My doc thinks I might have better success with Rytary than with Sinemet, which brought on a lot of foot contortion and rigidity. Have you tried Rytary? If so, what was your experience?
Rytary: My doc thinks I might have better... - Cure Parkinson's
Rytary
It didn't work for me, too unpredictable. There are several members taking it successfully; hopefully they will respond.
I remember some time ago you were upping your dose of Sinemet in hopes of getting some benefit from it. Did it finally start reducing your tremors or provide other benefit?
Hi Beckey. I switched from C/L to Mucuna for the same foot contortion symptom. The problem still occurred.
My opinion is that I was taking to much C/L as well as to much Mucuna.
Try cutting back on Sinemet for starters. Take B1 if your not already.
My humble opinion.
I went from C/L IR to Rytary, and liked it a lot...
It yielded longer and more predictable on times...
I had to stop using it after a change of insurance, when I would have had to pay a lot more for it (out-of-pocket)...
Btw, I am now on C/L CR, which I don't think is as good as Rytary...
How did you get Rytary. It was FDA approved some years ago but all UK Neurologista say whilst aprroved UK: It is not available. I assume you are based in USA.. Do you know of any way of getting it, even at full price and sent to ITaly
Yes, I am in the US. Sorry, I don't know how you might get some in Italy... Maybe the manufacturer can say?
I have been on Rytary for about a year. there is an adjustment period and I’ve decreased my dosage twice in that year. My problem is wearing off periods. Rytary lasts 4-4.5 hours usually but I do supplement 3x day with half C/L. I take 2x95 mg 4 x day. Did seem like some of my balance got worse, but PT says attributable to dyskinesia. For me always balancing being buzzed on meds with not enough. It is expensive but your doctor can get you a form where manufacturer helps with cost. I now have $20 copay.
My husband does much better on Rytary. We get it with no co pay through an assistance program. The Assistance Fund 855 421 4608.
I’ve been taking Rytary for about nine months and am doing pretty well on it. I don’t get the sleepy, sometimes hyped up feeling on it that sinemet used to give me. It’s more even. I’m on one 195 mg every four hours. Sometimes I supplement with carb/levo as well, but never more than one full tablet a day. It took awhile to get used to...my doc said the brain has to adjust to it. My tremors are gone with it, but sometimes I get dyskinesia in my foot.
Hi Beckey, I tried Rytary a few months ago, didn't do much for me except give me very painful, wake up in the middle of the night, toe cramps, Doc said ok Mr. Lab Rat, then let's try Requip 2mg ER once a day", seems to be supporting the Sinemet ok...
God Speed!
My doctor said I’ll be better with Rytary, so he switch me from sinemet to Rytary. The change didn’t worked for me, i asked my doctor to put me back on sinemet, but he said I have to give more time to Rytary, I went through three awful months, but after that Rytary started working, and I feel so much better now .
I switched from c/l to Rytary but it caused foot dyskinesia at night. Went back to c/l and dyskinesia went away.
I have been on it since it became available. Prior to that I was taking sinemet every 2 hours meaning that I could not eat a meal. Now I’m on every 4 hours and occasionally take a sinemet with off times.... I also have had the assistance program which gets reviewed every year. I don’t think I will be able to keep taking it if it’s denied .
Levodopa is believed may not be absorbed as efficiently if it is consumed at the same time as protein. That's why it is recommended to take levodopa on an empty stomach or about 30 minutes before a meal . Since Rytary has extended release feature it is hard to determine when the next dose of levodopa is going to be yielded. Same problem is with Carbidopa, which is incompatible with Vitamin B6. I am wondering if this issue has been taken into consideration.
It works for my brother - but he gets too stimulated, he does a lot of lip smacking, or what seems to be his tongue is uncontrollable...very odd...I don't believe this happened on sinemet- can't recall...but there's more of an "on" time with Rytary due to the slow release, and he doesn't complain as much of restless legs on Rytary anymore, which was a big issue with Sinemet.
The lip smacking is a form of dyskenesia. My husband purses his lips and looks upward when he has too much of it in his system, but it passes. My husband had a lot more wearing off with Sinemet. He started out on Rytary needing an additional Sinemet once in a while along with it, but now is totally off Sinemet. Rytary isn't affected by when he eats protein.
I have been on Rytary for a couple of years. Now I am back to C/L/E. I switched back because I found that my response to Rytary is less predictable. One day it works fine, next day I get dyskinesia or shorter on-times. I am trying to figure out why this is happening. My first guess is the conflict between levodopa and protein from food due to the gradual release of levodopa in Rytary vs immediate release in C/L/E. Another possible reason is - Rytary doesn't contain Entacapone which is believed to be beneficial to people with COMT mutations (I have one). What I miss about Rytary vs C/L/E - the former wears off more gradually so you have time for action to avoid the Cinderella Midnight moment
My husband has only been on Rytary. He takes the 61.25 strength 4 X per day. 6 and 11 am 4 and 9 pm. A neurologist in Florida had him on almost double this amount 48 and 61 4 X per day and his whole system went out of sorts. Did not know who he was. Long story short it was way to much medication. He like I said is taking now the 61 strength and doing much better. Very important that it is taken at the same time every day.
I just really want to thank all of you for responding to my post. I appreciate it!
Been suggesting it here for ages. We found it to be a marvelous med. the biggest problem is getting the doc to understand how to dose it...it’s not a 1:1 trading with sinemet. We didn’t have that problem but some do. You can call the manufacturer if needs be and they can advise your doc.
I switched from c/l 25/100 sinemet about 4 weeks ago to Rytary. Sinemet was becoming less effective after 3 years of use. I believe there are few, if any, c/l generics that are not substandard. The generic drug market is all about making as much profit as possible using the cheapest ingredients the manufacturer s can find. 20 years ago most drugs Americans used were of U.S. origin. Since the generic boom in the last 20 years over 90 percent of drugs are made in India, China, Mexico and many countries where there is little or no real regulation by the FDA over quality and safety. Corruption and profit are the order of the day. These offshore drug manufactures routinely purchase the cheapest ingredients they can find. It is a hugely corrupt and highly profitable industry.
When a drug goes generic, you would think that the generic drug maker is given access to a list of the products ingredients from the patent holder. No, it doesn't work that way. It is incumbent upon the the generic drug company to somehow back engineer the drug using what ingredients they can come up with that approximate the patented drug. The generic drug is not the same drug they are trying to duplicate. Legally the generic drug can vary in effectiveness and potency by 25 percent under to 25 percent over.
Generic drug industry does not have your best interest in mind, no more than any other industry that is a corporation. Corporations are legally bound to make as much profit for shareholders as is possible. And when that corporation makes the generic drug that your life and health depend on is located in a corrupt third world country, it's a win for your insurance company and the drug industry.
Back to Rytary. One reason rytary works better for many of us is probably because it is NOT generic. When it does go generic, and someday, maybe soon, it Wil. Lookout, because it will not be near as effective and people that use generic Wil say it doesn't seem the generic works as well as the original Rytary. It's less expensive, yes. But it is a different drug with different ingredients.
SuperB1953 - You said "Very important that it (Rytary) is taken at the same time every day." Why is that?