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.

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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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@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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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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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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@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.

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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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@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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?

REPLY
@hopeful33250

Hello @oronogo,

It is great to hear that the Rytary is helping with many of your Parkinson's symptoms. I am sorry to hear that you are having blood pressure problems. Often, meds for Parkinson's (PD) can result in lower blood pressures, however, it sounds like yours are causing more difficulties because of the aortic aneurysm.

I also take PD medications and also have aortic insufficiency (somewhat different than an aneurysm) so I understand a little about how the meds for both issues can interfere with blood pressure.

As a healthy lifestyle will help with both PD as well as heart problems, I'm wondering if you enjoy daily moderate exercise? This can help with both cardiac problems as well as the PD? If you are not engaged in exercise, you might consider talking with both your cardiologist as well as your neurologist to see what type of exercises would benefit you at this time. Have you had any physical therapy for Parkinson's?

Regarding the price of Rytary, that cost of meds can be difficult. Have you contacted the drug manufacturer to see if there are any discount programs that they offer? Are there any pharmacies in your area that honor the prices of Good RX? Good RX can help lower your prescription costs. Here is their website where you can check on the price https://www.goodrx.com/go/homepage-lander-sem-7-tl?

I hope that you can talk with your doctors and find some help with your symptoms. Will you post again and let me know how you are doing?

Jump to this post

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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@oronogo

I started Rytary a couple months ago. I also have a ascending aortic aneurysm. The cardiologist advises me to maintain a low blood pressure 120 or less over 70. I’m having problems with pressure going up then dropping back in the evening. I take BP pills at bedtime it’s back down the next morning.
I am anxious to talk to others that are just starting the RYTARY. I take 3 pills at 7am 11 am 3 pm. 7pm. I’m feeling much better, not as stiff, helps with my focusing ect. I’m still having trouble with balance, and anxiety. My doctor is a movement specialist at Mayo.
Has anyone found a Medicare supplement insurance that pays good for Rytary?
Rytary?

Jump to this post

Hello @oronogo,

It is great to hear that the Rytary is helping with many of your Parkinson's symptoms. I am sorry to hear that you are having blood pressure problems. Often, meds for Parkinson's (PD) can result in lower blood pressures, however, it sounds like yours are causing more difficulties because of the aortic aneurysm.

I also take PD medications and also have aortic insufficiency (somewhat different than an aneurysm) so I understand a little about how the meds for both issues can interfere with blood pressure.

As a healthy lifestyle will help with both PD as well as heart problems, I'm wondering if you enjoy daily moderate exercise? This can help with both cardiac problems as well as the PD? If you are not engaged in exercise, you might consider talking with both your cardiologist as well as your neurologist to see what type of exercises would benefit you at this time. Have you had any physical therapy for Parkinson's?

Regarding the price of Rytary, that cost of meds can be difficult. Have you contacted the drug manufacturer to see if there are any discount programs that they offer? Are there any pharmacies in your area that honor the prices of Good RX? Good RX can help lower your prescription costs. Here is their website where you can check on the price https://www.goodrx.com/go/homepage-lander-sem-7-tl?

I hope that you can talk with your doctors and find some help with your symptoms. Will you post again and let me know how you are doing?

REPLY
@joanneeckert

I’ve haven’t heard of Rytary. My 48 year old son takes 50 mg of nortriptyline at 10 PM along with 50 mg of Trazadone. at the same time. They help him sleep. Since he lives by himself 3 hours away, I wish he would realize how much we care about him & love him. I spend a lot of time researching and he doesn’t share as much with us as we wish he would so now I need to remain quiet for a few days and let him call us. God bless you, Joanne

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Hello @joanneeckert

I noticed that it has been several months since you last posted about your son. How is he doing?

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