Tag: Blood Test Results

Clozapine Side Effects

Clozapine Side Effects

Today marks 6 weeks that I have been on Clozapine. My psychiatrist has been increasing the dose slowly. I have only been at my current dose of 200 mg a night for 2 weeks. This is the dose that my psychiatrist wants me on until we get the results of my Clozapine level from this upcoming blood work. Things were going just fine, until the past several days. There’s always some sort of problem with me and medications, it can never simply work.

One thing I noticed is that I’m starting to slur my words and sometimes I just have a hard time saying certain words, usually words that have several ‘s’ sounds strung together in a row. It doesn’t happen often, but when it does, it’s very frustrating. I feel like a little kid again with the speech impediment I had until I reached 3rd grade. I first noticed it happening about 3 or 4 days after increasing my dose to 200 mg. My initial thought was that it could be due to the Valium or Percocet. I paid close attention making sure that the slurred speech was still occurring even when I had not taken any Valium or Percocet.

Over the past few days, I noticed another side effect, drooling. It only happens when I’m sleeping, but it gets so bad that my pillow is soaked. Sorry, I know it’s gross, but it’s been happening for about 4 days now. I tend to wake up in the middle of the night and then I have nowhere to lay my head down when I try to go back to sleep. I did some research, and it turns out that drooling is a regular side effect of Clozapine. The slurred speech is also a known side effect, but it’s not very common. I wish I could fix the fact that I tend to get so many side effects from medications. I wonder if it’s because of my Ashkenazi genes.

I told my psychiatrist about these side effects. He said that we can discuss options regarding the drooling the next time I see him, which is on Wednesday. That sounds promising, at least there are options. However, he said that if the slurred speech continues or increases, then I would most likely have to reduce or get off the Clozapine. I’m not happy with that option. There’s nothing I can do about it now. If I do end up having to get off the Clozapine, then I’m sure there is a very good reason for it. Now, I just wait and see…

Challenges Show Us What We’re Made Of

Challenges Show Us What We’re Made Of

I’ve heard it said many times before, ‘Challenges aren’t there to stop us; they’re there to show us what we’re made of.’ If that’s true, then I’m made of medications. It’s my daily medications and my as needed meds (such as Valium) that allow me to face my challenges. Okay, maybe I’m being a little dramatic, but I honestly don’t think I would be able to do anything without my meds. I can do a lot without Valium; it’s just there in case I need it. While on vacation, I have needed it more, but there have been times this past week when I did things without taking any. I’m going out with my mom and grandma this afternoon for mother’s day and I’m going to do it without taking any Valium, or at least that’s the plan. I can do it, I can do it. I tell myself over and over and eventually it helps. Everyone faces challenges on a daily basis, big and small. Even if I have to take daily medications and some other medications as needed to get through these challenges, at least I’m getting through them. At least I give it a try.

One challenge I’m dealing with right now is getting my weekly blood test results over to the pharmacy so I can get my prescription for Clozapine. I had my blood drawn at the local hospital and then I was told that they could not send my results to the pharmacy even though my psychiatrist requested it on the lab order, he gave them the pharmacy fax number and everything. All labs are closed on Sundays where I am, even the one in the hospital. So tomorrow morning, I have to call the hospital lab and Quest labs and explain the entire situation to them. Hopefully they will have my results and will fax it over to my pharmacy. If not, then I’m going to have to go to the hospital to talk to someone in person. The hospital is 40 minutes away. If that doesn’t work, then I don’t know what I’m going to do, but I will find a way to keep trying. There has to be a solution.

This is a huge challenge for me. I’m extremely uncomfortable talking to people. My anxiety increases, I start rocking back and forth, I lose my words, my heart rate increases, and I start shaking. Maybe no one else notices it, but I feel exposed. I feel as if everyone in the world can see that I can’t even ask people questions. I’m getting a little better at it, but it’s still terrifying to me. Sometimes, I write down my questions in case I lose my focus due to the anxiety. That way, no matter what, I can get my questions answered. I need to at least try to do it. The times that I try and it works out, I feel so proud of myself. It’s a huge accomplishment. I do my best not to let my challenges stop me; I try to find my way around them, one thing at a time.

My Lab Results Finally Improved

My Lab Results Finally Improved

For the past several weeks, my blood work results have been getting worse. My white blood cell (WBC) count, eosinophils, and absolute eosinophil have all been high and increasing every week. My WBC should be somewhere between 4 and 11 k/mm3, instead, it got as high as 13.6 k/mm3. My eosinophils should be between 0 and 7%, but it maxed out at 26%. My absolute eosinophil should be in the range of 0 and 0.7 k/uL, but my got to be as high as 2.9 k/uL.

