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.
BT
BT
Sand, I hope your mom is doing better. Did they switch her back to Carb/Lev yet? I had great hopes for rytary and frankly initially it was working well for me but the increase seemed to set off new things. Good luck to you and your mom I will be praying for her...
Prior to my mother's February 6 trip to the ER and hospital admission, she was doing quite well cognitively and, physically, she was walking via walker with me or an aide by her side for when she began to lose her balance a bit while walking. We were able to go places together via my car, too. For at least four years, despite needing assistance with many ADL's (activities of daily living), she was still been able to feed herself, brush her hair and teeth, wash and lotion her face, and carry out other basic functions.
My mother was released from the hospital after almost a week, during which time she was completely bedridden and unable to do anything, including feeding herself and the other basic ADL's she had been able to do prior to the hospitalization. Despite having been returned to Carb/Levo again after the second day's psychotic episode from the Rytary in the hospital, she remained helpless physically and "out of it" cognitively upon discharge.
It took two weeks to get physical, occupational and speech therapy started again. Therapy has been a struggle for her, especially since her hospitalization decline was worsened by cognitive decline resulting from a UTI that she brought home with her from the hospital. A few days after the last of the 10-day antibiotic regimen, she was symptomatic yet again. And, so, days turned into weeks... At this time, too, on-going medication discrepancies and lack of timely medication distribution at the ALF attributable to nursing staff changes, which now also included problems with her Carb/Levo and Amantadine intake, made "bouncing back" impossible.
Doing even the most basic ADL's has been very difficult; concentration and memory, too, seem to be an issue now. Because she wasn't making the continuous improvements required to qualify for continued therapy under Medicare Part A, she was discharged first from OT after about two weeks, then PT and, lastly, ST a couple of weeks ago. Sadly, she remained wheelchair-bound by the time PT ended.
Yesterday and today, my mother was evaluated for PT, OT and ST under Medicare Part B (home health), which therapies, thankfully, will start this upcoming week. With meds now being given better again these past two weeks (timeliness as well as dosing), especially her PD meds, I'm hopeful that my mother will start to make better progress and experience more improvements again. And, so, we are hopeful...
The bright light in all this is that my mother HAS made some improvements with ST in recent weeks, specifically, with respect to swallowing. This enabled her to undergo another Modified Barium Swallow Study Under X-Ray this past week to check on her prior silent aspirations. She did so well that she is being upgraded from the pureed diet and nectar-thickened fluids (both of which she's been on for more than a year because of silent aspirations) to mechanical-soft diet and regular fluids. That was much-needed good news...and, for me, rather surprising since she hardly speaks anymore and, when she does, it's a mere whisper.
And, so, we take things one day at a time, as we've gotten used to doing for years now, always hopeful for better days amid the bad. As for Rytary, despite my mother's neurologist wanting to try again with a lower-dose Rytary, I have no intentions of agreeing to my mother trying it again.
signed:......not looking for a cure.....happy with the cards I've been dealt....
BT
BTW, I read your posting re: the chemical make-up of Sinemet and Rytary the day of my last post and, like you, am puzzled in light of my mother's severe adverse reaction to Rytary after years of being on carbidopa/levodopa which, for her, was a life-saver in so many ways and without any side-effects...well, unless one counts dyskinesia. Definitely odd.
BT
Do not take RYTARY with an antidepressant medication class known as nonselective monoamine oxidase (MAO) inhibitors because high
blood pressure can result.
Patients taking RYTARY can also experience hallucinations (unreal visions, sounds, or sensations) or abnormal thoughts and behaviors (such
as excessive suspicion, believing things that are not real, confusion, agitation, aggressive behavior, and disorganized thinking). If you have
hallucinations or abnormal thoughts or behaviors, talk with your healthcare provider.
Some patients taking certain medicines to treat Parkinson's disease have intense urges to gamble, increased sexual urges, other intense
urges, and the inability to control those urges. If you or your family members notice that you are developing unusual urges or behaviors, talk
to your healthcare provider.
Tell your healthcare provider if abnormal involuntary movements appear or get worse during treatment with RYTARY.
Tell your healthcare provider if you have ever had an ulcer, because RYTARY may increase your chances of having bleeding in your stomach.
Tell your healthcare provider if you have glaucoma, because RYTARY may increase the pressure in your eyes.
yadsa yada....but I still suspect that the reformulation of rytary is unwarranted in most cases and results easily in od. I mean,,,,how many docs check your sinemet blood levels...they really cant effectively....this begs the question......do extended release types of reformulations buildup in you system resulting ultimately with a possible overdose.....the docs cant check od and they up folks meds anytime there are issues....rarely do they decrease unless you push them or get dbs suck as hisknobs....
BT
BT
The most common side effects that may occur with RYTARY include nausea, dizziness, headache, sleeplessness, abnormal dreams, dry
mouth, abnormal involuntary movements, anxiety, constipation, vomiting, and low blood pressure upon rising. Rise slowly after sitting or
lying down for a prolonged period....................these are the "MOST COMMON SIDE EFFECTS".....yikes it seems unfortunately that most folks struggle with meds more than they do with pd......or start to at some point.....
BT
PT and OT are still underway, with my mother now making some improvements with transferring (bed to wheelchair, wheelchair to chair and toilet, and the like) and even walking a bit again.
Despite initial hope after doing so well with the modified barium swallow study, my mother remains on pureed foods and nectar-thickened fluids. According to her speech therapist, she is too inconsistent with her eating and swallowing to get back to mechanical-soft foods and regular liquids without supervision.
Cognitively, my mother has not been her former self, meaning that she has suffered cognitive decline from her severe adverse response to Rytary from which she has not come back. In the past two weeks, she has shown signs of increased memory loss and even some delusional thinking. I am seeing signs, too, that she is having difficulty telling time now, too.
Is it all the Rytary? I don't know, probably not, but I'm sure it played a significant role in my mother's sharp decline in recent months and, from what I still see, the damage is not reversible despite my hopes and prayers that it be so.
My Husband of 26 years passed away last week. He started Rytary in April 2014, and it controlled his tremors in right hand and foot. Mind you , he has had Parkinson's for over 20 years, and worked until 2012. I definetly believe that Rytary was the underlying cause. From clarity, confusion almost immediately but did help with the exterior symptoms. As a independent man, that was important. Our neurologists of over 12 years had retired at almost 90! Dr Richard Tyler Boston, the greatest! He never would have put him on this drug. Stay on regular Sinimet, please . My husband was still driving, walking etc UNTIL Rytary. He had a stroke and was at the neurologists 2 hours before saying everything was fine. We were complaining of restless leg and arm pain which they said was normal. His blood pressure top number was under 110 which never in 26 years was ever that low and I mentioned it and they weren't concerned. I believe that within 1-2 years they will recall this drug. I will be hiring an attorney to look into this because as a wife/ caregiver , the immediate decline from the switch to Rytary, and doctors insisting on this new drug when he was on 25/100 for 15 years plus. We only wanted to increase the original Sinimet. When your a caregiver of a loved one you watch every move to make sure they are safe. I knew something was wrong but they said it takes time when you add/subtract meds. I hope this helps someone else . I can't bring him back but please please don't do it!