Is anyone using Rytary?

I’ve been on Rytary since my first diagnosis. My dosage and frequency has changed over this period. I now take 2 - 145mg - 5 times a day. Rytary is working for me. I still have “off” times. My last dose is 11 pm. My first dose is 7 am. I have have sleep issues. I do take Tylenol PM and natural Melatonin. For the most part they help for me. But I rarely sleep past 6 am unless I am very tired. I do some days wake up at 4am. My doctor has ask if I want a sleep prescription but I have put that off. Not wanting to go down that road. I have ask others in my Parkinson’s therapy group about sleep. The majority have some issue. On Rytary or something else. I believe it is one of the symptoms we have to live with. My opinion if Rytary works for the other symptoms I can handle the sleep issue.
Best of luck.

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

Hi, I experienced this as well the first week - the second week my doc recommended adding back into my nightly regimen carbadopa/levodopa ER} this worked for me. However, now that I am getting sleep (week 3) I've cut that ER in 1/2 and am only taking 1/2 dose (which is working) to cut it out completely.

The other issue that has emerged is extreme dyskinesia. I've never had it this severely and I'm wondering if my dose is correct - maybe too much.

Anyone else experiences this side effect and found a way to remedy it? Thanks, friends!

I would like to connect with someone taking Rytary. I have started Rytary this last month Im having trouble with low blood pressure.

@oronogo, I moved your comment about connecting with others who have taken Rytary for Parkinson's to this existing discussion:
- Is anyone using Rytary?
https://connect.mayoclinic.org/discussion/is-anyone-using-rytary/
What has your doctor suggested about managing the low blood pressure? Other than this side effect, has the medication been helping?

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?

Hello @joanneeckert

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

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?

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.

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?