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

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

Sinemet (carbidopa / levodopa) "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 12kilos 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"

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

Rytary (carbidopa / levodopa) "I was taking Rytary 3 capsules 3 times a day of the 95-23mg 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 its the sign of the times that there is no funding available anywhere and its back to generic carbidopa/levidopa 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."

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

Sinemet (carbidopa / levodopa) "I started on Sinemet about a year ago for stage 2 Parkinsons. 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. Sinement also allowed me to return to work after being unable to work for about 8 months. Granted I can not 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..."

• Charlie
• Taken for less than 1 month
• June 26, 2023

Rytary (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 deceased 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 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 doctor. We both concluded my dose may be too high. Decreased to 2 capsules 4 times a day and add 1 Sinemet ER with each dose, thus finding a sweet spot so can correct dosage of Rytary. Restarted 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."

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

Rytary (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 4x a day, 36.25-145mg. I also take 100mg of Amantadine 3x a day to help with any dyskinesia."

• Alma
• February 17, 2020

Rytary (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 x a day... then my dad’s left leg looked really weak like 3 wks ago and his neuro put him on Rytary 48.75 mg/195 2 pills 3 x a day. First dose he took at night (after his first 2 doses of CL- morning and mid afternoon) he was able to sleep all night and had more strength in his left leg. But 2 1/2 wks 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 little sleep. Neuro said to give him dose with food but my mom and my dad were exhausted of the hallucinations and little sleep. So we skipped his evening dose of Rytary and he slept all night till late morning and we gave him CL again and this time 2 pills 3 x a day. Still monitoring him to see how he does. I wonder if we can give him CL and then one dose of Rytary in evening??"

• Hobbs
• Taken for 1 to 6 months
• June 7, 2020

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."

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

Sinemet CR (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."

• KMano
• Taken for less than 1 month
• August 18, 2021

Rytary (carbidopa / levodopa) "My father started Rytary 48.75-195 dosage 3 pills - 4x times a day, he got worse with these 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 a psychosis twice within his 10 year diagnosis, and every single day he was suffering from a psychosis; irritable, argumentative, paranoid, angry and extremely sensitive when he would talk about his past. Almost as 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."

• BC p...
• 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 Fybromyalgia 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 yrs. ago and no return of the Fibro whatsoever. Blessings to all."

• mjbaz
• June 17, 2017

"Diag 2010 at 46yo. 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 stabalized (to much/too little in a pill) the other one gives me night terrors."

• shrip
• Taken for 2 to 5 years
• February 12, 2020

"I've been on carbidopa/levodopa/dopamine for two years after being on Rasagaline /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"

• Robert
• Taken for 2 to 5 years
• December 16, 2021

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

• brig
• 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 25/100mg (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 2000's 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 400mg of Carbidopa/Levodopa extended release per day. Today? I'm up to 800mg of Carbidopa/Levodopa extended release per day, plus 274mg of extended release Amantidine (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 Amantidine."

• Rytary
• Taken for 2 to 5 years
• September 18, 2023

Rytary (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."

• Jo Bob
• 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."

• Horri...
• 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."

• Nance
• 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 mins before time to take next dose my symptoms are back. I feel nauseous and don't know why. I does help my gait and not being able to talk so people can understand me..."

• wv_pi...
• September 4, 2009

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

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

Sinemet (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."

• mark...
• June 5, 2017

Sinemet (carbidopa / levodopa) "terrible depression, mood swings, not helping tremors seems same as before I was taking them, might ask doctor to stop giving it one more week, I have been taking for 6 weeks"

• shaking...
• Taken for 1 to 6 months
• November 30, 2020

Rytary (carbidopa / levodopa) "Was having uncontrollable shaking and muscles movement. Started on Rytary 95mg two times a day. Working great for me. Have reduced shaking and over all muscles movement by about 90%."

• webbt...
• November 28, 2011

Sinemet CR (carbidopa / levodopa) "I started Sinemet 25/100mg and within 2 hrs my tremor stopped. I still get some but not as bad as before. My walking also improved."

• Charlie
• June 14, 2017

"After every dose have 30 to 45 minutes of extreme tiredness and difficulty thinking. As time goes on seems to be getting worse. Have not been able to get any answers."

• marcie
• December 7, 2009

"All it took was one dose and I could walk normally. Minimal side effects after 5 years on it."