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.

Fatigue, Low Energy, and Weight Gain

The Clozapine that I started almost three weeks ago has been causing some problems for me. Most of the side effects went away; however, I’m still dealing with fatigue and low energy. The fatigue has greatly improved, but it is still there. During the first couple weeks of this medication, I could fall asleep in the middle of doing something. For example, I fell asleep while I was eating dinner once. Luckily, I only dropped my fork and not my bowl. But for the first couple weeks I was nervous to drive. I was afraid that I would fall asleep while driving, so I took some precautions such as bringing my dog in the car with me, calling someone on speakerphone, rolling down the window, or playing music that I can sing to. Some of these methods were thankfully effective.

I’m no longer dealing with that same intense fatigue that I had before. I’m still tired, but I don’t feel as if I have no control over whether or not I stay awake. I’m just tired; it’s been hard to get moving. I’m trying so hard to get today’s to-do list done, but I have such low energy that I’m not sure if I can get off the couch and even get dressed. I don’t even have many things to get done today, and I’m still having a hard time doing everything. I think the reason my psychiatrist had me increase my Clozapine dosage from 100 mg to 125 mg was because the fatigue and low energy side effect finally started to decrease. I’m so happy that things didn’t really change with the dosage increase. My fatigue and low energy hasn’t changed. I wish it would go away, but at least it’s getting better rather than getting worse.

One other problem I’m having recently is weight gain. I’m not sure if this is a side effect from the Clozapine or what else it could be from. The weight gain started before I got on the Clozapine, but I was gaining weight slowly at that point. Now, I seem to be gaining weight much quicker. I know one factor is because of my fatigue and low energy. I barely have the energy to get up, of course I don’t have the energy to workout like I was doing before. I really need to push myself harder. Maybe I will start with taking the dog on a walk tonight. I know for me, the more I do physically, the more energy I end up having. Sitting on the couch doing nothing makes my fatigue/energy and weight gain issues worse. Hopefully, I can create a new cycle that involves energy and weight loss.

Weekly Blood Work – Same Phlebotomist

I have been nervous for days now about the blood work I had to get done today. Most of my nerves were because of the inappropriate phlebotomist from last week that kept asking me personal questions and telling me what I should do for my bipolar disorder. I have been practicing all week just what to say to her if she was the one drawing my blood again. I was prepared; at least I kept telling myself I was prepared. I was ready to tell her, “I don’t want to talk” if she asked me a question, or to ask for someone else completely. To be honest, I wasn’t prepared. I took a Valium to calm myself out of my anxiety attack and I went to the lab.

I arrived at the lab and stood in line to check in. I made a 2pm appointment, but they were running late. At least my Valium was kicking in, I was able to breathe, my chest pains stopped, I started shaking less, and my mind began to slow. I looked behind the counter and only saw one receptionist and one phlebotomist. Then my heart started to beat a little faster again, it was the same woman from last time. As I walk past her, she asks me “Did you think about what we talked about last time?” I can’t believe that she was that invasive two weeks in a row, better yet, she broke HIPPA laws two weeks in a row. I was surprised, but my response comment came to me quickly. I told her, “Yes, and I’m happy with the way I’m doing things.” I couldn’t believe it, but she actually backed off. The only other things she said was just normal chit-chat, to make time go by quicker. What I said was nothing like what I planned on saying, but it still seemed to work, and that’s all that really matters.

If she says something to me again next week, I will report her. It’s really hard for me to report her or tell her boss about the situation; I’m not sure why it’s so difficult, it just is. My husband keeps telling me I should report her. He’s probably right; I should probably do it for the people she treats after me. Even just the thought of reporting her, or having my husband report her, makes me start to have a panic attack. I don’t know if I could do it; I don’t know if I want to do it.

An update regarding the Clozapine: My fatigue has been decreasing every day and I have no other side effects that I’m noticing. I informed my psychiatrist these facts and that I completed my weekly blood work today. He told me I could up my Clozapine dose to 125 mg. I was so excited when I heard, I was worried he was going to stop the medication because of my blood work results, but he is still allowing me to move forward on my dosages.

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 14

I’m still on the 100mg dose. My psychiatrist says that he’s keeping me at that dose because of the energy and fatigue that I’ve been experiencing. He doesn’t want to increase my dose until I can do some regular activities without having to nap for a couple hours afterwards. I’m very grateful that he’s not pushing the dosage increase. I’m supposed to start keeping track of this symptom using a number scale of 0 to 10, where 0 is none and 10 is the worst. This will be difficult to do, but I’ll try.

Today I woke up again with no side effects, and I even slept through the night. I won’t know how my energy and fatigue is until later in the day. I will rate yesterday’s energy and fatigue as a 5. It’s better than most days, but I’m still falling asleep if I sit down and rest for even a couple minutes.

I think I’m going to stop posting about my Clozapine rechallenge every day because it seems to be the same thing each day. If there are changes I will definitely post them, but I’m finally at 2 weeks, so I think I can cut back on these posts.

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.

Inappropriate Phlebotomist: Difficult Blood Work Visit

I had quite an interesting visit to the lab today to get my weekly blood work done. I went to the same lab I normally go to, and as usual, I ended up with a new phlebotomist. I signed in for my appointment 10 minutes early and then sat down in the waiting room. Within a couple of minutes, a woman yells my name and says, “Come back and go to room 5”. Normally, they come into the waiting room to call your name and walk back to the desired room with you; I was already off to an odd start. I sat down and she entered the room moments later. I told her that they normally use my right arm.

