Getting acquainted with common medications
By Michelle Morra

Treating schizophrenia would be so much easier if not for one fact: The more effective the medication, the stronger the side effects. For Rainbow, a 29-year-old woman in Los Angeles, antipsychotic medications caused considerable weight gain, but the alternative was far worse.

When a private doctor diagnosed her as schizoaffective (bipolar), Rainbow tried a cocktail of neuroleptics and antidepressants with limited results. One drug, quetiapine (brand name Seroquel), seemed to wipe out her personality and she lost her zest for life. But because the negative symptoms of schizophrenia also seemed reduced, Rainbow continued taking the drug in hopes her reaction would improve. It would be some time before she found the right medication.

Knowledge is power
People diagnosed with schizophrenia and their family members need to learn all they can about antipsychotic (also called neuroleptic) medications. Besides these, doctors sometimes prescribe antidepressants, mood stabilizers, and/or anti-anxiety drugs if necessary, all of which affect different people in different ways.

In older, first-generation antipsychotic drugs, such as chlorpromazine, fluphenazine, and haloperidol, side effects may include dry mouth, blurred vision, body stiffness, tremors, slowed movement, loss of capability for facial expression, and restlessness. Long-term use may also cause involuntary tic-like facial movements.

Second-generation antipsychotic drugs (those developed in the mid-1990s) include olanzapine, risperidone, and a renewed clozapine. In these, the above-mentioned symptoms are reduced, but the tradeoff is that they cause weight gain, high blood sugar levels, and high cholesterol, as well as decreased sexual performance, menstrual problems, and a sensitivity to sunburn or skin rashes.

On a much brighter side, both “generations” of drugs have the potential to considerably reduce the negative symptoms of schizophrenia.

Finding your best med
Besides the common side effects, it is important to be aware of the other, potentially life-threatening reactions that can happen in rare cases.

When her son was hospitalized in 2002 and prescribed clozapine (brand name Clozaril), Gloria G. Harris, PhD, knew there was a risk of agranulocytosis, failure of the bone marrow to make enough white blood cells. Her son did develop this potentially life-threatening reaction and nearly died.

“His psychiatrist placed my son’s name and social security number on the Novartis Pharmaceuticals’ ‘non-rechallengeable’ master list, which identified him as a patient who should never again take Clozaril,” Harris says.

But in 2005, her son was involuntarily hospitalized and assigned to a psychiatrist who prescribed clozapine. After finding out, Harris left messages to inform the doctor that her son must not take that particular medication and that his reaction to it was documented, but the psychiatrist prescribed it anyway. Three weeks later, he had a fever of 105.3 F and a dangerously low white blood cell count. He was subsequently placed in a medically induced coma. A hematologist managed to save Harris’ son, who today lives in a group home and attends an out-patient program.

“Although Clozaril has proven to be beneficial to many consumers,” says Harris, “caregivers should be aware of the potential life-threatening risk for a small percentage of those who suffer from schizophrenia.”

Jeffrey Lieberman, MD, of the American Psychiatric Association’s Council on Research and Quality Care and an Amember expert in schizophrenia, says such an adverse reaction happens in about 1 in 150 patients. For the other 149, Clozapine can be very effective.

“If somebody has a severe form of illness and their symptoms are not controlled by other medicines, Clozapine should, without a doubt, be tried,” he says. “But it also has the most side effects. With greater efficacy comes greater side effect risk.”

In his experience, Lieberman has found the next most effective drug to be olanzapine which, like clozapine, can cause weight gain and lead to diabetes. If someone doesn’t want to risk those side effects, ziprasidone and aripiprazole are suitable alternatives. It is important to note, however, that no one treatment  will work for everyone. The efficacy of medication will vary from person to person, as will the side effects.

In Rainbow’s case, the same drug that nearly killed Harris’ son ended up being the one that worked for her. After years of various combinations of medications, Rainbow’s mother, Susan Klos, asked if her daughter could try clozapine. Because Rainbow was under hospital supervision for 20 days at the time, her doctor was able to take her off of her other medications and start her on clozapine, while carefully monitoring her white blood cell count.

“For her, it was a miracle drug,” says Klos. “I would say it works 75 percent [of the time] because she still hears voices and talks to them every day, but the delusions, the paranoia, and a lot of her symptoms are really minimized.”

Trial, error, and patience
Neuroleptics are a vast improvement over the days when extended hospitalization was the only treatment for schizophrenia. But why isn’t the science more exact? Klos puts it this way: “Because you’re trying to alter the brain chemistry, it’s not like you can stick a needle in there, suck out some juice and measure serotonin and dopamine.”

So for the patient’s sake, caregivers should stay positive and allow for some trial and error. Meanwhile, stay positive.
“If family is saying a week later that the medication isn’t working, that will affect the patient and what they think about the medication,” says Donald Addington, MD, chair of the Canadian Psychiatric Association’s Board of Directors.

Addington says it often appears at first that a medication is not working because doctors will start by prescribing at a very low dose. This practice is safer but not always as immediately effective. “Particularly the first time around, it’s better to go slowly and gradually increase the medication if that’s clinically safe.”
Stick to the prescription plan while closely monitoring how the person feels and behaves, he advises. If the side effects are unbearable, talk to the treating doctor about possibly reducing the dose or switching to another drug. Meanwhile, make your loved one as comfortable as possible at home.

Transitioning from one drug to another should always happen with medical supervision, at least on an out-patient basis. The doctor might overlap the old drug with the new one, or stop one and start the other right away.

The seriousness of missing a dose depends on the medication: Some antipsychotic drugs bind to the receptors in the brain better than others. The tighter-binding ones stay in the person’s system for days. In general, Lieberman says, one missed dose isn’t usually a problem, but several missed doses might be.
And what if the patient feels great and wants to do away with his medication?

“Eighty percent will relapse within the year,” Addington says. He recommends considering medication as relapse prevention, just as taking blood pressure pills―even when you feel fine―helps prevent a heart attack or stroke.

Feeling the clouds lift
When a medication starts working―and in the majority of cases it will― relief is in sight. Quite often, the first positive sign comes in the form of non-specific symptoms, according to Addington. “The person starts to sleep better. He or she might feel less anxious and notice a reduction in severity or frequency of hallucinations. Disorganized thoughts will likely improve and, eventually, delusions will fade.”

But what if the person experiences no benefits after several weeks, or finds the side effects unbearable? Signs that a drug might not be working include the ongoing presence of delusions, hallucinations, and disorganized thinking after a couple of weeks or longer.
Patience on the caregiver’s part is a virtue, says Lieberman. Stay in regular contact with the treating physician, because roughly half of patients respond well to the first medication, but the other half need to try a second or even third option.

Rainbow’s extreme psychosis made hers a challenging case. But her willingness to keep trying―and her mother’s patience and persistence―resulted in effective treatment. She has not only found a drug that suits her, but also a job she can handle― answering phones at the small film production company where her mother works.

Rainbow talks to the voices in her head, but only between phone calls. To a visitor she could easily pass for an actress who’s rehearsing her lines. But her fellow employees―Mom included―understand and support her.

“She touches people in such a positive way,” says Klos. “People are always telling me she’s a really sweet, gregarious, wonderful person.”

“She touches people in such a positive way,” says Klos. “People are always telling me she’s a really sweet, gregarious, wonderful person.”

Best of all, Rainbow has regained her zest for life, her mother says. She is so proud of who she is.

Michelle Morra is a freelance journalist, corporate writer, and aspiring novelist who works from her home in Toronto, Ontario.