Carbidopa / levodopa and Muscle Spasms: What Users Say

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

Carbidopa / levodopa for Parkinson's Disease "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

Carbidopa / levodopa for Parkinson's Disease "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!!"

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

Carbidopa / levodopa for Parkinson's Disease "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."

• The...
• March 2, 2021

Carbidopa / levodopa for Parkinson's Disease "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."

• Anonymous
• June 3, 2017

Carbidopa / levodopa for Parkinson's Disease "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

Carbidopa / levodopa for Parkinson's Disease "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."

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

Carbidopa / levodopa for Parkinson's Disease "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."

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

Carbidopa / levodopa for Parkinson's Disease "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 for Parkinson's Disease "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 for Parkinson's Disease "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."

• bri...
• May 24, 2020

For Parkinson's Disease "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."

• bri...
• May 24, 2020

For Parkinson's Disease "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."