Carbidopa / levodopa for Parkinson's Disease User Reviews (Page 2)

• R R...
• Taken for 6 months to 1 year
• January 20, 2017

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 Stevens-Johnson Syndrome since the age of 19 years old. This causes dry eyes, plus I have eyelashes going inward, which does not help matters. I rated Sinemet an 8, but I am sure Sinemet is good for me since I no longer have the symptoms associated with Parkinson's disease. My problems seem to be associated more with my eyes."

• Sar...
• Taken for 1 to 2 years
• March 18, 2022

Carbidopa / levodopa "It took a while to find the right dose of Rytary, so the start of this drug was pretty rocky. I take 3 of the 23.75/95 capsules 4 times a day and have no wear-off and no side effects! It's pretty amazing, considering with Sinemet and C/L CR, I was having nausea and frequent wear-off. If you can get through the frustration of having to deal with tremor, stiffness, slowness, and stuff while you're finding the right dose, it's so worth it when you get there. Rytary is smooth and just holds steady. No peaks and valleys. It just works and keeps working until the next dose kicks in. Awesome. I've never felt better!!!!"

• Tom...
• Taken for 1 to 2 years
• April 28, 2022

Carbidopa / levodopa "I was taking Rytary 3 capsules 3 times a day of the 95-23 mg, and I didn't realize how good this drug works until I could not afford it anymore. Being on disability, I depended on grants to pay for this drug, but I guess it's the sign of the times that there is no funding available anywhere, and it's back to generic carbidopa/levodopa and being stiff all day. So if you can afford this drug, I highly recommend it. It worked wonderfully for me when I was lucky enough to get it."

• Jim...
• Taken for 2 to 5 years
• December 18, 2023

Carbidopa / levodopa "I was first diagnosed at the VA with mild early stage PD. The doctor prescribed 100mg and 80mg of gabapentin. I felt sick and drowsy when I was taking 100mg in the morning, noon, and night with the gabapentin. I kept complaining that my life is gone, and all I do is sleep. In 2022, I ended up with RLS (Restless Leg Syndrome), and after 6 months of no sleep, I ended up in the hospital being treated for my deteriorating health and RLS. One day, I read a report that stated high doses of Sinemet CR could trigger RLS. Now I have both RLS and PD, and I found that Ropinerole helps with RLS, which it did. Finally, in 2023, I found an excellent doctor who prescribed it, and I was finally able to sleep better again. Now I also take 25mg/100mg of carbidopa/levodopa and gabapentin, but the damage was done, and I still deal with fatigue from Sinemet CR. It's not bad enough coming home with PTSD from Vietnam and other complications agent Orange."

• KMa...
• Taken for less than 1 month
• August 18, 2021

Carbidopa / levodopa "My father started Rytary 48.75-195 dosage, 3 pills, 4 times a day. He got worse with this medication. I personally think he was overmedicated by his doctor. He hadn't experienced dyskinesia yet, and within the second day of Rytary, it was so bad we were worried he would break his teeth due to how he was tightening his jaw and grinding his teeth. He had only experienced psychosis twice within his 10-year diagnosis, and every single day he was suffering from psychosis; irritable, argumentative, paranoid, angry, and extremely sensitive when he would talk about his past. Almost as if his personality had completely changed with Rytary. I'm not sure if he will continue it because he's gotten worse mentally and emotionally. It's a lot for us, caregivers. Physically, he's walking better and sleeping a tad better. I think Rytary needs to require a psychological exam before being prescribed this medication for Parkinson's."

• cjd...
• Taken for 2 to 5 years
• January 20, 2020

Carbidopa / levodopa "I've been taking Rytary for over two years now. I am on a high dosage and have tolerated it well: 4 capsules 4 times a day, 36.25-145 mg. I also take 100 mg of Amantadine 3 times a day to help with any dyskinesia."

• Hob...
• Taken for 1 to 6 months
• June 7, 2020

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."

• Cha...
• Taken for less than 1 month
• June 26, 2023

Carbidopa / levodopa "Diagnosed with Parkinson's 3 years ago. Been on a combination of Sinemet IR/ER for the past 2 years and off times decreased to just below 3 hours. Doctor wanted me to try Rytary. He calculated a dose of 48.75/195, 3 capsules 4 times a day. Day 1 only had very slight nausea but a noticeable difference in clarity and muscle pain. On day 2, the first dose gave me bad nausea, decreasing a bit between each dose taken. Had to stop taking it after the second dose of the day, switching back to Sinemet and contacting the doctor. We both concluded my dose may be too high. Decreased to 2 capsules 4 times a day and added 1 Sinemet ER with each dose, thus finding a sweet spot so I can correct the dosage of Rytary. Restarted the medication plan. Been 3 days now, no nausea and best I've felt in a long time during the day with no off times. Still need to adjust my night medication, but so far pleased with the results."

