Carbidopa / levodopa for Parkinson's Disease User Reviews

• Dot...
• Taken for 1 to 2 years
• April 2, 2014

"My mom just celebrated her 1-year anniversary on Sinemet, so I wanted to share an update to give anyone newly diagnosed hope. Her dose is now 4 tablets a day (25/100), which she takes at 9:00 am, 1:00 pm, 5:00 pm, and 9:00 pm. We increased from 3 tablets a day probably around month six, and she's been really doing well since then. No tremors, no obvious rigidity (or any Parkinson's symptoms at all), good appetite. Zero side effects from the Sinemet, which is why I say 'celebrated.' This is a remarkably effective and very affordable medication. Mom will turn 88 in May. Wishing everyone the success that we have had."

• Dot...
• Taken for 1 to 6 months
• March 28, 2013

"My mom has been on generic Sinemet for 8 weeks, and her improvement is remarkable. She's 86, and until the last 18 months, she had never taken any medication and was energetic and bubbly. She had a dramatic and fast onset of Parkinson's, and prior to starting this medication, she was almost completely debilitated. She looked like she was slowly dying. She lost a lot of weight, was shuffling, stooped in posture, exhausted, and confused. We took her to a neurologist who started the Sinemet slowly over a series of three-day incremental increases, and she started showing improvement almost immediately. She now takes 1 tablet three times a day (25/100). Zero side effects. And, now, two months into this, she's 75% back! It's a miracle!"

• Ear...
• Taken for 6 months to 1 year
• September 25, 2020

"At 44 years old, I started Rytary 23.5/90, 3 pills 3 times a day. This was a massive overdose. This caused a manic (invincible) state. I am NOT manic-depressive. I knew something was wrong when I was mean to my wife, whom I have never disrespected before, ever. It took me 40 years to find her, and this drug not only removed my impulse control but also brought out aggressiveness. As a former US Marine, my self-discipline was simply absent. So, I bought a digital scale capable of weighing in mg. Most of the capsules weigh 330 mg, after removing the gel capsule, most pills contain 240 mg of 'beads.' About 1 in 30 pills have about 50% more, up to 340 mg. This pill should contain 118 mg of carbidopa levodopa. What is in the other 122 mg? This explains the unpredictability of Rytary. I now take 1 pill after checking the actual weight at bedtime, and I can wake pain-free."

• Dot...
• July 18, 2013

"I wanted to share an update on my mom's status with the hope this information helps others. My mom's been on the Sinemet now for five months. She's still taking 3 tablets a day (25/100) -- one in the morning upon rising; one early afternoon and one in the evening. She's had no side effects that we are aware of, and up until the last three weeks has been really doing well. Now she's starting to have increased fatigue and some confusion -- not terrible, but noticeable. I'm talking to her neurologist in two weeks to see if she needs a small increase in her dose. He said her current dose (1 pill three times a day) is low, and there is room to increase gradually. Mobility is still excellent and tremors are barely there."

• Ice...
• Taken for less than 1 month
• September 9, 2018

"I have been on this medication for 2.5 days. Within the first 6 hours, I had a profound change for the better. I felt like I was no longer trying to move my body and mind through jello. My mind is clearer, and my body feels freer. I feel like I'm back! I am praying that this will continue!"

• Dav...
• Taken for 1 to 6 months
• August 4, 2015

"Been taking Rytary for 5 months. First, was on 3 pills 3 times a day and did really well. The last 2 months, it has been 3 pills 4 times a day. I have been feeling agitated, nervous, seeing things that are not there, and thinking my home is the place I used to work. I am afraid of hurting my wife and have terrible night dreams. I feel I have nowhere to turn for help. I only see a PA when I go to the doctor, and she just gives me more medicine, some of which has very serious side effects, and has recommended DBS. These symptoms are a daily occurrence, and I hope it is not the drug."

• Mis...
• September 18, 2015

"I am a 63-year-old female and have had Parkinson's for 3 years. Sinemet worked well for me, but I was beginning to have downtime between doses. My neurologist started me on Rytary, and I took it for 2 months. Rytary gave me more energy and less downtime between doses but had horrible side effects. I tried adjusting my dosages, but no improvement. I was unable to sleep, had nausea and vomiting, lost significant weight, had chills, and my hands were shaky but sweat ran from my face. My temperature after the last dose of the day was 96.9. Then, I started having chest pains. I take Azilect, so that may have caused the Rytary to have a stronger effect. I was in bed most of the day. Switched back to Sinemet with doses every 3 hours and feel great!"

