Posy Shares Her Thoughts on Rasagiline
Posy has so many questions about the reasons for Parkinson's disease (PD) symptoms and the treatment for her condition. The answers she seeks are often found on the ParkinsonsDisease.net website. After reading this article, Posy hopes you might share your experiences with rasagiline.
Responding well to treatment
Posy started taking Madopar (levodopa/carbidopa) in December 2017. She immediately felt better than she had in many years.
Always busy, she would rise early. After completing her tasks, she drove happily to a lovely sports club where she participated in a dance class 3 times a week. She lunched with friends on the terrace overlooking the lake.
Afternoons were filled with meetings and composing a musical. Evenings were spent at choir rehearsals, playing the piano in a few concerts, socializing, and enjoying herself. Travel was exciting. Life was good.
Issues with fatigue and insomnia
Sadly, a year later, Posy was too tired to drive or dance. She often avoided making plans unless it was for a short visit or event. Then (and now) she had to crash onto her bed as soon as she got home.
As a person with Parkinson's, Posy was still presenting to the medical profession as stage 1. She could still run, bend, and perform perfectly well at her check-ups. She just lacked the energy to do this on a daily basis.
Suddenly, Posy could not keep her eyes open while driving and had to pull over to the side of the road 3 or 4 times on each 45-minute journey. As she realized that her somnolence might compromise her ability to drive safely, she had to surrender her driver’s license and sell her cherished new convertible.
Posy was now unable to sleep at night. At all. She tried all sorts of over-the-counter remedies and behavioral changes, but to no avail. That summer, with the windows open at night, Posy heard the next-door church bell chime every 15 minutes.
Was rasagiline a culprit?
What had brought on this radical and chronic onset of insomnia? Was this a natural feature of PD? Presumably, getting no sleep at night was causing the dreadful fatigue she experienced the next day.
It seems unlikely that levodopa itself was the culprit as Posy’s acquaintances with Parkinson's, all on levodopa, were unaffected by such crushing fatigue.
Is it is a coincidence that her cycle of insomnia and fatigue started around the time that she was prescribed rasagiline?
Rasagiline, prescribed to enable enhanced absorption of levodopa, certainly comes with the usual dire warnings of side effects and contraindications reported by patients. Fatigue and loss of interest in life seem fairly common!1
Considering other possibilities
If rasagiline alone was not the culprit, was this fatigue attributable instead to the natural progression of Parkinson’s and/or the consequent augmentation of her dose of levodopa?
Could it be the combination of rasagiline with a forbidden food? This seems unlikely, since Posy has never eaten "tyramine-rich foods" such as aged cheeses or drank (a glass of red wine is a rare treat!)1
Perhaps it's due to combining medicines? Posy’s consultant reassures her that her additional small doses of escitalopram and amitriptyline are safe, even though both are named on the "not recommended with rasagiline" list. Please check with your own physician before you combine any medications.
Other considerations and side effects
Is rasagiline the culprit for other unpleasant symptoms? On waking, Posy takes her only dose, together with her first dose of Madopar. Suddenly, even when she had been feeling comparatively refreshed, Posy feels nauseous and hopelessly sleepy for a couple of hours.
On a good day, Posy can still get up and crack on with life, confident and content. The bad days are such a waste of time.
To avoid being constantly on alert, Posy is now turning off her iPhone’s notifications overnight (family will call the landline in an emergency).
Posy has just been told to give clonazepam (for leg pain and insomnia) another try. However, now it should be taken an hour earlier, to promote a clearer head the following day. We all know how vital it is to take levodopa precisely on time! Hm ... maybe taking rasagiline at night might help?
There are so many vagaries around medications prescribed in the treatment of Parkinson’s. When scientists find a cure, Posy hopes that all this faffing around with problematic treatments will be a thing of the past.
In the meantime, Posy would really love to know ... how have you fared with rasagiline?
On average, how many times per month do you (or your caregiver) go to the pharmacy?
Join the conversation