Spun Out of Control On Rytary and Shortage of Neuropsychiatrist is a Dangerous Development

In Boston, MA and I believe nationwide, we have a huge shortage of neuropsych pharmacologists and psychiatrists seeing Parkinson’s Disease patients. I am not getting the quality of care I need. Before PD I saw a psychopharmacologist for treatment of depression for 15 years. Now, after waiting 7 months for an urgently needed visit, I see a psychiatrist who does not know me at all given he only sees me for 10 minutes maximum and listens to me for about 4 minutes during each of my 3 visits to date. My urgent need to see a psychiatrist was due in large part due to amplification of mood swings creating manic to panic cycles which paralleled on/off times, after a year on a longer lasting form of Carbidopa Levodopa, Rytary, culminating in severe breathing dyskinesias and trips to the ER for breathing difficulties which were diagnosed as panic attacks.

I know dozens of patients having this response to Rytary, especially if they are alternating Rytary and Sinemet. It defies my experience that Rytary is listed as the same drug as carbidopa Levodopa. Many of these patients are borderline suicidal, spun out of control on a Sinemet substitute drug, the longer acting newer formulary, Rytary. The families of these patients on Rytary are worried sick and feeling helpless.

I was fortunate to have seen a MDS for a second opinion who put me through a month long out-patient “drug holiday” style major reduction of Pd meds. It was sheer hell, but it worked. My dyskinesias, manic and panic stopped within within 24 hours of the start of my “drug holiday” but was followed by a 4-6 week period where movement and basic self care was virtually impossible. I was living on a tiny dose of Sinemet. I was constantly frozen, staggeringly through walking, despondent, utterly fatigued and convinced that if this was the quality of my life with advanced Parkinson’s Disease, it is a life I would choose to end.

Most patients in my situation are not withdrawn from drugs. They are given even more drugs, as was I, like Lorazepam for panic attacks and mood stabilizer drugs for the amplified mood swings caused by Rytary. Many of us, myself included, go to ER’s with trouble breathing. We are then, logically referred for DBS (Deep Brain Stimulation surgery) to reduce dyskinesias, which, in my case, stopped completely, as did the manic/panic attacks 24 hours after reducing my Parkinson’s Disease drugs. I don’t hear of patients being tried on a drug reduction process first, before being referred for brain surgery.

I share my experience after a gut wrenching phone call with the spouse of another young onset Parkinson’s patient going through this hellish experience, spun out of control on Rytary with no doctor recognizing this patient is being overdosed. Despite its classification as an equivalent of Carbidopa Levodopa, Rytary felt like a much riskier drug than Sinemet in my personal experience, and patients need to know. I submit this letter on behalf of over 2 dozen patients I know who are living through or have lived through this same situation.

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