Broad Shoulders

My first phone call with Travis today consisted of me talking him through getting a Haldol injection. Simply put, he is over trying medication after medication in his quest to feel better. He went as far as telling me that he hated me for putting him through it. I was able to calm him down and he eventually let the nurse that comes by once a week to fill his medication box give him the injection.

It doesn’t help that Travis has a fear of needles.

Travis has been prescribed every family of antipsychotic medications over the years with the hope of easing his severe mental health issues. Each one of them showed some promise during the honeymoon period, but then the side effects kicked in. Side effects that were too harmful to allow continuance of the prescription. Side effects like aggression.

We also tried years of no pharmaceutical medications, just natural supplements. To no avail.

The one medication that seemed to work best was Abilify. I described its effect as it “smoothed his rough edges”. Travis was better able to let some things roll of his back. He seemed a bit more agreeable. Travis has been on Abilify for years.

The problem is that Travis’s physical health has been trending downward. He had been prediabetic for years, but his numbers took a sudden turn for the worse and his psychiatrist believes it is because of the Abilify.

It’s a difficult challenge. When Travis is not on an antipsychotic medication his behavior is unmanageable. His suicidal ideation worsens. When he is on an antipsychotic medication it has a negative effect on his physical health.

The challenge is that I have to weigh the possibility of him hurting himself against the possibility of his physical health deteriorating to the point of no return.

But in this instance, is the downward trend because of the Abilify? I’m confused because Travis has been on Abilify for years and stayed in the prediabetic number range. Why would it suddenly change?

We’ve been monitoring Travis’s blood count closely. The doctors have been concerned about his elevated red blood cell count, hemoglobin and hematocrit. They believe this is due to his sleep apnea. So they advised that Travis have his tonsils removed. After this surgery his sleep apnea went from severe to mild. Yet his red blood cell count, hematocrit and hemoglobin numbers went up even higher.

Travis was then fitted with a BiPap machine. He currently uses it about 67% of the time. Not as much as he should but even with some use, his red blood cell count, hematocrit and hemoglobin are still elevated. I am having a hard time understanding why the numbers aren’t getting at least a little better with the surgery and BiPap use. My concern is that there may be some other underlying condition causing the increased red blood count. And the sleep apnea is further aggravating it.

When a person has too many red blood cells the blood is thicker and moves more slowly. The organs are at risk of not getting enough oxygen, causing various symptoms. Is it possible that Travis’s blood issue is creating issues with organs and messing with his glucose levels?

Travis has been diagnosed with Polycythemia. Polycythemia refers to an increase in the number of red blood cells in the body. The extra cells cause the blood to be thicker which increases the risk of other health issues. This is why I keep pushing to get to the root cause of his elevated numbers. Secondary polycythemia can be caused by sleep apnea. But primary polycythemia can be more serious.

Some of the symptoms of primary polycythemia include an enlarged spleen, enlarged liver, unexplained weight loss, fatigue, gout, shortness of breath, and sweating. Travis had a CAT scan when he went to the emergency room a few weeks ago. His spleen was enlarged. Travis lost 30 pounds in a six week period. He has been suffering with gout for years. He has had an enlarged liver for years.

So yes, I want to be sure he gets diagnosed with the proper form of polycythemia. I hope it’s secondary. That is less serious. In my research I did come across a study titled, “Polycythemia is Rarely Caused by Obstructive Sleep Apnea”. Deep sigh.

One study that I read said that insulin resistance can be associated with increased red blood cell count.

Because of that, I tried to talk the psychiatrist into waiting just a bit longer before making any changes to Travis’s psychiatric medications. Travis is scheduled to see a hematologist (blood specialist) at the end of this month. I made the appointment several weeks ago, this was the first available opening.

Travis’s psychiatrist is convinced that his high glucose is related to the continued use of Abilify. He may be right. I wanted to wait until after seeing the hematologist because I’ve been through several medication changes with Travis and it is not easy. For him. For me. For anyone.

While doing some research I came across an article, “Diabetes and Cardiovascular Care Among People with Severe Mental Illness: A Literature Review”, by Christine Mangurian, MD, MAS, John W. Newcomer, MD, Chelsea Modlin, BA and Dean Schillinger, MD. I found the article on www.ncbi.nlm.nih.gov. I felt like the National Institute of Health is probably a good source.

