big hugs!

This med is really scary because if it doesn't work I don't know what they would do. ECT as a desperate shot in the dark I think. And I know my pdoc said if this doesn't work we mess with my AD (another hospitalization to rapid withdraw the Emsam/start the new drug without 2 full weeks without an AD (which would put me in the hospital anyway I'm suer). But as far as APs go this is about the end of the line.

I've been there with ADs and it worked.I keep reminding myself of that. And now there are new choices to try if the AD needs to be changed.

I just want to do it and start moving on (and feeling better I hope).

Wow, you have a lot going on! I do hope it works out for you.

The clozaril has helped in our case significantly. The thing is that it can cause problems with immune systems - white blood cells and antibodies and you much have constant blood tests to make sure all is okay. You also have to be registered in the Clozaril registry and blood tests filed in order for meds to be issued. This part is something of a pain but that's just the way it is.

The reason for slowly tapering up on the dosage is that the adverse effects on the immune system must be monitored with blood tests to make sure you are tolerating it.
I suspect it is best to do this inpatient and can't imagine doing it on an outpatient basis, but I guess it depends on the severity of your symptoms.

There is lot of information at the Clozapine registry - https://www.clozapinerems.com/CpmgClozapineUI/home.u

and at the various drug sites online.

They have made significant changes to the requirements during the past year that we have been using it and I understand new changes will go into affect next year that will require pdoc review of the blood test results (not just the pharmacist) in order to fill the meds.

as far as the 'how soon' -- that I think is very dependent on the individual and the 'ramp-up' -- it seems the initial results can happen soon, but full effect (according to others/reports/experience) is that it takes weeks (perhaps even months) to build to full effect.

As far as the side-effects it does seems to cause drowsiness and weight gain.