Parkinson’s Disease Medication Adds to the Struggle, But Also Relieves It


Sherri Journeying Through

Aren’t you tired of taking medicine? You wake up shaking and can’t just go and shower the way you used to because your body doesn’t listen to your brain. Instead of hopping in and out of the shower, the process takes f.o.r.e.v.e.r. Before you “hop in and out,” you take a morning medicinal cocktail and wait for it to kick in.

Other people smile and say, “You look so good. You don’t even look like you have Parkinson’s.” I always want to reply, “What is Parkinson’s supposed to look like, anyhow?”

I remember hearing about a man who flippantly shared his story in a local newspaper, saying that at times his Parkinson’s is so out of control that people think he is trying to choke himself. I think he may need a new doctor or a different treatment. But maybe those options wouldn’t make a difference. 

Parkinson’s looks different on each person. It’s like putting the same shirt with the same print, in the same size, on five different people. It’s going to look and fit differently on each person. No one will wear it the same. No one wears the same disease in the same way, and the same is true for their medications.

People may say we “look good.” That may make them feel more comfortable, at the moment, as there’s no shaking to stare at and wonder all the things they wonder about when we shake. Do they do it at other times for attention? Have they been misdiagnosed? Are they overmedicated or undermedicated? All three scenarios could be a reality.

Whether we “look good” or not, there is a raging battle inside of us to claim our spirits, will, mind, joy, calm, and peace. On days like today, the disease may have gained a bit of ground physically, emotionally, mentally, and more. But also on days like today, we can remind ourselves that we have a God who sees inside the places no one else can see — the places that don’t look or feel so good. He sees the battle and orders a reprieve, if only for the slightest moment.

It could be a reprieve from those who tease at our expense or from the stares that are ignored with the knowledge that people stare out of ignorance, like I once did. Or, a reprieve from the weariness, tiredness, pain, discouragement, and sometimes the despair.

Yet, there is no reprieve from the plethora of medications, so you take the next dose. Three red ones, four orange, 13 white, one yellow. It’s up to 23 a day now, more with pain or a headache. Sometimes they’ll make you sick, sometimes they make you tired, sometimes they make you sick and tired. Sometimes, they make you feel better than you do without them.

If I didn’t take my medication, would I not “look good” but feel better? Or would I “look great” and feel worse? Maybe I’d start choking myself like the man in the newspaper. I don’t know.

I do know that I don’t like taking all that medicine, but I do like being able to live life to it’s fullest — whatever that might mean for me. If taking those pills helps (and they do), then I’ll swallow number 13, quit complaining, and enjoy an afternoon nap. After all, the house is quiet and empty, being that I scared everyone away by being cranky thanks to missing my noon dose.  


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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Safety Watchdog ISMP Issues Alert on Acadia’s Nuplazid Therapy for Parkinson’s

Nuplazid alert

The Institute for Safe Medication Practices (ISMP) questions the approval of Acadia Pharmaceuticals’ antipsychotic therapy Nuplazid (pimavanserin) in the face of reports that it is ineffective in treating Parkinson’s disease and leads to severe adverse effects, including death.

Researchers shared these concerns in an article, “Safety Signals for Two Novel Drugs,” that appeared in the ISMP publication QuarterWatch. In it, the Pennsylvania-based ISMP issued a safety alert for the medication, and cautioned against combining Nuplazid with Seroquel (quetiapine) or other antipsychotics. It cautioned that such treatments are not recommended for older people, nor are they approved for use in Parkinson’s.

Unlike traditional antipsychotic medications — which mainly block dopamine signaling in the brain, Nuplazid blocks certain types of serotonin receptors. Blocking dopamine using other antipsychotics may trigger worsened movement symptoms in Parkinson’s patients, as these medications essentially counter the effect of levodopa and similar Parkinson’s treatments.

The U.S. Food and Drug Administration (FDA) approved Nuplazid in 2016, despite limited evidence of its effectiveness, ISMP noted.

The institute has access the all adverse events data, best known as MedWatch reports, sent to the FDA. The team noted that Nuplazid was among the 66 medications for which the FDA received 1,000 or more adverse events reports.

ISMP examined four main groups of adverse events for the treatment over the course of a year since Nuplazid’s approval. While the medication intends to treat psychotic symptoms — hallucinations and delusions — the main reported adverse event was hallucinations.

Nearly 22 percent of all reported adverse events were hallucinations. On second place were reports of lack of effectiveness, making up 15 percent of all reports. Confusion and death were the other two frequently reported issues.

This indicates that either the treatment is ineffective, or it worsens psychotic symptoms in some patients, ISMP said. Moreover, the data is consistent with that from the Phase 3 clinical trial (NCT01174004), which led to the medication’s approval.

In that study, both hallucinations and confusion were more common in treated patients compared with patients getting a placebo. An FDA medical reviewer had also underscored that Nuplazid treatment more than doubled the risk of death and serious adverse events in this trial, the ISMP underscored.

The reviewer had recommended against the approval of the treatment, based on this finding and the fact that Nuplazid was minimally effective — an effect assessed with an unvalidated tool. In addition, three earlier trials had failed to show a benefit from the treatment.

These facts made the ISMP side with the cautious reviewer, stating that “We found that pimavanserin was FDA-approved on limited scientific evidence that its benefits outweighed its risks.”

In addition to the adverse events reports, ISMP researchers also noted that many patients used Nuplazid together with Seroquel or other antipsychotics that block dopamine signaling. In addition to not being recommended or approved for the treatment of Parkinson’s psychosis, a recent review noted that there is no evidence that such combinations are effective.

The ISMP, however, gave Nuplazid’s maker, Acadia, a chance to comment on the observations.

The large numbers of adverse event reports, Acadia said, could partly be explained by the company’s extensive contact with health professionals and consumers through a specialty pharmacy network that distributes Nuplazid. Acadia also run a patient support program, which may improve reporting.

But the company also said that reports of hallucinations may reflect the slow onset of Nuplazid’s treatment effect — it takes four weeks for the treatment to be fully effective. Reported hallucinations may, therefore, have occurred before the drug became fully effective, it claimed.

“We share the FDA medical officer’s concerns about the approval of pimavanserin in the face of weak evidence of effectiveness, on the basis of a single small trial, and with increased rates of serious adverse events including death. The early but substantial adverse event data further support these concerns,” the ISMP concluded.

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Source: Parkinson's News Today