• BC ...
• Taken for 1 to 2 years
• February 28, 2019

"Sinemet for fibromyalgia. My wife suffers from PD for over two years now. She is using Sinemet 25-100 every 4 hours. Mylan as our usual manufacturer; Sun Pharma at times. She also takes 1 Sinemet ER at night. They seem to work well and help her a lot. Only one brand so far, Activis, works very poorly for my wife. Her leg function drops off significantly on this brand. My wife has also suffered greatly from fibromyalgia for 10-15 years; throughout her entire body. We were so distracted by her PD problems that we failed to notice until 1-2 months later that all of her fibromyalgia pain had disappeared completely. What a wonderful side benefit of the Sinemet. I guess we were due for something positive to happen for a change. This was 1-1/2 years ago, and no return of the fibro whatsoever. Blessings to all."

• Alm...
• February 17, 2020

Carbidopa / levodopa "My 87-year-old dad has had Parkinson's disease since 2014. He’s been on 25/100 mg C/L, 2 pills 2 times a day. Then my dad’s left leg looked really weak like 3 weeks ago, and his neuro put him on Rytary 48.75 mg/195, 2 pills 3 times a day. The first dose he took at night (after his first 2 doses of C/L - morning and mid-afternoon), he was able to sleep all night and had more strength in his left leg. But 2 1/2 weeks later, he started hallucinating and seeing goats and people talking and hanging out the living room window. His stress level was up, and he had the worst shakes. He was restless and had little sleep. The neuro said to give him the dose with food, but my mom and my dad were exhausted from the hallucinations and little sleep. So we skipped his evening dose of Rytary, and he slept all night until late morning. We gave him C/L again and this time 2 pills 3 times a day. Still monitoring him to see how he does. I wonder if we can give him C/L and then one dose of Rytary in the evening??"

• mjb...
• June 17, 2017

"Diag 2010 at 46 yo. Currently on year 6-7 of taking this combination of drugs. Still doing good but have noticed more off time as the years/months go by. I know the 10-year time window of losing its effectiveness is fast approaching for me. Generics are not all created equal. You need to try every mfg for a few months to see which one works for you. For me, the only brand that works is mfg by Mayne Pharma (formerly Teva). The other mfg: on one, I can never get stabilized (too much/too little in a pill), the other one gives me night terrors."

• Rob...
• Taken for 2 to 5 years
• December 16, 2021

Carbidopa / levodopa "I have been on Sinemet 12.5/50 mg taken 4 times a day for 22 months, but now my tremor seems to be getting worse. I have now started taking 5 pills a day, but this only makes the tremors worse and my lower jaw tremors. Advise anyone?"

• Hor...
• Taken for 1 to 6 months
• March 1, 2023

"My husband was on carbidopa/levodopa for about 3 months. Last month, he experienced anger, depression, and much confusion. This has set him back. He was taken off this medication, and I am unsure if he will get back to where he was before starting this medication—terrible experience."

• bri...
• May 24, 2020

"I am currently 60 years old and have had juvenile onset Parkinson's since back in 1975. I started taking carbidopa/levodopa 25/100 mg (instant release) 3X/day. Over the next 35 years, that dose slowly increased until I was taking around a massive dose a day, with significant off times. I also had debilitating dyskinesia, dystonia, and falls. So, in the late 2000s, my neuro told me it was time to consider options. Like deep brain stimulation (DBS)? So I gave in and had bilateral subthalamic nucleus (STN) DBS. WOW! Yes, I have some newer speech issues and more of a fall hazard than before. But the old me was BACK, feeling great. I was able to cut my meds back down to 400 mg of carbidopa/levodopa extended release per day. Today? I'm up to 800 mg of carbidopa/levodopa extended release per day, plus 274 mg of extended release amantadine (Gocovri), but my DBS keeps my off times to an absolute minimum. I still have issues with dyskinesia, dystonia, and get a few hallucinations late at night from my amantadine."

• shr...
• Taken for 2 to 5 years
• February 12, 2020

"I've been on carbidopa/levodopa/dopamine for two years after being on rasagiline/Azilect. I hate carbidopa/levodopa. I am always nauseated, I have gained weight, I can't think, and I am very depressed. I have told my neurologist this, and the answer is, well, let's try adjusting the dosage. I have night sweats, nightmares, and am always tired. Help."