The article states, “Close to 19 million US adults have severe mental illnesses (SMI), and they die, on average, 25 years earlier than the general population, most often from cardiovascular disease (CVD). Many of the antipsychotic medications used to treat SMI contribute to CVD risk by increasing risk for obesity, type 2 diabetes, dyslipidemia, and hypertension.

People with SMI have higher rates of the metabolic syndrome and CVD compared to the general population (40 % vs.30 %).

Smoking rates among the SMI population are remarkably high (59 % of people with schizophrenia smoking vs 18 % in the general population). There is strong evidence that tobacco use is an important remediable factor that contributes to high risk for CVD. In addition to smoking, other behavioral factors are prevalent among this population, including poor diet and lack of exercise.

People with SMI have much higher risk of developing diabetes, with the prevalence of diabetes in people with SMI typically being twofold to threefold higher than age-matched samples from the general population.

Consistent evidence from a large number of studies using a variety of research methodologies indicates that many second generation antipsychotics (SGAs) increase risk for obesity, dyslipidemia, type 2 diabetes and other metabolic abnormalities, with similar evidence for some first generation antipsychotics (FGAs), although fewer studies have focused on these medications due to reduction in their use over the past two decades.

Notably, different antipsychotics are associated with different levels of metabolic risk. For example, risk for weight gain and obesity, a well-established risk factor for both diabetes and cardiovascular disease, is generally highest for clozapine, olanzapine and low potency phenothiazines, like the first-generation antipsychotic (FGA) chlorpromazine. There is substantially lower but still intermediate risk for weight gain and obesity with risperidone, quetiapine, asenapine, and iloperidone, as well as high potency FGAs like haloperidol (aka Haldol) and fluphenazine. There are lower levels of observed risk for weight gain and obesity for ziprasidone, aripiprazole (aka Abilify) and lurasidone. Risk for incident diabetes among large samples of SGA users is also highest for clozapine and olanzapine, but not insignificant for the other FGAs.”

That’s a lot to digest. Take a look at this table from the article below. As a side note, Travis has tried every one of the second generation antipsychotics. Abilify is first on the list. Let’s compare it to the medication his psychiatrist recently prescribed to replace the Abilify, Haldol which is a first generation antipsychotic.

According to this article, Abilify shows a minimal risk of causing metabolic abnormalities, whereas Haldol a step higher at low risk.

Abilify has a low risk of causing tardive dyskinesia whereas Haldol has a high risk. Tardive dyskinesia is a condition of uncontrollable movements affecting the face, torso, and/or other body parts. Travis did end up with an eye blinking tic from a medication he was prescribed when he was a child.

Also according to this article, Abilify has a minimal risk of causing hyperprolactinemia and Haldol has a high risk. Hyperprolactinemia in men can lead to impotence and infertility.

+ = minimal risk ++ = low risk +++ = moderate risk ++++ = high risk † Long-acting injectables are assumed to have the same side effect profile as the oral preparations. However, some advantages for long-acting preparations due to more uniform serum concentrations may be possible ‡Given the significant overlap in risk, weight gain, lipid abnormalities, and diabetes were combined into one category § EPS = Extrapyramidal symptoms; TD = tardive dyskinesia.

I sent the article to Travis’s psychiatrist as part of my argument to keep him on Abilify as opposed to prescribing the Haldol. His psychiatrist said there are articles to support several different theories and that the makers of Abilify probably lined the pockets of the doctors that wrote this article. He said that big pharma has a great deal of power.

Which I get, and agree with. I was shocked to hear him say it because he did not support Travis doing natural supplements vs. taking pharmaceutical medications.

Another side note: Psychiatrists do not appreciate moms sending them articles or asking questions about the medications they want to prescribe. That has never bothered me! I am who I am.

Travis has been weaning off the Abilify and starting on the Haldol over the last six weeks. He has complained about having extreme fatigue. His psychiatrist talked to both of us on computer video about trying the Haldol as an once a month injection. He said that it would cause less fatigue because it averages out to a smaller daily dose. Travis said ok.

Travis’s nurse called Travis at the end of last week when the injection was ready for pickup. Travis said he would rather get the injection today, the normal day his nurse comes by.

And then I got the not very nice call this morning.

Travis has no understanding of the hours I put in trying to get it right. Trying to help him to feel better. One thing he knows for certain. When something is not, in his opinion, right in his life, it’s mom’s fault. Good thing I have broad shoulders.

“She made broken look beautiful and strong look invincible. She walked with the universe on her shoulders and made it look like a pair of wings.” - Author Unknown