Every Parkie has to go though the process of finding what drug cocktail works best for them. Maybe it’s a Dopamine agonist, with or without Sinemet. Then again it could the Neupro patch slapped your arm combined with Deep Brain Stimulation surgery. Or maybe brain surgery creeps you out, but the thought of Duopa, a continuous Carbidopa and Levodopa gel being pumped into your small intestine sounds like a better fit for your life. Then right when you find the perfect cocktail for your individual Parkinson’s symptoms, it works for a while and then, (spoiler alert) just like a degenerative neurological diva… your disease progresses and what worked for you in the past is not cutting it anymore.
If you have been following me on any social media platforms this last week, you would see that I was trying to adjust my Parkinson’s cocktail when I started having a side effect from my Amantadine. The purple fish-net print on my legs was interesting and a good conversation starter, but did nothing for my self-esteem. So while working with my Movement Disorder team, which a huge part of my PD Wolfpack, we decided to try the new drug Rytary, which was a combination of an immediate and extended release Carbidopa and Levodopa. The big catch with this medication is finding the right conversion from your current medication to the new dosing of Rytary, which can take a while to get perfect… the best amount of symptom control with as few side effects as possible.
How did it go you ask? Well the first day, I had Dyskinesia so bad, I couldn’t sit still. Which was sign of being over medicated. So my team decided to lower the dose. Then the next day, I had about 90 minutes of “on” time ALL DAY! At this point, I was feeling beat down although it was an enlightening moment. My head was filled with thoughts like, “How did people handle PD before Sinemet? I see why Parkies can start to become reclusive… it’s hard to even leave the house feeling this bad. I don’t know how I could work my job, let alone do daily errands. I hope that Fro Yo gives me some relief.”
Now today was the 3rd day on Rytary, I was faced with a body I couldn’t rely on. Each hour, my symptoms were different. Then the anxiety started to kick in and I felt like I was going to have a panic attack. I made the choice to go back to my old drug regimen and write Rytary off as not a good fit for me. But that doesn’t meant that it is not a medication that many have benefited from.
I love all my readers and appreciate the support during this challenging time, but one consistent theme that kept coming up, was other Parkies choosing not to try Rytary out of fear that they will have the same side effects that I experienced. Although I can absolutely relate to having the comfort of sharing experiences to help make educated choices for your treatment. Our fear can’t stop us from being our own little guinea pigs and checking out all options to maintain a good quality of life. What medication work wonders for me, might make others worse. This is due to the fact that we are all like snowflakes, there are no two Parkies alike. We all are made up of our own unique brain chemicals and bodies, so why would we think that medications would respond the same way they do in another person? Just like most medications out on the market, some are hit and miss. So my belief is to educate yourself on treatment options available for Parkinson’s disease and then bring your ideas to your Movement Disorder Specialist. This will allow you to work as a team to find the drug cocktail that is the best for you… and you’re becoming an advocate for yourself, not just a victim.
Hello everyone! Rytary was great for my hubby.. But then he got the DUOPA pump.. what a game changer! He has had it almost 5 yrs and wouldn’t change for anything. He did have to use Rytary in the hospital due to Covid Restrictions ( noone wanted to take on the responsiblity that I do everyday )… but he managed just fine ( 4 caps every 4 hours.. total of 16 ). We keep it as an emergency med in case of pump malfunction ( once in 5 yrs and they overnighted a new pump_ ). or whatever might delay the use of him pump. Great product! Before that, he was on 32 pills a day, between sinemet and comtan.
Toni,
That’s so cool that your husband has found something that works for him. I’ve heard good things about the Duopa pump. Thank you for sharing.
