Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
It's been a few months, since I've been here on DS. Next week, I hope to be able to catch up on all the posts since my last visit. For now, though, I want to quickly share with other members of this PD group an experience with Rytary that necessitates the attention of anyone considering or already taking Rytary, especially if taking it during an advanced PD stage.
Sometime last fall, I'd inquired of other members of this PD group re: feedback about Rytary. It being a new PD drug, there was little such information here and elsewhere on the Internet. After several months of urging my mother to switch from Carbidopa/Levodopa 25/100, on which medication my mother had been since 2007, my mother and I reluctantly agreed to give Rytary a try.
My mother didn't seem quite her usual self after making the switch in early-January but her neurologist asked us to give it a bit more time. Last week Wednesday, at our most-recent neurology appointment, we noticed a slight tremor in her hands.
Then, out of nowhere, last Saturday morning, my mother started to decline sharply cognitively, leading me to initially believe that she probably had another urinary tract infection (UTI), as they sometimes start with cognitive decline nowadays rather than the usual urinary burning and changes in color and smell.Given her rapid decline, however, it became clear that something else was going on. I opted to take my mother to the ER rather than the local urgent care clinic.
Shortly after arriving in the ER, my mother suddenly went into what appeared to the doctor, two nurses and me as a massive stroke. After a thorough neurological evaluation in the midst of this horrible experience as well as lots of questions directed toward me, a stroke was ruled out and an infection was suspected as the cause of what can only be described as a really scary psychotic episode with stroke-like symptoms.
Blood and urine tests showed no infection and CT scan and x-rays were negative, which led us to focus on the possibility of a severe reaction to the Rytary, the only new medication my mother was taking, even if she had been on it already for almost a month at that time. The third dose of Rytary was withheld that day and, by evening, my mother was starting to resemble her former self a little bit again.
The next day, with Rytary dosage reduced, a similar, although not quite as frightening (although still long-lasting) situation arose at almost the same time as the prior day's episode. More of the same tests were run and, again, a stroke and infection were ruled out. Rytary was now strongly suspected as the cause, especially since the timing of both severe reactions hit their peak at 2 pm, an hour after the second daily Rytary intake (of three). Each day's episode lasted for about five or six hours. I immediately insisted on on the discontinuation of Rytary, with which the neurologist agreed, and no PD meds were again administered for the remainder of the day.
The next day (Monday), my mother was put back on her prior Carb/Levo regimen, and no further episodes have occurred since then.
My mother, who remembers little of her ordeal, is now back at her assisted-living community but will need a few more days to return to her usual cognitive self (dementia-free but with some PD-related mental processing delay issues) and A LOT of physical, occupational and speech therapy needed to get her back to pre-hospitalization abilities. [As for me, I'm exhausted from the many stresses of the past week's ordeal, especially the fear of losing my mother to a massive stroke, as well as the usual hassles with inconsistent and inaccurate medication distribution by the hospital.]
THE LESSON: According to the first neurologist last Saturday at the time of the first episode, people like my mother who are on a high dosage of Carbidopa/Levodopa for a long period of time should NOT be put on Rytary. My mother had been taking Carb/Levo 25/100 from February 2007 until last month (January 2015) at 12.5 tablets daily between 6:30 am and 9:30 pm. Clearly, she was NOT a candidate for this drug.
I hope that by sharing our experience here, some of you with -- or caring for someone with -- advanced PD may be able to avoid what we went through over the course of the past week.
Sometime last fall, I'd inquired of other members of this PD group re: feedback about Rytary. It being a new PD drug, there was little such information here and elsewhere on the Internet. After several months of urging my mother to switch from Carbidopa/Levodopa 25/100, on which medication my mother had been since 2007, my mother and I reluctantly agreed to give Rytary a try.
My mother didn't seem quite her usual self after making the switch in early-January but her neurologist asked us to give it a bit more time. Last week Wednesday, at our most-recent neurology appointment, we noticed a slight tremor in her hands.