• Ban...
• Taken for less than 1 month
• March 12, 2015

"I have been taking Rytary for the last 9 days, and it worked great at night since I was sleeping. But it worked about 30%-40% for me as soon as I put something in my mouth. I had a small apple yesterday and took my pills 2 1/2 hours later, and I was stiff, with almost no movement for the next 2 hours. Today I had a very light veggie lunch at noon, took Rytary at 3 PM which worked about 30%, and I finally decided to take my Parcopa at 6 PM on top of Rytary! I would vote for Rytary at night only."

• 54 ...
• Taken for 1 to 6 months
• June 14, 2015

"I've been on Rytary for 6 weeks. I take it 3 times a day, 3 pills at each dose. It is unpredictable at times. There are days that I get a full 6-hour benefit without wearing off. But food creates a problem with its effectiveness. There are other times that I'm on an empty stomach, but it does not allow me to have mobility until it kicks in. Other times it kicks in right away, then there's a period not working so well, and then it works again at the 5th hour. I'm really studying all the variables such as my sleep, food intake, and stress levels. If I have stress, Rytary ceases to work. Perhaps I need to increase my dose. I'll discuss with my doc this week. But overall, it has been much better than Sinemet, which gave me 2 1/2 hours."

• Grr...
• Taken for 6 months to 1 year
• December 30, 2016

"I have been on Rytary for 10 months. At first, it worked well: 2 pills (23.75 mg, 95 mg) 3 times a day with one at bedtime. Since the 6th month, I have had increasing dyskinesia and muscle cramps. In November, they were unstoppable, and I had to go to the hospital for a relaxant IV. (The ER did not know what the heck to do). I was screaming with pain. I am trying different doses and times, but I believe the delivery is defective and uneven. I have no control over the delivery. I do not think my Parkinson's disease could have progressed that fast in 4 months. I was 'stable' and in control on Sinemet: 1/2 S. 25/100 every two hours for a total of 450 to 500 mg a day. I was sleeping well. Now I am bent over, in pain, never knowing how I will be."

• Kbs...
• Taken for less than 1 month
• August 31, 2016

"My mom was switched to Rytary to decrease off periods. She used to be able to walk one mile. At first, the Rytary seemed great, but then her neurologist couldn't get a dose that worked consistently. The manufacturer says absorption is 70%, her neuro says 50%, but sometimes it was 0%, and when we would add some immediate release levodopa, she would get horrible dyskinesia. She could barely walk, and we've switched back to old meds with little improvement. I regret ever switching!!"

• gar...
• Taken for 1 to 6 months
• April 19, 2017

"I took Rytary for approximately 1 month in 2016. The worst experience in the 14 years I have had Parkinson's disease. My neurologist tried different doses at different times of the day, it would only work with Sinemet to help kickstart at first. After about a week, it was no longer predictable. Several times I had to crawl because I could not walk. Once I got up to go to the bathroom but could not cross the threshold and had to urinate on the floor. The last day my neurologist asked me to try 4 capsules at once as a last resort. It was 2 hours before I could get out of bed! I still feel the effects to this day."

• Eri...
• Taken for 2 to 5 years
• August 12, 2020

"I started taking Rytary 3 1/2 years ago because the increased doses of Sinemet were beginning to cause dyskinesia. For me, it's been terrific! The slow release really works, and the dyskinesia happens very seldom, and when it happens, it's mild. Since I started, the dose has increased, and I have gone from 3x per day to 4x per day. So, it works for me. Many of the other criticisms I have read are simply due to the natural progression of the disease, not to mention certain meds work for some PWP's and not others. It's just like Parkinson's itself, almost everyone experiences different total symptoms. Bottom line, if you respond well to Sinemet and the doses are starting to kick in dyskinesia, I highly recommend Rytary."

• Gin...
• February 23, 2021

"My wife started taking Rytary three weeks ago. Results: able to walk without tremor in legs, no falling, gained appetite, now eating three times a day instead of one, does not sleep all afternoon. Rytary has changed her life dramatically for the better. First improvement she has had in three years. GREAT!!"

• Woo...
• March 19, 2018

"It stops tremors in its tracks. I know because I have Parkinson’s-like symptoms, and about four years ago, I had started the tremors or shakes. My ex-wife now made an appointment for me with a neurologist, and he prescribed me Sinemet 25/100s three times daily. But I still had a little tremor in my hands, so he added one more pill per day to my regimen of three per day to four per day, and that’s when the tremors stopped completely!!!"

• No...
• Taken for 2 to 5 years
• October 31, 2017

"My wife was placed on Rytary and was doing fine. We switched doctors, and she was taken off Rytary and was given Sinemet, and she went downhill to the point we had to cancel a vacation. We switched her back to Rytary and will not go back. If you have Parkinson's, try Rytary, you may do much better."

