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.

mitcholson | @mitcholson | May 12 4:41pm

I've been taking Rotary for 3 months and feel I am indifferent on my emotions. NOT depressed but just numb or indifferent in most things that would have normally upset me or excite me in the past. I think its taken away my sex drive. I used to be very high sex drive and its almost non exist ant now. It does have a very good on time with few dips of off time in the day. Almost eliminated tremors. I take 3 pills 3-4 times a day. I just upped it to 4 pills this week. I also have the stiff legs with sore knees, not sure if its from the medication though.

Can anyone else relate? or confirm its from the med....

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1 reply
sdblondie | @sdblondie | Oct 14, 2024
In reply to @hopeful33250 "Hello @sdblondie and welcome to Mayo Connect. I have requested that your post be moved to..." + (show)
@hopeful33250

Hello @sdblondie and welcome to Mayo Connect. I have requested that your post be moved to another Connect discussion on Rytary,
--Is anyone using Rytary?
https://connect.mayoclinic.org/discussion/is-anyone-using-rytary/
My first thought is whether you have consulted with your PCP regarding these post-travel symptoms. If not, this might be a good first start. I would like to hear from you again as you seek answers for this problem. Will you continue to post?

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I have a call into my MDS and PCP today. I think it’s more than Rytary issues. PD has so many other facets to it. I’m even investigating Parkinson’s Gastroparesis since my symptoms mirror many of those and are so random. The anxiety, vomiting are perplexing, but not uncommon to PD. I’m hoping others can be of help! Thanks!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 14, 2024
In reply to @sdblondie "I barely notice I have PD when taking Rytary. The off periods were not even noticeable..." + (show)
@sdblondie

I barely notice I have PD when taking Rytary. The off periods were not even noticeable unless I went way late with a dose. Recently, I feel like it’s not helping like it used to. I originally took Sinemet, but it gave me nausea still after several weeks.How long have you gone before you needed to up dosage?I have traveled a lot over the years and I’ve started having problems after returning home from trips. I get nausea, tingling in my fingers and toes, terrible anxiety, vomiting (I know, crazy) loss of appetite and have ended up in ER twice. I’m released after hydration, blood work and usually Ativan to calm me down. I have NEVER gone to ER in my life except when I was in labor. My husband is very worried and says he doesn’t recognize me when we are at the ER. He says he tells doctor and nurses that this absolutely not me.I also started having low blood pressure and was taken off BP meds with no problem. I was diagnosed in 2021 and 72 yrs old. Until recently, I’ve been active, swim a few times a week, ride my 3 wheel trike, participate in lots of family activities, etc.I’m getting paranoid about traveling and afraid I’ll never return to my old self

Jump to this post

Hello @sdblondie and welcome to Mayo Connect. I have requested that your post be moved to another Connect discussion on Rytary,
--Is anyone using Rytary?
https://connect.mayoclinic.org/discussion/is-anyone-using-rytary/
My first thought is whether you have consulted with your PCP regarding these post-travel symptoms. If not, this might be a good first start. I would like to hear from you again as you seek answers for this problem. Will you continue to post?

REPLY
1 reply
sdblondie | @sdblondie | Oct 14, 2024

I barely notice I have PD when taking Rytary. The off periods were not even noticeable unless I went way late with a dose. Recently, I feel like it’s not helping like it used to. I originally took Sinemet, but it gave me nausea still after several weeks.How long have you gone before you needed to up dosage?I have traveled a lot over the years and I’ve started having problems after returning home from trips. I get nausea, tingling in my fingers and toes, terrible anxiety, vomiting (I know, crazy) loss of appetite and have ended up in ER twice. I’m released after hydration, blood work and usually Ativan to calm me down. I have NEVER gone to ER in my life except when I was in labor. My husband is very worried and says he doesn’t recognize me when we are at the ER. He says he tells doctor and nurses that this absolutely not me.I also started having low blood pressure and was taken off BP meds with no problem. I was diagnosed in 2021 and 72 yrs old. Until recently, I’ve been active, swim a few times a week, ride my 3 wheel trike, participate in lots of family activities, etc.I’m getting paranoid about traveling and afraid I’ll never return to my old self

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1 reply
nextlifetc | @nextlifetc | Aug 24, 2024
In reply to @mamasmeeve "Were your symptoms more significant without rytary? Do you think it has improved your cognition?" + (show)
@mamasmeeve

Were your symptoms more significant without rytary?
Do you think it has improved your cognition?

Jump to this post

Tough to quantify. Cognitive thought has never been impaired. Tremors we never bad. Yes, Rytary did help. There are many symptoms associated with parkinsons. My worst was swallowing. Had the problem for many years. 2 weeks after taking Rytary, my swallowing improved.

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mamasmeeve | @mamasmeeve | Aug 24, 2024
In reply to @nextlifetc "Rotary is the second drug that was prescribed. Carbadopa labadopa was the first. I was diagnosed..." + (show)
@nextlifetc

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

Jump to this post

Were your symptoms more significant without rytary?
Do you think it has improved your cognition?

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1 reply
nextlifetc | @nextlifetc | Aug 23, 2024
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

Jump to this post

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

REPLY
1 reply
herbie87 | @herbie87 | Aug 21, 2024
In reply to @mamasmeeve "Have you considered deep brain stimulation?" + (show)
@mamasmeeve

Have you considered deep brain stimulation?

Jump to this post

Performed 6 years ago

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mamasmeeve | @mamasmeeve | Aug 21, 2024

Have you considered deep brain stimulation?

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1 reply
herbie87 | @herbie87 | Aug 20, 2024
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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