User Reviews for Carbidopa / levodopa to treat Parkinson's Disease
Also known as: Sinemet, Rytary, Sinemet CR, Atamet, Duopa, Parcopa
Carbidopa / levodopa has an average rating of 6.3 out of 10 from a total of 44 ratings for the treatment of Parkinson's Disease. 50% of reviewers reported a positive effect, while 32% reported a negative effect.
Sinemet (carbidopa / levodopa): “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 9:00am, 1:00pm, 5:00pm and 9:00pm. 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. God bless.”
Rytary (carbidopa / levodopa): “At 44 yrs old I started Rytary 23.5/90 3 pills 3x a day. This was a massive overdose. This caused a Manic(invincable) state. I am NOT Manic depressive. I knew something was wrong, when I was mean, to my wife, who 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 weight in mg. Most of the capsules weigh 330mg, after removing the gel capsule, most pills contain 240mg of "beads". About 1 in 30 pills have about 50% more, upto 340mg. This pill should contain 118 mg of carbadopa levadopa. What is in the the other 122mg? This explains the unpredictability of Rytary. I now take 1 pill, after checking actual weight at bedtime and I can wake pain free.”
Sinemet (carbidopa / levodopa): “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!”
Sinemet (carbidopa / levodopa): “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 taking 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.”
Rytary (carbidopa / levodopa): “I have been on this medication for 2.5 days. Within the first 6 hours. I had a profound change for 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!”
Rytary (carbidopa / levodopa): “My wife started taking Rytary three weeks ago. Results: able to walk with out 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!!!!!!!”
Rytary (carbidopa / levodopa): “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 no where 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.”
Frequently asked questions
- What foods should be avoided when taking levodopa?
- How long does it take carbidopa levodopa to work?
- Is Rytary better than Sinemet?
- How often should carbidopa/levodopa be taken?
Rytary (carbidopa / levodopa): “I started taking Rytary 3 1/2 years ago because the increased doses of Simenet 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 Simenet and the doses are starting to kick in dyskinesia, I highly recommend Rytary.”
Rytary (carbidopa / levodopa): “I have been taking Rytary for the last 9 days, and it worked great at night since I was sleep. 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 vegii lunch at noon, took Rytary at 3pm which worked about 30%, and I finally decided to take my Parcopaat 6pm on top of Rytary! I would vote for Rytary at night only.”
Rytary (carbidopa / levodopa): “My father was diagnosed with Parkinson’s disease over 20yrs ago (currently 71yrs old). He has a DBS, suffers from dyskinesia, tremors, and gait. He’s been on 245mg 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 thank for it.”
Rytary (carbidopa / levodopa): “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.”
Rytary (carbidopa / levodopa): “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 down time 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 Ivey hands but sweat ran from my face. My temp after the last dose of the day ran 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 Sinement with doses every 3 hrs and feel great!”
Rytary (carbidopa / levodopa): “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 and 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!”
Rytary (carbidopa / levodopa): “I have been on Rytary for 10 months. At first it worked well: 2 pills (23.75mg,95mg) 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 PD disease could have progressed tha t 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 know how I will be.”
Rytary (carbidopa / levodopa): “I took Rytary for approximately 1 month in 2016. The worst experience in the 14 years I have had Parkinson's disease. My Neuro 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 the bathroom but could not cross the threshold and had to urinate on the floor. The last day my Neuro 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.”
Rytary (carbidopa / levodopa): “My wife was placed on Rytary and was doing fine. We switched doctors, and she was taken off Rytary and was give Sinemet and she went down hill 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.”
Rytary (carbidopa / levodopa): “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!!”
- Can carbidopa/levodopa cause high blood pressure?
- What is the difference between carbidopa, levodopa, and Rytary?
- How long does it take for Rytary to start working?
- How long does Rytary stay in your system?
Rytary (carbidopa / levodopa): “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 parkinsons is better than the side effects I had with this drug”
Sinemet (carbidopa / levodopa): “It stops tremors in its tracks I know bc I have Parkinson’s like symptoms and about 4 years ago I had started the tremors or shakes and my ex wife now made an appointment for me with a neurologist and he had 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!!!”
Rytary (carbidopa / levodopa): “The initial results seemed to improve on 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, hypersexaulity ,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 warning label spells out these side effects so anyone with impulse control problems should be on guard when trying this product.”
Rytary (carbidopa / levodopa): “I've been taking Rytary since Feb 2016, I settled in on taking 3 capsules of Rytary 48.75mg/195mg 4 times a day & 1 capsule of Rytary 61.25 mg / 245 mg at bedtime initially this dosing combination allowed me to achieve virtually no down time 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 day dose, but have stopped taking 2 capsules Rytary 48.75mg/195mg at bedtime with virtually no down time and no noticeable dyskinesia. Rytary has work very well for me during this time. With DBS hope to reduce daily Rytary”
Rytary (carbidopa / levodopa): “I've been on Rytary since 2015 and at times was on 5 pills 4 x a day of the 48.75-195 dosage. Partial neuroleptic seizures were a result, mild psychosis, paranoia, anxiety, mood swings, depression, dyskenisia dystonia, impulse control, sleeplesness, 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 2mg artane in between 4 x 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. Kicks in sooner and can give me up to 6-7 hours of normal time. Instead of 1hr to kick in and 1-2 hrs normal time.”
Sinemet (carbidopa / levodopa): “I have been taking Sinemet for more than 6 months. I started with 1 pill every meal (3 times a day) and then I went to two pills with every Meal. I feel Okay, except that I am having problems with my eyes. I see double sometimes. Furthermore, I have been afflicted with Steven-Johnston Syndrome, since the age of 19 years old. This causes Dry Eyes plus I have eye lashes going In ward, which does not help matters. I rated Sinemet as 8 but I am sure Sinemet is good for me since I no longer have the symptoms associated with Parkinson disease. My problems seem to be associated more with eyes”
Rytary (carbidopa / levodopa): “Diagnosed with PD at age 62. I am now 78. I take 8 capsules of Rytary 245 daily and supplement with carbidopa/levodopa 25/100 as needed. It is the best extender so far. I was getting too much dyskinesia from entacapone. The cost is very high with my medicare advantage plan. Over $500 per month my cost when in the drug coverage gap.”
Sinemet CR (carbidopa / levodopa): “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 which 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 an 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.”
This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare professionals.
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