Pdoc wants me on clozaril

I think that's what my new dr will want, it scares me too.

Thing is I’ve tried everything but cobenfy and ECT. I’d rather try ECT. Oh my mom would just keel over and DIE if I told her I was doing ECT!!!

I don't tell my parents about my treatment because they acted like I was stealing when I had a daily nurse.

I was on Clozapine. It didn't work for me because even tiny doses (25 mg) caused a deep, immobilizing depression. I had to switch to Zyprexa.

I didn't need to go to a crisis residential center. My inpatient psychiatrist prescribed and then the outpatient psychiatrist continued. The only thing I had to do was get regular blood tests and present them to the pharmacy before the pharmacy would fill the prescription. For that reason, the pharmacy would only give me small quantities of this drug. Blood tests are needed because Clozapine can cause a dangerous drop in WBC. @BeyondtheRainbow has been on Clozapine with success and AFAIK, didn't go to a crisis residential center to get on it. Tagging her for more info for you, Moose.

When I took it I didn’t have to titrate up in any residential crisis center. I just had to do blood work first and the then weekly required bloodwork that they don’t make you do anymore. It worked really well but made me so sleepy and so hungry. I gained mega weight. One of few antipsychotics to not give me akathisia which was great.

Now she wants me on cobenfy for a week while they find me a bed at a place so they can titrate me up on the clozaril! Jeebus! My arm hurts worse now! Wtf??? Now I have to go BACK out and get the Cobenfy! I hope they can figure out how to fix my arm Friday!

It is known for very low EPS risk, yes.

I didn't know about the termination of blood monitoring. apparently, this was only done in the US, in Feb of last year, The FDA Has Ended Required Blood Monitoring for Clozapine Use—Will This Impact the Management of Parkinson'''s Disease Psychosis? - PMC

Hey @Moose72 . I've been on clozaril for 10 years and honestly love it. It has side effects of course but I mostly don't care because I feel good on it. Weight gain is the only real problem I have. Also overactive bladder but it's hard to know the cause of that. Until recently I did have trouble with nighttime bedwetting and heavy drooling at night. Those are pretty standard with clozapine but a normal blood level has eliminated those for the most part.

I did go inpatient to start it but I did that by my choice. I was told I could either taper down the very high dose (1500 mg) of Seroquel I was on and then start it or I could go IP and taper down on the Seroquel while going up on Clozapine. I'm glad I did it that way. It was very hard but it would have been worse to not have any med at therapeutic levels. Honestly I probably would have ended up IP anyway because I was a wreck going on but I liked feeling I was in control.

At least where I went on it they have a planned pattern on starting clozaril and increasing the dose. I think I started on 25 mg at night and then twice a day and then the dose was increased but I don't remember exactly now, just that the plan for increasing it was in my orders from the first day. It took about 2 weeks to get to the target dose.

I think that the recommendation is to do labs weekly for 6 months and then gradually space it apart until about 18 months. After that the recommendations seem to vary because the risk of neutropenia levels out to not much. I have a CBC at least twice a year plus an additional if there is any reason to be concerned. I do get clozaril levels drawn about every 4 months. That's not standard but I need them because for some reason my levels like to drift upward. I'm hoping that I'm at a tolerable dose now because my side effects are gone and I feel good except for anxiety. I have to remember to ask about a level next time I see my pdoc.

If you have any questions you are welcome to ask.

Uh. I don’t want either med now. I’ll just deal with the crying.

Wait, why? Was what I said scary? It wasn't intended to be. I love clozaril. There are newer meds I've not tried and I have no interest in trying them because this works so well. I was trying to be honest but there's not one thing I have experienced that would make me want to not take it. I'm sorry if that didn't come across.

Uh. I don’t want either med now. I’ll just deal with the crying.

My daughter is getting married in 6 weeks and I don’t want a repeat of my dad’s service week where I had horrid side effects to a new psych med. That’s why.

�� I'm sorry. Mental illness sucks.

If crying is your issue what about an AD? Maybe a low dose would help you without side effects?

