Generic Name: Rytary for Parkinson's Disease (carbidopa-levodopa)
"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."
"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!"
"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."
"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."
"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!"
"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."
"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."
"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."
"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."
"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!!"
"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!!!!!!!"
"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."
"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."
"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 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."
"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."
"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"
"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."
"It took awhile 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!!!!"
"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."
"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??"
"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."
"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."
"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."
"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."
Sinemet, Sinemet CR, Crexont, Dhivy, ... +2 more
Sinemet, Sinemet CR, Crexont, Dhivy, ... +2 more