Then, out of nowhere, last Saturday morning, my mother started to decline sharply cognitively, leading me to initially believe that she probably had another urinary tract infection (UTI), as they sometimes start with cognitive decline nowadays rather than the usual urinary burning and changes in color and smell.Given her rapid decline, however, it became clear that something else was going on. I opted to take my mother to the ER rather than the local urgent care clinic.
Shortly after arriving in the ER, my mother suddenly went into what appeared to the doctor, two nurses and me as a massive stroke. After a thorough neurological evaluation in the midst of this horrible experience as well as lots of questions directed toward me, a stroke was ruled out and an infection was suspected as the cause of what can only be described as a really scary psychotic episode with stroke-like symptoms.
Blood and urine tests showed no infection and CT scan and x-rays were negative, which led us to focus on the possibility of a severe reaction to the Rytary, the only new medication my mother was taking, even if she had been on it already for almost a month at that time. The third dose of Rytary was withheld that day and, by evening, my mother was starting to resemble her former self a little bit again.
The next day, with Rytary dosage reduced, a similar, although not quite as frightening (although still long-lasting) situation arose at almost the same time as the prior day's episode. More of the same tests were run and, again, a stroke and infection were ruled out. Rytary was now strongly suspected as the cause, especially since the timing of both severe reactions hit their peak at 2 pm, an hour after the second daily Rytary intake (of three). Each day's episode lasted for about five or six hours. I immediately insisted on on the discontinuation of Rytary, with which the neurologist agreed, and no PD meds were again administered for the remainder of the day.
The next day (Monday), my mother was put back on her prior Carb/Levo regimen, and no further episodes have occurred since then.
My mother, who remembers little of her ordeal, is now back at her assisted-living community but will need a few more days to return to her usual cognitive self (dementia-free but with some PD-related mental processing delay issues) and A LOT of physical, occupational and speech therapy needed to get her back to pre-hospitalization abilities. [As for me, I'm exhausted from the many stresses of the past week's ordeal, especially the fear of losing my mother to a massive stroke, as well as the usual hassles with inconsistent and inaccurate medication distribution by the hospital.]
THE LESSON: According to the first neurologist last Saturday at the time of the first episode, people like my mother who are on a high dosage of Carbidopa/Levodopa for a long period of time should NOT be put on Rytary. My mother had been taking Carb/Levo 25/100 from February 2007 until last month (January 2015) at 12.5 tablets daily between 6:30 am and 9:30 pm. Clearly, she was NOT a candidate for this drug.
I hope that by sharing our experience here, some of you with -- or caring for someone with -- advanced PD may be able to avoid what we went through over the course of the past week.
My mother is now in late-stage PD, struggling more than before, unable to make the much-hoped-for comeback from her frightening 2016 Rytary-related hospitalization. There has been one positive side effect from that 2016 ordeal that I want to share, although it does not alter my decision to not be placed on Rytary again.
My mother had awful back pain prior to the 2016 hospitalization, both from PD as well as, we believe, nerve interference from the second of two major back surgeries. (The surgeries stemmed from severe PD-caused scoliosis.) Amazingly, since her two psychotic breaks of this hospitalization, she has had only occasional back discomfort, all of it from the discomfort of sitting in her wheelchair all day. There has been NO more of the former back pain that had her taking morphine, Fentynal patches, and other meds. over the 10+ years leading up to the 2016 hospitalization. The psychotic breaks literally broke the nerve pain pathway between my mother's lower back and her brain.
In short, that was the one -- and the only -- positive effect of the Rytary hospitalization, but it's been a major improvement for my mother. Whereas I see all that she has lost and is losing in terms of abilities, she is surprisingly content with her life now that the pain is gone. (Thank you, PD apathy and Zoloft, which she has been taking for about three years now.)
My mother's neurologist still wants to try a lower dosing of Rytary, but I remain reluctant. Maybe, just maybe, he can convince me when the Carbidopa/Levodopa ceases to work IF I can find proof that it's a overdosing problem that caused her horrible psychotic episodes in early-2016...