I don’t really know what these levels mean, except that it makes it very difficult for me to get my Clozapine prescription filled every week. My psychiatrist and my pharmacist get copies of my blood work results every week, and every week my pharmacist questions whether or not to fill my prescription. It becomes a huge deal and I usually have to have my psychiatrist call my pharmacy to tell them it is okay to fill my prescription. It’s never an easy task, and starting next month, it’s about to get even more difficult. My pharmacist told me there are new protocols being put in place starting in May. If blood work results are off, like they have been every week, then they have to be sent to the central Clozapine database. The database will decide if the prescription can be filled instead of the pharmacists and doctors making the decision.

Luckily, I think all of these problems might be coming to an end for me, hopefully. For the first time in a month, my levels are finally going back to normal. It might take a little while to completely return to normal, but at least it’s headed in the right direction. My WBC is within normal limits at 9.7 k/mm3. My eosinophils are down to 17% and my absolute eosinophil is down to 1.7 k/uL. Those are all huge improvements for me; I’m hoping my pharmacist will see this and fill my prescription without question.

I have been living week to week for the past month, never knowing if I’m going to be able to stay on this medication. Every week, I wait for blood work results and then wait to find out if my prescription can be filled. My bipolar disorder already causes me not to have control over my own life. The Clozapine blood work, test results, and weekly prescription fills have allowed me to have even less control than I normally have. I’m hoping that since my blood work results are finally improving, I won’t have to keep worrying about whether or not I can get my prescription every week. I am concerned about what will happen when he increases my dosage again, but I can only worry about some many things at one time. I don’t want to add this to my long list of worries, especially since it is also something I have no control over.

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 Rechallenge – Day 16 Problems Arise

Clozapine Rechallenge – Day 16 Problems Arise

So apparently I have to go to the doctor today. It was either that or the ER, and luckily my PCP’s office had an opening. I was shocked. My psychiatrist was concerned about my most recent blood work, which took 3 times as long to complete as normal. My psychiatrist wants me to be checked for Clozapine-induced myocarditis. His reasons are because of my recent symptoms (which are now gone) such as shortness of breath, fatigue, chest and throat pressure, and eosinophilia (this is his concern from my blood work); as well as my previous reaction to Clozapine the first time I tried it, which was a high fever; and of course my genetics. When he refers to my genetics he is talking about my Ashkenazi genes.

I have an appointment in less than an hour and I’m ready to go. I’ve printed out my last 3 weeks worth of blood work and my psychiatrist’s notes. Hopefully nothing is really wrong; I’m sure it’s all fine. However, my stomach is killing me right now, probably from the anxiety.

Update:  I went to the doctor and I’m not even sure that she really listened to me. I read the notes after the appointment was over, and half of them were wrong. It was extremely frustrating. Either way, they did more blood work and referred me to my cardiologist for an ultrasound. I asked if they could call to make the appointment, that way I could get in sooner, but they said they couldn’t do that. Then when I called the cardiologist myself, they said they don’t have my referral and can’t make the appointment until they have it. Now, I’m even more frustrated. My psychiatrist said I can wait on the ultrasound; I don’t have to go to the ER today, which is the first good news I’ve heard. I really am pretty sure everything is fine, I think it’s just a precaution. Although, the likelihood that I will be able to stay on this medication is decreasing. I’m doing everything I can to be able to continue taking the  Clozapine, I’m just not sure if that’s enough.

Clozapine Rechallenge – Day 13

Clozapine Rechallenge – Day 13

I’m almost at the 2 week mark, which is where it all fell apart for me last time. However, this time, I’m doing so much better. I woke up this morning with no side effects; I’m feeling better and better every day. It’s amazing that I feel okay. No muscle soreness, no chest or throat pressure, no dizziness, no unsteadiness, and no fever. I am gaining weight, which can be a side effect of Clozapine. However, I was already gaining weight before I started it, so I don’t think that the weight gain has anything to do with the medication. I did get tired yesterday after running a couple errands and I ended up falling asleep on the couch for about 30 minutes total.

I stayed at 100mg again last night. I’m waiting for my blood work results to come in so I can get my next prescription. My psychiatrist wants me to have my blood pressure and pulse taken the next time I’m at the pharmacy. I will do my best to remember that when I’m there.

Clozapine Rechallenge – Day 6

Clozapine Rechallenge – Day 6

My psychiatrist is having stay at 75mg for a bit because of the side effects I’ve been having. Last night I only woke up once, at 3:00am, and then I was able to go back to sleep without a problem. That was amazing! When I woke up this morning, I didn’t have any of the side effects that I’ve been having previously.

I actually feel pretty good, except when I breathe deep, my chest hurts a little. I don’t think it’s anything. I got my blood test back, there are a few things that are above normal, including my white blood cell count, but I don’t know what that means. I will just have to wait to find out from my doctor. I tried to do research to figure it out, but I still don’t know what it all means. No matter what, I feel better today than I have since I started this medication.