1. < Parkinson's Disease

Is anyone using Rytary?

Posted by tllaes @tllaes, Aug 17, 2018

My doctor is suggesting I switch from a combination of Sinemet 25/100 and 50/200 to Rytary 36.25 mg-145 mg oral capsule,extended release. I would take 3 cap(s) 3 times a day. He feels my on time will increase. Is anyone taking Rytary? It is very expensive and not covered in my Rx Formulary at this time. If you are taking has it been an improvement? I have Parkinson for almost 7 years.

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

raebaby | @raebaby | Aug 11 1:02pm

My husband of 58 years died with Parkinson's. He took Rytary and it stopped the "wearing off "he was experiencing. It was of great benefit. He got it for a $100 co-pay through a program his neurologist recommended.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12 7:21am
In reply to @raebaby "My husband of 58 years died with Parkinson's. He took Rytary and it stopped the "wearing..." + (show)
@raebaby

My husband of 58 years died with Parkinson's. He took Rytary and it stopped the "wearing off "he was experiencing. It was of great benefit. He got it for a $100 co-pay through a program his neurologist recommended.

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I appreciate you sharing that information about Rytary, @raebaby. How are you doing?

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raebaby | @raebaby | Aug 12 3:24pm
In reply to @hopeful33250 "I appreciate you sharing that information about Rytary, @raebaby. How are you doing?" + (show)
@hopeful33250

I appreciate you sharing that information about Rytary, @raebaby. How are you doing?

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I'm doing well. Not long after
my husband died I developed breast cancer. My oncologist recently said my blood work showed I wasn't expected to have my cancer come back.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 12 3:48pm
In reply to @raebaby "I'm doing well. Not long after my husband died I developed breast cancer. My oncologist recently..." + (show)
@raebaby

I'm doing well. Not long after
my husband died I developed breast cancer. My oncologist recently said my blood work showed I wasn't expected to have my cancer come back.

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I'm sorry that you had to deal with breast cancer soon after your husband's death, @raebaby. That must have been very stressful. It is good news, however, that the blook work indicates that it probably won't reoccur.

Have you adjusted to living alone and do you have a good support network of family and friends?

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raebaby | @raebaby | Aug 12 4:17pm

I live alone on 22 acres in coastal California. My son comes to stay with me several days a week. Neighbors have been cutting the property to prevent fire damage. My daughter recently drove me up to Portland to visit the rest of my family. I have a great support group and am enjoying my life a lot! I even see my 8th grade boyfriend in Texas. Thanks for asking!

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cmk1952 | @cmk1952 | Aug 14 6:36am

My husband takes Rytary - it lasts about 5 hours vs 3 hours with Sinemet. Ocassionally, he supplements with a Sinemet at times when the wearing off happens sooner. Everyone and every day can be different with Parkinson’s. Rytary has given him more time in between doses and well worth the extra copay.

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herbie87 | @herbie87 | Aug 20 11:01am
In reply to @hopeful33250 "Hello @bestpoppi and welcome to Mayo Connect. I see that you have tried Rytary. As you..." + (show)
@hopeful33250

Hello @bestpoppi and welcome to Mayo Connect. I see that you have tried Rytary.

As you are new to the Parkinson's discussion group, would you care to share about your history with PD? How long were you diagnosed and what meds were you taking prior to Rytary?

Were you given Rytary to help with off-times?

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diagnosed with essential tremor in 2010, and PD in 2015 . I am a retired pharmacist and many drugs were used, but l-dopa help control my tremors in upper body---but not able to help with tremors in my legs. There were 2-3 hours of "off" time --more of a nuisance. My dose 2 tabs 4 times a day of the 250mg.
My doctor thought RYTARY would help. My dose is 2 capsules 4 times a day of the 48.75/195.
I have been on it 2 months and I take it every 4 hours. No more "off" times, but my leg tremors
are not being helped. I couldn't believe the price. Very expensive, and not covered under my health plan.
@herbie87

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mamasmeeve | @mamasmeeve | Aug 21 6:02am

Have you considered deep brain stimulation?

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1 reply
herbie87 | @herbie87 | Aug 21 10:52am
In reply to @mamasmeeve "Have you considered deep brain stimulation?" + (show)
@mamasmeeve

Have you considered deep brain stimulation?

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Performed 6 years ago

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nextlifetc | @nextlifetc | Aug 23 12:27pm
In reply to @hopeful33250 "Hello @tllaes On a personal note, while I've never tried Rytary, I have known members from..." + (show)
@hopeful33250

Hello @tllaes

On a personal note, while I've never tried Rytary, I have known members from a PD support group that I attend who did try it when it first came out and gave it rave reviews, but that is not a personal recommendation of course, only the evaluations of others.

I suppose you have already tried the long-lasting Sinemet? It goes by the name of Stalevo (the generic name is Carbidopa/Levodopa/Entac). It is the Entac (Entacapone) that makes the other ingredients last longer. You can also take the Entacapone as a single drug. I find that one Stalevo per day works quite well for me along with 2 Sinemets.

I have a friend from a PD support group, here in SE Michigan, who recently was in a clinical trial with a pump. It is a pump on the outside of the body and it gives her a steady stream of med. It has worked quite well for her, but as it was part of a clinical trial and I don't know if it will go on the market or not. You might do some research on it and see what you can find or ask your neurologist to check into it.

I hope that you are able to find a solution for your PD symptoms soon. Will you update me on how you are doing?

Teresa

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Rotary is the second drug that was prescribed. Carbadopa labadopa was the first. I was diagnosed 7 years ago. The first prescription put me on the couch. Rotary 23.75/95mg, 1 capsul, 2 times daily.
Works for me. You must look close to see that I have Parkinsons. I am a lucky man. I have symptoms but they are mild. I am not sure of the cost. There are many other non drug things that make big differences. T

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