I just had a rough patch trying to take Rytary. We tried tweaking the dosage for a month and I finally awoke one morning and said I’m NOT taking it today. I tried reaching my Movement Disorder Specialist and didn’t get a response so I went back to my old Sinemet dosage. Two days later I got a response and my DR understood but says he would like me to try one more time at a higher dose. I’m very reluctant to do so. The first three days I could hardly move. Freezing almost every step. Constantly increasing the dosage I never achieved any consistency with my symptoms, I was either “amped” up with Dyskinesia or off and could hardly move. I got very depressed and didn’t have any desire to do things for fighting to move. I’ve also had the lovely side effect from Amantadine. Trying to figure whether to take it or not? I’m thinking about getting a second opinion for I am reaching the 10yr mark since diagnosis and things seem to be changing. I see this is an older blog but I just came across it on line researching about Rytary and it gave me some peace, and I wanted to let you know. I would love to obtain your help/advice and communicate with you if at all possible. Hope to hear from you!
Cathy,
Wow! I can see why you wouldn’t want to give Rytary another chance and I would say, go with your instinct. No one knows your body like you do. If Rytary didn’t work for you, that’s ok.
You could try Stalevo. Or just stay with you regular Sinemet (Carbidopa, levodopa) and then just add Entacapone to your regular dose.
These are just some suggestions to bring up to your Neurologist. Hope this helps! Thanks for sharing your story.
Sinemet gives me dyskensia so I decided to try the herbal form (natural l-dopa) called mucuna pruriens. A speaker at the 1st World Parkinson Congress spoke about it. just google it. I buy it a Swanson Vitamins for abot $12, and take one capsule every 2 hours. I still take 25/100 Sinemet and amantadine first thing in the am.
I have called myself Perkie Parkie for several years, since my last name ia Perkins, but changed it, since we share the name. I have a complete file on all drugs related to PD symptom control. Let me know if you want me to email it to you.
Wanted to update you on my husband’s trial of RYTARY. He, too, was afraid to try something new since you had such a bad reaction, but it has been an absolutely life changing thing for him. He is now not going to have the DBS because this new drug is the best thing ever for him 🙂 he takes 16 pills a day ( 4 pills 4x daily) and none at night..before he took sinemet and comtan around the clock.. He has had parkinsons for 8 yrs diagnosed, but several years longer. Best of luck to everyone.. hoping everyone finds a drug for them.:)
What great news!!! I am so happy that he has found something that works for him. Best of luck to you two and thanks for keeping me updated!
Thank you 🙂 the best to you , also 🙂 thanks so much for your site and sharing 🙂
What RYTARY dosage? Are you still taking it? What other drugs do you take? Sinemet, Mucuna Pruriens? Thanks
My husband is waiting for his RYTARY to arrive.. been watching for your posts of your experience. He is considering DBS, but has to have the “testing” to see if he is a candidate. Nervous about trying a new drug since he has been on sinemet and comtan for about 5 yrs. (16 sinemet and 8 comtan daily)….Wish us luck! thanks everyone for posting your side effects.. I will know what to look for.
Allison,i didn’t realize that you were having so much trouble with Rytary. As you know I was having trouble at first but then realized that I had skipped my lunch dose 2days in a row. I then was more careful and took each dose properly and have found it to be good for me. Let’s go for fro-yo soon…I’ll buy.
You had me at fro-yo! 😮
Reading about your experience is a great benefit. Thanks for putting it out there so succinctly. I particularly like your caution that we should educate ourselves to new developments in pharma but we should also be aware that not everything works for everyone. And, of course, our health team is critical to making decisions about changes – starting with our movement disorder specialist neurologist. Thanks again.
After getting my DBS on end of May there still many adjustings to be done with the device itself as well as with meds. I noticed that I started to observe my body’s reactions too much, way too much and every bad moment made me feel very down. It took me some time basically just calm down and slap myself (mentally) to make me realize that I just went through something huge and it will take a lot of time until the right balance is found. So patience is important.
Thank you, once again, for your words. They definitely give me strength!
My legs looked like that one summer. I loved Amantadine, but not the purple, swollen legs!
I meant stalevo
I’m so glad to read this!!! I had a bad reaction to rotary also!! Hallucinations, buzz are behavior!! It took me awhile to convince my family!! I m back to stakeholders!!!
Adderall causes the same thing-livedo reticularis
Hope you find a balance in your medication ! Sure that in short time it will be over… A big Hug ! and patience…