Rytary or Regular C/L: If the price is not... - Cure Parkinson's

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Rytary or Regular C/L

theAfrican profile image
16 Replies

If the price is not a problem .Do you choose Rytary over regular c/l ? Or vice Versa .

The reason of your choice?

Thank you in advance..

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theAfrican profile image
theAfrican
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16 Replies
PDGal4 profile image
PDGal4

I use both. Rytary because of the longer more even delivery time. 1/2 regular C/L to boost dip between dosages. Rytary four times a day, C/L three.

Rytary is the “best” c/l medicine.

It delivers the most continuous stream of levodopa for the longest amount of time...

When I took it in the past it allowed me to stay on for 5 continuous hours (which is sweet)...

If you can somehow manage the cost via wealth, insurance, or some form of aid, you should definitely give it a try...

pdpatient profile image
pdpatient in reply to

What strength and how many pills do you take, Levod?

in reply to pdpatient

Two 48.75/195 capsules Three times a day . That was a couple of years ago. I had to stop using it since I changed insurance and they became too costly for me!)

pdpatient profile image
pdpatient in reply to

Thanks. I believe that there are a few foundations that cover the cost to get the meds if you apply for the assistance.

PD_Partner profile image
PD_Partner in reply to pdpatient

There is assistance to actually pay 100% based on income. My spouse was able to get free for over a year but unable once on Medicare. There is some ridiculous guideline that you can’t get the assistance of on government Part D insurance. It is on the high tier drug list for part D for Blue Cross which means you pay 50%. He can’t afford $1200 a month for that copay so had to stop Rytary. Don’t get me started how frustrating and ridiculous both of those things are that prevent him using Rytary.

FYI his neurologist prefers Rytary even though same drug as the CL because of the delivery of it works better.

PDGal4 profile image
PDGal4 in reply to PD_Partner

How many months would he have to pay out-of-pocket before catastrophic and the plan pays for most the drug? Mine is $6350; so after 5 months, medicare Part D would pay in full. This averages out to $530 a month; still high, but a little more palatable. Also my doctor, a movement disorder specialist, has been able to argue to tier with the insurance company/medicare. I consider myself fortunate my co-pay is $60 a month. Although, pre-medicare it was $10 a month with assistance from Rytary. Good luck.

rhyspeace12 profile image
rhyspeace12

My husband had a lot less "off time" with Rytary and he had assistance help which gave it to him with zero copay. He took it every 3.5 hours. He could take a ragular C/L if needed, but rarely had to.

I am a big fan of Rytary! Have been on it for a couple of years, and have just increased my dosage from the smallest dosage, to the next, and immediately feel that is giving me much more symptom relief.

StayPosEvryDay profile image
StayPosEvryDay

Similar experience as PDGal14. Rytary 3 caps, 4 X day 48.75/195 mg. 1 CL to eliminate "off period" 2 to 3 X day. Only have 2 month's experience with Rytary. Rytary effectiveness altered by food and exercise intensity like regular C/L. Diagnosed with PD in August of 2008. I am 73. I plan to continue with Rytary. On my immediate radar is REM sleep behavior disorder. Each new year seems to bring new challenges. PD is an unusual disease - tremors, dystonia, dyskinesia - for me. Beyond meds is intense exercise with a touch of medical cannabis before exercise and immersion into the beauty of nature to be in the now.

park_bear profile image
park_bear

Definitely a fan here of the time release forms, which include Rytary, Sinemet CR, or the equivalent generic carbidopa levodopa ER.

grandmama16 profile image
grandmama16

My husband takes Generic Sinemet at night. He's keeping to a low dose. If he has stiffness of movement he'll take Resigiline during the day. I'm very confused about it all since he's vague on what Drs. Say. Is Rytary same as Sinemet? He is sleepy most of the time. I don't know if that's PD or side effect from med. We're in mid 70's. I cannot tell what an off time is for him. He does go to a boxing class twice a week and is part of a study on exercise tho he is in the Control group so didn't get the Peleton that records it all. He wears a Garmin to track his steps but has lost 2 of them so I don't see how he can be of value to the study. Both of us are not motivated. Could Rytary change that? Is falling asleep a lot during the day an OFF time. He's had PD for at least 7 years. M.A.

grandmama16 profile image
grandmama16

I just looked up Rytary and Sinemet on Web MD and they seem to be the same. Why would Rytary be more expensive? Hubby's med. is Generic Sinemet. Does Rytary have a generic?

Rytary has the same active ingredients as Generic Sinemet (aka carbidopa/levodopa or c/l).

The main difference is that Rytary is extended release.

I am not sure what causes the tiredness (the c/l or the disease itself), but it is a very common symptom.

Falling asleep is not considered an "off-time".

>I cannot tell what an off time is for him.

This is troublesome if HE can not tell the difference, because if he does not get any benefit from c/l he should not be taking it... (since he likely does not have PD)

FYI, for me, when I am "off" I experience tremors and slowness of movement.

lmtwa profile image
lmtwa

Rytary is the best! 77 male PD 4 or 5 years - ET since 1982 - changed to PD - tried everything - until I found a great Doc in DC who put me on Rytary - 1 year now - my wife will tell you what a different person I am - I've read everything about Sinemet (and others) - they are not the same! I think it's the binding agents (??) which make it different. But from personal experience - THEY ARE DIFFERENt!! The VA wouldn't go for the Rytary until I "stepped" through Sin - I told them I wouldn't do that - (after 6 months on Rytary) - So my doctor convinced my Part D to let me use that. It' still expensive, but not as expensive. BTW I had little or no sleeping problems on R - about 1 month ago I began waking up for a few hours. A 1 mg melatonin helps -I find if I get sleepy during the day I power through it and I am fine. 2 Rytary 36/145 4 times a day.

Don_oregon_duck profile image
Don_oregon_duck

I switched to Rytary about 3 years ago. Rytary leveled my off periods which were often and unpredictable. The timing of food is not as much of a problem for Rytary because it is mainly effected by protein in your stomach and not how full your stomach is. I can tell if something has compromised the Rytary within 30 minutes. If it is not as effective as it should be I take 25/250 C/L immediate release of the monthly benefit which I lovingly refer to as a popper. That bridges the effectiveness of the Rytary until the next portion of the timed release kicks in. I am taking 48.75/195 25 pills a day. (5 pills 5 times/day)

Which is twice the recommended dailly maximum. For that reason I was referred to have the DBS surgery. Here is an interesting fact. A known side effect of Rytary is drowsyness. I have found since taking the med that where I would almost always fall asleep riding in a car I can now pleasantly stay awake. Happily the VA has covered all of my costs so far.

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