I am in contact currently with 3 hu people that are seriously messed up on rytary...i think its a kindling effect or what i call stacking. I believe we are not only overdosed on rytary but it also is having some strange psychiatric effects common to us 3. please check the link for full understanding, Please see below i have found these reports from others online.
Spun Out of Control On Rytary and Shortage of Neuropsychiatrist is a Dangerous Development
pindky
By pindkyJuly 20, 2018
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Most patients in my situation are not withdrawn from drugs.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.
An excellent public service announcement. Levodopa -induced dystonia can happen with any levodopa medication. There have been several reports of this, here on this site, recently. Of great concern – the MDs involved did not seem to be aware of this potential adverse effect. I checked the literature - there are a few reports to be found if you look for them, but no prominent warnings.
I've been on Rytary for a year or so. It seems to work for me. That is, no dyskinesia when it wears off. I also take duloxetine which seems to have stopped my "suicidal ideation" The docs have never offered DBT. I'm in North Stonington, CT.
I didn't address your question, "Was the "suicidal ideation" a consequence of the transition to Rytary?"
I think it had nothing to do with my medications. Three years ago I was diagnosed with Parkinson's Disease. I had lived in Wyoming for 35 years. The diagnosis caused me to leave my job of 35 years and sell my home of 35 years and move a thousand miles to Connecticut. That led to depression and 'suicidal ideation' . Then the neuro decided I should not drive anymore and that made things go from bad to worse-than-bad.
Ultimately Duloxetine put me on an even keel and stopped me for thinking about suicide.
I was astounded when I read your account of overdosing on Rytary because your experience was almost exactly like mine. I was taken twice by ambulance to the hospital because of difficulty breathing. Multiple tests all came back negative and so I was told that I was having panic attacks. I had a psych consult because they thought that I was a nutcase. The psychiatrist however, found no mental health issues with me and told me that I did not have panic attacks because the episodes lasted too long, much longer than the 20-30 average minutes of panic attacks. Through no assistance by my. neurologist (who I left), but by my new neurologist, it was determined that I was overdosing on the Rytary, taking 15 daily. It took me a month to detox from that med and like you said, it was hell. I currently am on five Sinemet and four Pramipexole daily.
This sounds fairly similar to hubby’s experience on the slow release madopar .except he didn’t have problems breathing but did once have his throat constricting that made him panic that it might stop him breathing. Once off it and back on the lower dose of madopar tablets he he just so good now.
I combine C/L IR with ER, I started this as a result of c/l wearing off too soon and it’s worked pretty well. I get slight dyskinesia in the evening (I don’t notice it until I’m in front of the mirror brushing my teeth.) Is this a slippery slope I’m on? Are there any early indicators of problems down the road?
I do get end of dose anxiety, or rather while waiting for the next dose to kick in, especially when I’ve not been careful with protein. One of the reasons I started combining. Anxiety and depression were previous to my PD diagnosis by many years, and I take meds for that already, but didn’t feel fully ok until I started c/l. so I think it’s a wearing off symptom. But I am concerned that it will become more prominent again with progression.
I have no interest in Rytary because I’ve heard the transition can be hard and lengthy. This makes me even more wary.
my dr just abruptly dc'd the sinemet and started the rytary, im concerned that as pd gets worse, how they will manage adjunct therapies or i should say how i will manage adjunct meds if im on it. cheers rebtar....
i dont know what to say about it other than the fact i know for sure .....i was overdosed on it and it apparently has a very narrow therapeutic range. And being messed up on it was pure hell. hang tough.
Wow. So the reason we took my husband to the hospital recently was because he woke up having a panic attack and trouble breathing. Pretty sure the trouble breathing caused the attack. The paramedics said that was what was happening also probably because of the pain from fracturing his L1. He's on 95mg and 245mg of Rytary 4 times a day. I just posted about wondering if this was too much for him! Now what? Hello MDS???
dosing more often than 3x in a 24 hour period...can result in "stacking " the remaining dose thats still in your body on top of the new dose...hang tough.
