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.

jennyjoy | @jennyjoy | Oct 2, 2023
In reply to @oronogo "I’m seeing my local dr this week, to schedule therapy. I have had big hand therapy..." + (show)
@oronogo

I’m seeing my local dr this week, to schedule therapy. I have had big hand therapy and I’m setting up more now. I have had trouble with my knees so I have gotten out of the exercising, but slowly getting back into it. I feel walking is the best exercise.
I did call the drug company for help with Rytary cost. They have qualified me for one year and then I will have to re-qualify at the end of that year. I feel the rytary has helped a lot with on time. I still need to work more on balance and walking. I feel my Tremors are much better, but still having some when medicine is due. The doctor started me on three pills four times a day and at that time said I might need four pills four times a day. I have not talked to the PN doctor since I started the medication.
I will try to keep you updated as I continue on the Rytary.

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I have not heard of this medication. I am currently taking Primidone for face.and hand tremors. I am now increasing dosage to 250mg daily at night. Its effects seem to be decreasing so I am slowly increasing the dosage, which my Primary Dr had advised. I wish you luck.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 15, 2023
In reply to @jennyjoy "I have not heard of this medication. I am currently taking Primidone for face.and hand tremors...." + (show)
@jennyjoy

I have not heard of this medication. I am currently taking Primidone for face.and hand tremors. I am now increasing dosage to 250mg daily at night. Its effects seem to be decreasing so I am slowly increasing the dosage, which my Primary Dr had advised. I wish you luck.

Jump to this post

Hello @jennyjoy

How are you doing with the increase of medication for the tremors? I see that your PCP has suggested the increase dosage. Do you see a movement disorder specialist as well?

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21amy | @21amy | Jun 3 8:02am

I was on Mirapex for 11 years. After 11 years I changed from my first neurologist PA to Mayo. They immediately stopped the Mirapex and started me on Sinimet. I get very nauseated from Sinimet so switched to Rytary about 2 months ago. I feel like I have less off time, less nausea and feel less fatigued. I still have more nausea than I would like. I take Lodosyn and Domperidone with each dose of Rytary to help with the nausea. Does anyone have any suggestions for nausea. I am taking 3 capsules 3 times a day of the Rytary. I am seeing my neurologist at Mayo today and am hoping to either increase my dose to 4 capsule 3 times a day or 3 capsules 4 times a day. I live in Minnesota and there is some type of community program in Minneapolis that makes it affordable. I pay $15/month. Other wise it was over $1000 a month. I have to call this center when I have 1 week supply left and then they over night send it to me. Mayo set this up for me.

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1 reply
Joanne Eckert | @joanneeckert | Jul 24 11:56pm

My adult son has had Parkinson’s for 8 years. He is now 50 years old. He began Rytary a few months ago and it has really helped him quite a bit.

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herbie87 | @herbie87 | Aug 9 3:00pm
In reply to @hopeful33250 "I so appreciate your update, @oronogo! It's so good to hear that the drug manufacturer has..." + (show)
@hopeful33250

I so appreciate your update, @oronogo! It's so good to hear that the drug manufacturer has qualified you for help with the cost of the medication. That's really good news.

I'm also glad to hear that you will be starting therapy. Physical therapy and regular exercise are so very helpful when it comes to controlling the symptoms of PD. It can really help to avoid (or at least minimize) many of the disabilities that come with this disorder.

I look forward to hearing how you are progressing. Will you post again and let me know how you are doing?

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I started taking Rytary about two months age two capsules, four times a day. I still have some of the tremors but the drug seems to cover all the off Times. Let me know how others either like it or not
thank you.

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1 reply
bestpoppi | @bestpoppi | Aug 10 11:45am

I've been on Rytary for approximately 2 months and have seen no benefit at all. The cost is ridiculous, even with insurance!

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10 4:05pm
In reply to @bestpoppi "I've been on Rytary for approximately 2 months and have seen no benefit at all. The..." + (show)
@bestpoppi

I've been on Rytary for approximately 2 months and have seen no benefit at all. The cost is ridiculous, even with insurance!

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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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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10 4:10pm
In reply to @herbie87 "I started taking Rytary about two months age two capsules, four times a day. I still..." + (show)
@herbie87

I started taking Rytary about two months age two capsules, four times a day. I still have some of the tremors but the drug seems to cover all the off Times. Let me know how others either like it or not
thank you.

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Hello @herbie87 and welcome to the PD support group on Mayo Connect. I'm glad to hear that the Rytary is helping with your off times.

When I was diagnosed with PD, I was having balance problems and foot dragging. What were your initial symptoms? How long ago were you diagnosed?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 10 4:12pm
In reply to @21amy "I was on Mirapex for 11 years. After 11 years I changed from my first neurologist..." + (show)
@21amy

I was on Mirapex for 11 years. After 11 years I changed from my first neurologist PA to Mayo. They immediately stopped the Mirapex and started me on Sinimet. I get very nauseated from Sinimet so switched to Rytary about 2 months ago. I feel like I have less off time, less nausea and feel less fatigued. I still have more nausea than I would like. I take Lodosyn and Domperidone with each dose of Rytary to help with the nausea. Does anyone have any suggestions for nausea. I am taking 3 capsules 3 times a day of the Rytary. I am seeing my neurologist at Mayo today and am hoping to either increase my dose to 4 capsule 3 times a day or 3 capsules 4 times a day. I live in Minnesota and there is some type of community program in Minneapolis that makes it affordable. I pay $15/month. Other wise it was over $1000 a month. I have to call this center when I have 1 week supply left and then they over night send it to me. Mayo set this up for me.

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Hello @21amy,

I see that you had an appointment with your neurologist in June. Was the doctor able to help you with the nausea or the changes you were wanting to the Rytary dosage?

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oronogo | @oronogo | Aug 10 7:36pm
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?

Jump to this post

I was diagnosed with Parkinson’s in 2017 starting with a trimmer in my right hand. I took the sentiment for about three years due to nausea he started me on Rytary 48.75–1 95 mg taking three pills four times a day in June 2023. I take other medicines and started having trouble. My parkinson doctor at Mayo Cut my dosage to about half 23mg?? One tablet at seven and one at 2 PM so far I have trimers in the evening along with stiffness in my feet in the morning. I’m in stage 1 of Parkinson.
My doctor’s Secretary helped me get Amneal patient assistant program in which the Rytary is sent to me by UPS once every three months Free the phone number for them is 877-764-9021. I hope this helps and answers your questions. Message me here if you have more question.
Good Luck

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