• and...
• Taken for 1 to 2 years
• October 28, 2019

"I have been using Rytary for a year. 1 pill 6 times a day. The past 2 months, I have had hallucinations, falling asleep at breakfast and all during the day. Not able to function very well, falling asleep with hot or cold drinks in my hand and not knowing I was spilling liquid everywhere. The hallucinations are very real, vivid, and frightening. Rytary is not helping me physically at all. Up until 2 months ago, it was great, and now it has turned against me!"

• The...
• March 2, 2021

"My father was diagnosed with Parkinson’s disease over 20 years ago (currently 71 years old). He has a DBS, suffers from dyskinesia, tremors, and gait. He’s been on 245 mg of Rytary 5 times a day for the past year. He’s had an unbelievably great response to Rytary (very little dyskinesia, minor tremors, and almost no gait issues for the past 12 months). This drug has changed his life, and I’m very thankful for it."

• Har...
• Taken for 6 months to 1 year
• February 7, 2022

"I started on Sinemet about a year ago for stage 2 Parkinson's. Since I have been on this medication, my tremors and shuffling gait have improved dramatically. Before starting, my body movements were virtually uncontrollable. Now I can function almost normally. Sinemet also allowed me to return to work after being unable to work for about 8 months. Granted, I cannot do the same job I was doing (nurse), but I am able to work in an administrative function. A huge weight was lifted because of Sinemet..."

• nur...
• Taken for less than 1 month
• March 29, 2017

"The initial results seemed to improve at times, compared with Sinemet, however, the side effects had a devastating impact on my family relationships. Out of nowhere, I became a compulsive gambler. Other issues of sleeplessness, hypersexuality, anxiety, just to name a few. The minute I stopped using Rytary, all these issues went away. To be fair, impulse control issues were a concern with the regular Sinemet product, but I was always able to stop the above negative behaviors. Rytary's warning label spells out these side effects, so anyone with impulse control problems should be on guard when trying this product."

• Gig...
• Taken for less than 1 month
• January 2, 2020

"I never took illegal drugs, but my experience was like I heard when people took LSD. I had horrid hallucinatory dreams, sweating, depression, increased anger, lack of impulsive control, weight gain, all within two weeks. Having Parkinson's is better than the side effects I had with this drug."

• Anonymous
• June 3, 2017

"I've been taking Rytary since Feb 2016. I settled in on taking 3 capsules of Rytary 48.75 mg/195 mg 4 times a day and 1 capsule of Rytary 61.25 mg/245 mg at bedtime. Initially, this dosing combination allowed me to achieve virtually no downtime until I experienced some serious stress, which eventually led to 4 to 6 hours of off time a day, as well as significant dyskinesia between doses, especially as the day wore on. Next, I was favorably evaluated and underwent DBS surgery in Feb 2017. With stimulation, I'm still on the same daytime dose, but have stopped taking 2 capsules of Rytary 48.75 mg/195 mg at bedtime. With virtually no downtime and no noticeable dyskinesia, Rytary has worked very well for me during this time. With DBS, I hope to reduce daily Rytary."

• You...
• Taken for 2 to 5 years
• November 13, 2017

"I've been on Rytary since 2015 and at times was on 5 pills 4 times a day of the 48.75-195 dosage. Partial neuroleptic seizures were a result, mild psychosis, paranoia, anxiety, mood swings, depression, dyskinesia, dystonia, impulse control, sleeplessness, among others, all things I've dealt with at some point along the way. I'm now on 3 pills 5 times a day, with a small dose of 2 mg Artane in between 4 times a day. I have not been able to really lock down whatever makes it work. It is wildly inconsistent, but when it's on, it's on, and I get some normal time. Certain strains of medical marijuana help increase the efficacy of this drug, kicking in sooner and can give me up to 6-7 hours of normal time instead of 1 hour to kick in and 1-2 hours normal time."

• mic...
• September 8, 2009

"I was placed on Sinemet CR (1 x 4 times daily) as a result of Sinemet 'wearing off.' I am a carer for my wife, who is extremely disabled, thus I needed a medication that allowed me to still manage her needs whilst controlling my Parkinson's. CR has worked, and although I have episodes of trembling as I get nearer the end of a 6-hour medication cycle, I am very happy with it as I am able to tend to my wife's medical needs and carry out cooking duties as required."

• Pau...
• Taken for 1 to 6 months
• February 18, 2018

"Since cutting my dosage of Mirapexin, which was causing me to sleep excessively, and using Sinemet, I feel a lot better. I had also gained 12 kilos while taking Mirapexin, which seemed to give me a sugar craving. I am not up to the full dose of Sinemet yet, but I am optimistic that I will lose the weight I have gained. Motor skills that I was told should return haven't as yet. Paul, 57, Sports Teacher. Brighton, England."