Is anyone using Rytary?

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?

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

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’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

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.

hi -i’m new to the group and started taking Rytary a week ago. It does expand my on time. But I am suffering from tremendous insomnia. We started when I started taking rytary. Has anyone else experience this and if you have, have you found anything that has helped. Having more on time is important I probably won’t be able to enjoy if I can’t get any sleep 🙂 thanks everyone for your input

Unfortunately, Rytary didn't work for me. However, I have had PD for 5 years and have a very sensitive system when it comes to PD meds. Sometimes I think I have tried all combinations of meds but continue to strive for the perfect fit. With that said, I believe over all that I have seen more positive than negatives comments on Rytary

My sister has just started Rytary and neurologist is still trying to find the best dosage for her. Recently because she fell and went to the ER, the neurologist there prescribed for her to take Pyridostigmine (brand:Mestinon) 60 mg , to taken half tablet 3x d.
Does anyone here take this medication which is essentially prescribed for Myasthenia Gravis?

Hello @rossellini and welcome to Mayo Clinic Connet. I so appreciate you adding to our discussion on Rytary. It sounds like you and your doctor found a dosage that works quite well for you. Congratulations on persisting in this way and working with your doctor.

As this is your first post on Mayo Connect, I hope that you will post a little more about your journey with dystonia. Please share as you are comfortable doing so.

I look forward to getting to know you better. Have you also had a diagnosis of Parkinson's? Do you see a movement disorder specialist?