Wow. Was I happy to find your post! I started Rytary about 1 1/2 years ago. I had been taking 2 IR c/l 25/100 four times a day. I was also on 2mg ER Ropinirole. I was to take it at night, because it made me sleepy and dizzy. I also took ER c/50-200 mg at night, to help me sleep longer.My Dr. suggested the Rytary. She ordered the 48.75/195mg. The dosing for this is: 3 capsules, 3 times a day. That meant I was taking the dose 5 hours apart. We started with just 1 pill 3x day, then worked up to the full dose. I was still taking the Ropinirole and the ER c/l 50/200, It was thought to help me sleep. Parkinson’s has affected my sleep cycles. I had bad nights and not-so-bad-nights and really bad nights.
Rytary worked good for the first 6 months. I then began to feel the doses weren’t lasting long enough. At about 3.5 hours after dosing, I would begin to feel this horrible tightness in my chest. The doctor told me that my Parkinson’s was advancing, so the dose wasn’t lasting as long as it should. She said I was having an emotional reaction to the wearing off. Her solution was to move the dosing to 3.5 hours, and add another 3 pill dose. That’s 12 Rytary a day.
I began to not feel good. I began to feel afraid. I became very emotional. I interpreted what people said and did in a negative way. I could not multi-task as before. I could not complete tasks very well, and had a feeling of being over-whelmed all the time.
I contacted my Doctor. She said was just my Parkinson’s advancing. I’ve had Parkinson’s for 10 years. I am/ had been very active. I rode my bicycle or hiked most every day.
Then it happened. It was the end of April. I woke up at 3:00 a.m. with a full blown panic attack. Felt I couldn’t breathe. I struggled with it for about 2 hours, then called an aid car. I ended up at the ER. I told the Dr. I felt like I had been overdosed with my medication. I learned here at the ER what a panic attack was. I learned a new term. High Anxiety. They gave me Adivan. I called my Doctor and explained what had happened. I added up all the mgs of Levadopa during a 24 hour period and came up close to 2,700. I told her I felt I was taking too much. She got very upset and told me to go see a psychiatrist. It was obvious I had mental problems. I was blaming the Rytary.
In the course of the next 2.5 weeks, I had 5 more panic attacks. They lasted 4-5 hours each- about the amount of time it took to get the last dose of Rytary through me. But I discovered this by keeping careful track of the dosing and when the attacks occurred. It was when the last attack occurred, that I saw the pattern. The last attack was so bad, I went to the ER again. They kept me overnight and told me I had to work this out with my Doctor. Over the last few months, my ability to sleep had grown worse and worse. I was sleeping 2-5 hours a night. I was a mess.
When I got home I stopped taking the last dose of Rytary. Back to 3xs a day. My c/l intake was cut 1/3. The panic attacks stopped immediately. I also stopped all the nighttime meds. My brain became paranoid of Rytary. My doctor said I could go back to IR c/l , but to continue with the Rytary 3xs day for a few more weeks. I literally went through a detox. I spent two weeks at my son’s while this was happening. I was afraid to be alone.
I did go to a psych doctor appointment arranged by my P.D. Doctor. She proscribed Prozac and some ADHD medication for night. I took one Prozac and spaced out for 4 hours. That was the first and last of Prozac. I was prescribed Mirtazapine and then Trazodone to help me sleep. Neither worked because they doped me up during the day. I make my living as an illustrator. I must have a clear head during the day. My doctor told me I just have a high sensitivity to medication.
I am back on IR c/l 25/100. I must take it every 2.25 hours. I’m still having major sleep issues. I’m working on it. I have also been left with high anxiety, which starts to climb as doses wear off. I realize now that what I was describing to my doctor as a tightness in my chest was anxiety. I didn’t know the word then. I believe it was activated by Rytary overdosing.
Things are much better, but I am still struggling to find answers to what I was left with in the aftermath.
I know this is long, but it was as put by another writer “hellish!” Be very careful with that drug. I believe my doctor did not do the calculations correctly when she switched me. I was on too high a dose from the start.