When did they plan on starting it? If the timing is the issue, could you start it soon enough that if bad side effects show up you can stop before the wedding, or is it late enough that you could just push it off until after?

The wedding is in 6 weeks. Too close to be doing all the titrating etc. I’ve resolved the issue that was making me cry. I need to be lucid for my daughter’s wedding. I have 3 kids and this is my first to get married. I was incapacitated at my dad’s wake 3 years ago by med side effects- literally all I could do was lay down for a week! We are flying hours away where I won’t have access to help should the new meds give me issues. I already told the pharmacist this. Pdoc is gone with a family emergency and now I’ve got to face my new T Saturday about this and his wanting me to get a job. I don’t need a job. I just need to set better boundaries with people!

For you to get a job? Haven't you been on disability for years?

Yup! Because I can’t work! Duh 😂 so while I’m putting my foot down with everybody, why quit at my therapist?

Right. You have a treatment-resistant disorder, are running out of medication options, experience breakthrough symptoms including psychosis, and... the suggestion to get a job??

Thank you! I got that from my Pdoc AND my new therapist which doesn’t show me how right they are but that they’ve obviously been talking to each other!

I put my foot down and people think I’m manic! Ha! No I’m not. I’m just sticking up for myself.

Bump: In a pm, one of the mods said to me “you can’t work with all the psychosis you’ve had lately!” EXactly!

Bump: I need some water. Don’t feel good. Arm still hurts. I have an appointment with an orthopedic surgeon Friday because my arm is injured and it’s apparently not obviously broken. I hope they’ll redo an X-ray. Something is seriously wrong with my arm! Nobody will take me seriously that it’s damaged seriously and I need another set of images!

Bump: Uh maybe it’s me? I’ve been pushy, annoying, frustrating, anger-inducing, asked if I were manic- denied it!- refused new medications, told to stop, asked why I can’t stop,…. But I’d do ECT, just nobody’s suggested it! Now granted I refused new meds as I don’t want side effects while I’m out of town at my daughter’s wedding because of a horrible experience 3 years ago with side effects from a new med. But I don’t have time to do ECT- the wedding is in 6 weeks!

What have I done??

Bump: Bump: Bump: My arm is hurting so bad that it’s hardly usable! I see the orthopedic dr tomorrow. I called and the nurse said the dr may want to re-x-ray my arm and or do an MRI! Let’s hope so! I can’t even explain how bad it hurts except this is the worst since it started hurting me!

I saw the orthopedist. All I can take for pain is narcotics as Tylenol May as well be m&ms. But I’m getting a shot that I hope should help but I’ve gotta call and set that up. Nobody will prescribe narcotics of course. However, the dr did suggest gabapentin which my Pdoc already has me on like 1800. But if it would help I’ll take more! But my Pdoc prescribed it and she’s away on a family emergency indefinitely!

I contacted the psych office. They sent an email to Pdoc but they said I might not hear back till Monday.

They need to do an MRI and then progress from there. No since repeating another x-ray if it showed them nothing. I know that kind of pain and it's debilitating. When I had a car accident that totaled my car and bruised my ribs the ER doctor prescribed 3-Advil and 2-Tylenol 500mg to be taken together and believe it or not it worked. I only took it once a day to get me through work but if I'm remembering correctly you can't take Advil. I'm so sorry @moose. You're going through a lot right now. Do you think a sling for your arm would help or applying some heat or ice to numb the pain?

I’ve used heat and ice and a sling. It’s almost 4:15 am. They did more thorough X-rays and diagnosed me that way. Radial tunnel syndrome. I need an injection. It all depends whether I have rebound covid or not.

I was thinking ice too, especially since you said it was swollen (I don’t know if it still is but when you fell on it at least). RICE protocol, but I guess the compression bit might not be a good idea for nerve stuff though. If you know where the angry nerve is and you can get at it in a way with tape that actually gives the nerve some extra space to decompress though like (I forget who I think it was in your other thread) was getting at mentioned. If you have a good sense with your body you can figure this out with your other hand and just use what feels good with your hand and recreate it more semi-permanently with the tape. Or better yet have a professional help you figure it out.