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.

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

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

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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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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
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

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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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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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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
Moderator
Lisa Lucier, Moderator | @lisalucier | May 13 8:45am
In reply to @mitcholson "I've been taking Rotary for 3 months and feel I am indifferent on my emotions. NOT..." + (show)
@mitcholson

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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Welcome to Mayo Clinic Connect. Years ago I was on an antidepressant where I remember telling the doctor that I had lost all emotional highs and lows. For this reason, and since there were numerous alternatives, they switched my medication. But I remember how odd that felt going to a Christmas concert after which I'd normally feel so elated and noticing I felt nothing.

A marked change in sex drive is also a notable side effect.

Does your doctor attribute these changes you've noted in your body to the medication?

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1 reply
mitcholson | @mitcholson | May 13 9:42am
In reply to @lisalucier "Welcome to Mayo Clinic Connect. Years ago I was on an antidepressant where I remember telling..." + (show)
@lisalucier

Welcome to Mayo Clinic Connect. Years ago I was on an antidepressant where I remember telling the doctor that I had lost all emotional highs and lows. For this reason, and since there were numerous alternatives, they switched my medication. But I remember how odd that felt going to a Christmas concert after which I'd normally feel so elated and noticing I felt nothing.

A marked change in sex drive is also a notable side effect.

Does your doctor attribute these changes you've noted in your body to the medication?

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My doctor suggested taking a hire dose when I relayed the info. He reamended taking a hire dose. With that, I assume he thinks it was the Parkinson's progression. I have since taken the extra pill with no change on these issues.

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1 reply
raebaby | @raebaby | May 13 11:33am

My husband who died at 80 with Parkinson's started taking Rytary the last few years of his life. He stopped having "wearing off" that he had with Sinemet.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 14 9:35am
In reply to @mitcholson "My doctor suggested taking a hire dose when I relayed the info. He reamended taking a..." + (show)
@mitcholson

My doctor suggested taking a hire dose when I relayed the info. He reamended taking a hire dose. With that, I assume he thinks it was the Parkinson's progression. I have since taken the extra pill with no change on these issues.

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Hello @mitcholson and welcome to the Parkinson's support group on Mayo Connect. We can all empathize with side effects from medications. They can certainly impact the quality of our lives. There are many medications to treat the symptoms of PD. Here is information about some of these medications from the Davis Phinney Foundation website,
https://davisphinneyfoundation.org/resources/parkinsons-medications/
Was Rytary the first PD medication that you have tried? How long ago were you diagnosed with PD?

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