• Jo ...
• Taken for 1 to 2 years
• November 22, 2019

"I have been taking Sinemet for nearly two years. I do not have a tremor. The drug helps relieve muscle stiffness and pain and helps my balance somewhat. However, it does nothing to help my slow movements and weakness, my speech, insomnia, etc."

• CHJ...
• Taken for 6 months to 1 year
• October 23, 2024

Carbidopa / levodopa "Was taking C/L 25/100 every 1.5 hr plus dopamine agonist. Doc was concerned about the high dose of agonist triggering compulsive behavior. Ramped down the agonist over multiple weeks and switched from C/L to Rytary 48/195; max of 2, six times/day. 'Kick start' the day with a C/L and orange juice at 7 am, then -- two R195s at 7:30; 10:30 and 1:30, dropping to one R195 at 4:30 and 7:30 pm. Appears to be sensitive to what I eat (and timing of snacks/meals). Cost of R195 appears to vary from $1 to $10/pill. Initially, tried an online pharmacy - not reliable - wouldn't provide order status or track delivery. After a couple of tries, local supermarket pharmacy has consistently delivered 360 R195s for $370. Supposed to be generic next summer."

• Anonymous
• Taken for 5 to 10 years
• November 11, 2024

Carbidopa / levodopa "I have been taking Rytary for about 5 years now with excellent results. It keeps me steadily controlled during the day. I don't have problems swallowing it. I am sad it will no longer be covered by my insurance plan. Generics don't seem to work as well."

• Ryt...
• Taken for 2 to 5 years
• September 18, 2023

Carbidopa / levodopa "I was diagnosed with young-onset Parkinson's disease 4 years ago. I switched from carbidopa/levodopa after a few weeks. I'm on 61.25-245 mg four times a day, but it wears off after about 4.5 hours. I didn't know the side effects until my mom's doctor asked if she had compulsive behavior (she also has PD) on it. My dad immediately thought of me. I spent thousands compulsive shopping. I'm more than $20K in credit card debt (none before). Tried increasing the dose for tremors and pain, but got serious dyskinesia. I'm on amantadine too, and my legs have mottled spots all over, and I'm swollen everywhere. Vivid dreams and nightmares, sudden extreme fatigue. I'm not sure what's caused by the PD and what's the drugs to treat it. It does help with the overall symptoms of Parkinson's, but I still get Botox injections in my feet every three weeks for spasms."

• Nan...
• Taken for 6 months to 1 year
• March 7, 2022

"Just started this treatment. I don't know if I need to take more because about 30 minutes before time to take the next dose, my symptoms are back. I feel nauseous and don't know why. It does help my gait and not being able to talk so people can understand me..."

• Ano...
• Taken for 2 to 5 years
• July 28, 2025

Carbidopa / levodopa "Rytary has been a game changer for me. I have not had any side effects from it, but I did have to persist for around 2 months for it to take full effect. I have consistently increased the dosage over the 3 years I have been using, and I am having very few off episodes or bad days."

• Ano...
• May 28, 2025

Carbidopa / levodopa "I find that it is unpredictable. Sometimes I take the pill, and it works great, and other times it does not work at all. I also believe it wears off before it's supposed to. I took one dose this morning, and it wore off in an hour. I keep taking the medication in hopes that it will balance out with me, however, by doing so, I have more reasons to write this review. One of the concerning side effects is that if you stop taking it abruptly, your condition may worsen. It does not say whether that's permanent or temporary. I tried to wean off it, and I noticed a strange sensation in my right leg that is normally not affected."

• Jud...
• Taken for 2 to 5 years
• July 12, 2025

Carbidopa / levodopa "The drug works well, however, it cannot be relied upon totally. I take 5 tablets a day: morning, noon, late afternoon, evening, and night. I find absorption depends on how full my stomach is. It can take as little as 1/2 an hour or as much as 2 hours to 'kick' in. The effects last for around 3 hours for the most part, but this also varies. I wish there was another method of taking this medication that did not involve the digestive tract."

• wv_...
• September 4, 2009

Carbidopa / levodopa "Overall was an effective drug for me, but had problems with it wearing off between doses."

• Ano...
• Taken for 1 to 6 months
• April 29, 2018

Carbidopa / levodopa "I took Sinemet for about a month, and while it lessened my uncoordinated hand movement, I fell into a very deep depression and was having panic attacks. As soon as I stopped taking it, I was better."