She looks at me and asks if I’m okay. I said I was very tired, that it’s a side effect of the new medication I’m on, the med that is causing me to have my blood work done every week. Then the odd and inappropriate questions and comments began. She asked what medication I was on that required weekly blood work; I told her it was Clozapine. She asked why I decided to go on this medication; I reluctantly told her I’ve been dealing with suicidal ideations for 5 or 6 months. I didn’t want to answer her questions, but I have a hard time saying “no” to people. She asked if I see a therapist; I said I see both a therapist and psychiatrist; I informed her that I’ve been dealing with this since I was 14. She asked what I was being treated for; I told her I’m diagnosed with bipolar 1 and PTSD. Then she asked why I was diagnosed with PTSD. None of this is any of her business, but I was so uncomfortable and struggle to tell people to back off, so I hesitantly told her it was from a bad relationship.

Then she started to tell me that her husband was schizophrenic and he took medication too, as if that’s supposed to mean something to me and make it okay for her to ask me these questions. At this point, she began telling me what I should do to help my disorders, as if I don’t try to help myself and I don’t know what’s good or bad for me. She told me I should start doing some kickboxing or martial arts, which would help to empower me so I felt better. I told her I would think about it, but she kept telling me that I should do it. I explained that I had a double knee surgery and I have to take things easy, and she told me I was using that as an excuse. She asked if I used meditation; I told her it was something I was working on. Her next question was if I took time journal at all. I told her that I just started a blog and I found it extremely helpful. She responded by telling me that I should write everything out by hand, that typing doesn’t have the same effect. I told her that it works for me, but she kept telling me what I should do.

I called my mom as soon as this appointment was over and told her all about it. I don’t always know what’s appropriate and I needed to make sure I wasn’t overreacting. I wasn’t sure if being offended was necessary, I don’t trust my emotions lately. My mom reaffirmed my emotions. She told me that it was okay to be upset; this woman should not have asked me these questions. My mom told me I was “should on”. She made me laugh and loosen up a little bit. Since I struggle so much with saying no, my mom helped me find the appropriate words in case it happens again. I can say, “I’m not comfortable with this conversation. Can we please stop talking?” She also told me that I could talk to a supervisor if I wanted or I could simply ask for another phlebotomist. Talking to my mom validated the emotions I had about my experience. While I decided I don’t want to do anything about it unless it happens again, my mom helped me feel more comfortable with what I could say if I decide to talk to a supervisor about it. After having a short conversation with my mom, I felt as if I could take control next time; I could decide what I’m comfortable saying. I’m no longer nervous about my next appointment. I always feel more comfortable after talking with my mom.

Clozapine Rechallenge – Day 12

My dose stayed at 100mg again last night. My sleep keeps improving. Last night, I fell asleep easily and slept about 6 hours without waking up. When I woke up, I was tired, but had no other symptoms. I guess my body is getting used to the medication.

Yesterday, after taking a showing and getting dressed, I had to rest for couple hours before running errands. I seem to get tired very easily. After resting, I ran some simple errands. I came home from that and ended up crashing on the couch. I napped for about two hours; however, I could only sleep 5 or 10 minutes at a time. It appears that I get exhausted very easily after any physical exertion.

Clozapine Rechallenge – Day 11

Yesterday, I thought that it was going to be a great day because I felt pretty good when I woke up. However, I think I did too much. I ran some errands and went to visit a friend. When I got home, I crashed on the couch for about 2 hours, but I could only sleep about 10 minutes at a time. I didn’t expect to have this much exhaustion. I need to learn to only do a little at a time and allow myself to rest in between activities.

I stayed at the 100mg dose last night, but my psychiatrist also had me go off my Seroquel completely. I ended up sleeping pretty well, probably about 6 hours. I was worried I wouldn’t sleep because of my naps, but that wasn’t a problem. I did wake up with a lot of muscle soreness, but it was gone only an hour later. I was also unsteady on my feet, but that also went away quickly. I have no chest or throat pressure today. Right now, I feel pretty good. I have a lot to do today, and I’m going to do it one step at time, making sure I get to rest in between.

Clozapine Rechallenge – Day 10

Today, I feel the best that I have felt since I started taking this new medication. Last night I took 100mg again and my Seroquel is also down to 100mg. I woke up in the middle of the night, but only because the dog started barking continuously at some random loud noise, but he was doing his job. So I decided to sleep out on the couch in case it happened again, that way I could calm him down quicker. Other than waking up because of his barking, I slept through the night from about 2:00am until 8:00am. Every day, my sleep is improving. I was pretty unsteady on my feet in the middle of the night and when I first woke up, but that went away within 30 minutes of waking up. The pressure in my chest and throat has almost disappeared. My temperature is still doing well at 98.1. I haven’t been experiencing any other side effects today.

I am ecstatic that I’m doing so well. The first time I tried Clozapine last year, I had such a difficult time with it. My biggest issues were dizziness and sedation. I’m doing really well with those issues. I don’t want to get my hopes up, but I really think that it might work this time.

My Side of the Pole

Bipolar – Mental Health

Tag: Clozaril