[Deborah]

I never had any nausea with CL 1tab 4 times daily and I only had the generic; I didn’t notice any extra anxiety with Rytary, but had a tough time getting used to all that extra levodopa in my system; strong spasms and cramps and hardly any sleep. I would say it took a good month to adjust.  But now it’s really pretty good. I take 1 capsule 61/245 4 times daily at 7Am, 12N, 5PM and 10 PM.  I also take 1 capsule Gocovri 137 mg at 10 PM. My insurance pays something but my copayment for the Rytary is $400 and for the Gocovri is $580. The PAN is helping with a grant that will cover a few months but after that fund is exhausted, I don’t know what I’ll do. I’m thankful and resentful at the same time.

[Deborah]

After resisting CL/25/100 due to fears of dyskinesias like my mom had, I finally had to admit I needed something stronger than rasagilene. I took CL for 3 years with moderate success, but still had breakthrough tremors and shortened duration of relief. This spring a new neurologist prescribed Rytary and I really had a hard time accepting that constant levodopa would be good for me, but he was right. After a very difficult initiation, the Rytary dosage now works so much better than the immediate release CL. However, I did complain almost immediately of strong twitches, jerks, uncomfortable spasms, so I’m now also taking Gocovri, which has almost totally eliminated this random uncomfortable movement. The down side is the cost; my  Rytary copay is around $400, and the Gocovri is  about $580. I have a grant which will soon be depleted and I’ll have to decide how to proceed. My neurologist was not swayed to let me try the old formulary of amantadine in place of the Gocovri, but I can’t rationalize this expense.

[Deborah]

After watching my mother’s sad decline from PD over the years, despite her multiple drugs and strict adherence to MD orders, I was determined to avoid all medication for as long as possible for my own journey. After 5 years I was getting pretty desperate for help so I tried Azilect with no relief, requip brought me nausea, headaches, and apathy, so I started C/L 25/100 twice, then 3 times daily with good results. I was satisfied with this regimen for about a year until the dose didn’t last.  An added Neupro patch didn’t really change my discomfort. Still I avoided the recommended 4th tab, terrified of dyskinesia. This March, 2021, I saw a new physician who told me my information was faulty, that my remaining dopamine neurons would be better protected by taking Rytary 4 times daily for around the clock supply of C/L in a slow release form. The transition was difficult, to put it mildly. My complaints of severe twitches, spasms, headaches, insomnia convinced my doctor to order a lower dose, which is still not perfect, but is an improvement from the immediate release C/L. I still have frequent breakthrough tremors and sensations of being “off” prior to my next dose, but feel better.
My questions are:

1.  Is long term use of Rytary likely to increase my dyskinesias, which have subsided greatly with my lower dose (61/245 1capsule @ 7am, 12 pm, 5pm, and 10 pm)?
2. Does anyone use a 1/2 or full tab of immediate release C/L prn along with the Rytary?

3. Is anyone taking Gocovri also as an aide against the Rytary induced dyskinesia?  My doctor ordered it for me, but as a minimalist, I’m still reluctant to take anything I can avoid ( plus I hear it’s super expensive; I never started the free one month samples).

4. is there any literature besides the 200 person trial with Gocovri that documents long term effectiveness or side effects? How about long term use of Rytary?  As a retired RN, I need more evidence, both written and personal accounts from fellow PD patients.
Thanks for any and all input.

[Deborah]

I wish someone could explain to me the physiology of how PD messes with our emotions. Why, when one of my kids calls me from out-of-state, do my tremors start up?  I’m NOT nervous or anxious, or worried; I’m taking my meds so why am I shaking?  Why do I have tremors when I’m driving, or just slightly concerned about my husband’s reaction to some situation?  I totally get it that my tremors are working double time when I’m babysitting grandkids with or without help,  but on a normal day free of stress, it’s frustrating!  Why do I have so little control over my emotions?  For now, at least, I can keep hiding my wavering hand under the table or in my lap,  but it just makes no sense to me.  I must remember to be thankful it’s only my hand, and not my arm or whole body.

[Deborah]

For several years I have been taking the supplement Niagen, which is nicotinamide riboside, a substance purported to aid in the work and health of our mitochondria, cleaning out old and harmful substances. It’s supposed to increase our energy. My  son-in-law is convinced it helps him, but who knows? I have never felt a definite surge but I am thankful  for the slow progression of my PD and continue to take two tabs daily proactively. Has anyone heard of it or used it?