Beyond Frustration – Clozapine Refill Issues

Beyond Frustration – Clozapine Refill Issues

One thing after another, it never seems to end. There is always something that needs fixing or needs to be completed. I had my weekly blood work done on Friday and I’ve been checking for the results a couple of times a day. Normally, it’s done and I get the results the same day or early the next morning. For some reason, this week and last week, it took longer for my results to come through, but they finally did this afternoon. Once I know that my lab results are in, I call my pharmacy to make sure they received a copy. I usually spend the first five minutes of the phone call with them telling me they didn’t receive a copy until they finally look in their fax machine to see it sitting there.

They generally talk down to me, as if I don’t know what I’m doing. Today, the pharmacist kept telling me that they need to receive my lab results every week in order to fill the prescription. If only she would have stopped talking, she would have realized that I’m well aware of that and it was even the reason for my phone call. Shortly after hanging up with the pharmacist, I received a phone call from her. She called to tell me that my white blood cell count was high and she was concerned about filling the script. I explained to her that my count has decreased, improved, since last week and that my only current side effect is fatigue/low energy, but it is almost gone. I told her that I would have my psychiatrist call her. Then, she informed me that she would fill the script, but starting next month any time my lab results are off, they would be required to send my results to a central database location. The pharmacist would no longer be able to decide if it is okay to fill the script or not, someone at the central database would have to decide.

Now, I’m sitting here thinking that I could be taken off Clozapine any time if my blood results are off. I’m basically living week to week, never knowing if I’ll be able to get my next prescription of Clozapine filled. It’s adding on so much anxiety to an already stressful life. My psychiatrist says that they need to be concerned about a low white blood cell count, not a high count; however, I have so many more questions.

  • If at some point the pharmacy, or central database, won’t fill my script, do I just stop the medication immediately or am I supposed to titrate down off the medicine?
  • What side effects can I expect from going off Clozapine?
  • What levels of a WBC (white blood cell count) are good, and which are bad?
  • Is it bad that my eosinophils count is very high? At what level does that count make a difference?
  • If I have to go off the Clozapine, what medication would replace it?  I’m no longer on Seroquel or any other antipsychotic.
  • How long would it take for a new medication to start working?
  • How likely am I to have a major episode if I go Clozapine?

Once I know the answers to these questions, I will let everyone know. Hopefully, I won’t have to worry about any of this. Hopefully, my next blood test results will be back to normal. Until then, I am just going to stress over it all.

Clozapine (Clozaril) Labs & Registration

Clozapine (Clozaril) Labs & Registration

Friday was the beginning of the Clozaril rechallenge (generic is Clozapine) process. I had my blood work done; there was some difficulty getting the lab to send the results to my doctor and my pharmacy. It was partially my fault, I did give them the wrong fax number for the pharmacy, but it took 4 phone calls to try to fix the mistake. Even when they finally said the problem was resolved, it turns out that it wasn’t; the pharmacy never received the results. Luckily, I ended up talking to one of the nicest and most caring pharmacists since my father and aunt. He was happy to call the lab himself and request my results so that I could get my prescription. Once he got my lab results, he realized that I had to be registered again in the Clozapine Database because I hadn’t taken the medication since this past summer; all patients need to be registered by both their pharmacist and their doctor. My pharmacist told me he would call me once the registration is complete so I can get my prescription filled. There aren’t many pharmacists that are as polite and happy to help as he was.

Sometime tomorrow I should receive a phone call from the pharmacy letting me know I can bring in my prescription. I admit that I am nervous. I’m not nervous that I will end up with some of the horrible side effects of Clozapine such as neutropenia, which is an abnormally low level of white blood cells, making the patient susceptible to infections. This is why there are so many protocols with Clozapine. I feel like I should be nervous about it, but I’m not. What I am nervous about is the fact that I don’t know if this will work or not. I’m trying to remain positive; I keep saying that this time it will work, I won’t get a fever, I won’t have to go to the hospital, and there won’t be any problems. I’ve been so nervous about this rechallenge, my anxiety level has been much higher than normal; I’m anxious even sitting at home in my comfort zone.

Is this weird that I’m more concerned the medication won’t work than I am concerned that the med will cause serious side effects? I think it’s just because I don’t know how much longer I can live like this. I have had suicidal ideations for more than 5 months. My hallucinations keep getting worse making the paranoia intolerable. And in my mind, the worst part of it all is that I won’t do anything about it. I can’t take my own life, no matter how much I think about it. I know that technically that’s a good thing, but if you lived in my mind for even a day, you would understand. Every day I put a smile on my face and do my best to pretend everything is okay, but inside I’m a disaster. I want to live and be happy to be alive. I need this medication to be the answer. I’ve taken pretty much every other medication and I still do ECTs. I currently take 7 other psychiatric medications, 2 additional meds to treat side effects, and 3 other medications for physical conditions. I just need to catch a break, I’m hoping that will happen with this Clozapine rechallenge. We’re all about to find out.