My next appointment with my doctor is September 1st. I see her twice a year. I don’t believe this all to be her fault. It is hard to communicate PD symptoms to another. Our doctors here are often rushed. Too many patients, not enough doctors.
wow 2700mg/day levodopa! by pdr standards thats way too much. unfortunately this story is not unique and its a pattern with dr's to take any pd symptom increases or appearance and always always mostly always...increase pd meds..rarely do dr's consider you might be od'ing. they think that since pd is progressive that you will always need more pd meds instead of less. unfortunately alot of dr's lack a basic understanding of pd therefore it is incumbent upon us to take the reins with our illness...dr's rarely "listen" ...not all but its very common. i wish you the best of luck...illustrating is a cool job! i like to paint!...but im not good enough to make $ at it (chuckle)...good for you for tracking and seeing the pattern for what it is...the bad thing that ive noticed is that very often women and to a far lesser extent men are dismissed as having psych issues when things like this crop up. i see a shrink every week for 15 yrs to talk through issues like this. im a man and ive been told "its all in your head" several times and it really po's me! good for you for taking back your life ...literally ...the panic attacks are brutal!!! you hang tough Dixer! keep on illustrating!...cheeers!
This sounds very familiar to me as my husband has been on 1,950mg/day of levodopa in the form of rytary dosed at 2 pills 5 times per day and he is experiencing much the same as you described. Including trips to the ER for breathing problems and high blood pressure. The last trip to ER involved a neuro consult in which the neuro on call said he was under medicated for his PD. A subsequent visit to his MDS did not show that and his dr said that he doesn’t need more medication but rather its an anxiety disorder causing all of his symptoms and she won’t even consider that his distress could be induced by the rytary.
We’ve been around and around with her and psychiatry about this and the psychiatrist’s answer is to dope him up with so much medication all he does is sit in a chair all day. Either way he can’t even do the exercise that’s so important for slowing the progression of the PD and we’ve already lost years of precious time to these problems that seem to have no resolution. So I think we’re going to try reducing the rytary and see what happens. We’ve tried this before and it didn’t help much but it’s all we can figure out to do given the information we’re seeing here about similar problems others are having with this drug. Best of luck to you Dixer and thanks for posting your experience here.
That’s a very difficult story, and I thoroughly empathize. Like beehive 23, I am entirely off Rytary. I’m also back on IR card/Levadopa 25/100. I take 1.5 pills each time. It was the pharmacist who told me every patient has to find the optimal dose for them. Then you find the spacing. My dosing is every 2.25 hrs, but I’m in more control. If it wears off early because of exercise, I can take it sooner, or space it out a little more. It’s hard to build up a toxicity when it’s moving through your body that rapidly. We all develop a baseline of Levadopa, but mine is much lower now. Rytary has a very high baseline, especially when they move the doses closer together. My nephew has schizophrenia. It’s way too much dopamine-opposite of Parkinson’s. When I was over medicated I started having some of his psychotic thinking and behaviors. Just an interesting observation…
Thanks for sharing that Dixer. Interesting observation about the behavioral affects of too much dopamine. That explains some of the personality changes I’ll see from time to time.
Glad you’ve found a way to keep comfortable with flexible dosing of the IR C/L. That sounds very much like Dr. Ahlskog’s approach as well.
I had a full blown manic episode after taking Rytary. I had never experienced anything like that before I had to go back to taking my C/L…I’m taking so many pills per day! I’m more off than on. I’m seriously considering DBS.. I never thought I would have brain surgery but I’m pretty miserable.
I certainly understand being pretty miserable because I had severe dystonia in both feet. I opted for DBS in June 2022. It helped the dystonia. It gave me my life back.
Thanks for this update. My HWP was switched to Rytary, as he was not really doing well on C/L. I will keep an eye on for these symptoms. MD already reduced mid day dose and may reduce PM dose and see how he does. He explicitly said that he cannot take any traditional C/L with it.
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