My husband has been on Rytary since 11-19-19! Sinemet for 20 years before! We changed bc he was freezing a lot and we heard good things about Rytary! He has still been freezing, but under control! His 1:00 pm time had been his hardest so we upped it from three to four pills (48.75-195mg) and left the other times the same! Did well so we bumped his other two one capsule to control his freezing at the other times daily.(1month ago). Yesterday he fell twice and once was off a rocking chair! Sat down, fell asleep immediately and rolled off the chair! Banged himself up, but okay! Fell again at night getting water! My question:
Could upping the pills by 1per setting 3x day cause falls, hallucinations, freezing more, sleeping more, dementia more?
We cut back by one this morning and will do the slow motion for other two? Seems like a lot of changes from 3-4 pills x3times daily, but what do I know? He has been stressed and I know this is a contributing factor, but this is a new stage
Anyone out there experienced Rytary side effects? Thanks so much!!!
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grannma
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When I started Rytary, I felt overmedicated, and had "sleep attacks". My dosage was decreased. After a while I had a better sense of when to adjust upward. Now take 48.75/195mg 3-2-3-2. If I'm needing to drive 30 or more minutes, I stagger my dose. I don't have freezing - mainly tremor, back and thigh rigidity.
Hi Katherine, did you adjust Rytary yourself or doctor did it for you. That does it mean 3-2-3-2 ? Is this capsule or hours? I started to take Rytary : my doctor told me every 4 hours 3 capsules 48.75/195 I tried only 2 days . Rytary only worked 2.5 hours instead 4 hours , after 2.5 I started to have some panic attack’s because doctor told me not to take any pills during these 4 hours interval and then I got terrible dyskinesia at the second night. After this terrible experience my doctor told me it is not for me. Do you have any advice?
3 capsules (8AM) - 2capsules (12:30PM) - 3 capsules (4:30PM) - 2 capsules ( 9PM). My MD doctor suggested this when, at a lower dose, I had increased tremor and bad restless "foot". I had increased the intensity of my exercise, and the higher Rytary dose helped to cover me. I will often stagger the dosing times for the 3-capsule doses. For instance, yesterday I took 2 capsules at 8AM, 1 capsule an hour later. Sometimes 3 capsules make me sleepy and sluggish, resulting in my not wanting to exercise, so that's why I started staggering those doses, while keeping the dosing time for my next dose at 12:30. My Dr. has not heard about the dose-staggering, but since I end up with the same total dosage, and I feel I function better, I don't think he will mind - of course, I'll bring it up next time!
It's taken about 1 1/2 years to feel stable on Rytary. I do appreciate that, for me, adhering to "minimize protein pre and post doses"is less important. And I don't get the GI discomfort I used to get with Sinemet. That said, I do take 1/2 a 25/100 Sinemet if I feel my restless "foot" coming on, now that I know it's part of my "off" profile. That only happens maybe once a week or even less now.
I also take 200mg Thiamine HCL (for a year now) and am not sure how much that is contributing to the equilibrium I'm enjoying right now. Also Selegiline each AM.
Hi Grannma. I have been on Rytary since April 2019 and still adjusting. There are other people on the forum who have achieved great success with this new medication.
I have not such success. Maybe your husband and I are on the same boat and we are one off cases with inadequate response.
Hi pdpstient, after posting yesterday We went for a walk. ehen we returned,,he csat in our rocking chair and immediately fell asleep! I looked over, he was really shaking and then rolled out of the chair. His head landed on the tile, I thought for sure I had lost him, but he woke up and got up on his own! Cut his hand and scraped his head... nothing broken , but my heart going through it!!!
You have given me information to pass on in April when we see a “ movement specialist! He is supposed to work with medication,,,, new! He has neurologist, but I guess the movement is new! His neurologist is a strictly sinemet dr. Doesn’t believe in Rytary so after 30 years we
Are switching to movement.. April 1st... will let you know! I better get documenting
We dont have rytaryy in my country but i do know that Sinimet or C/L the ingrediant can cause hallucinations and tiredness / sleep attacks.. whar strength is the pill you upped it by?
I've been on Rytary for 4+ years and in general it's been good for me. My dx was 12 years ago, so I'm not new to PD. Recently, I've been experiencing some problems with more "off" periods. Instead of adding more Rytary (which is still L/C just time released), I've cut back and the "off" periods have mostly cleared up. I do have more tremors now but they are relatively mild.
I believe that "off" periods are caused by too much L-dopa, not too little. I think it's the brain's last defense as it tries to cope with too much external dopamine. Our brains were not meant to receive so much from external sources. One analogy might be all parts of a car's engine being flooded with oil instead of it being supplied as designed. This is just a theory though. Also, I don't think it's at all limited to Rytary; it's a very common condition everyone with PD and taking L-dopa seems to run into eventually.
Thank you all for your quick responses! I know a lady the backed off Rytary (from 3pills to 1) bc her husband slept right after taking 3pills. Since changing the dosage, his up time has been so much better!
Our doctor said Rytary may need tweaking and after reading JerMan22, we will try ! My husband falls which is real scary for me, the caregiver! I also find stress triggers his “off times”Just having to be around our grandkids for a long period of time sets him off!
I thank each of you for your valuable information, we are all in this together-a real team!
I have experienced similar--sometimes in the morning after exercise, bad off periods, but if I wait 30-45 minutes, sometimes I am on again. Interesting theory about too much dopamine. I will pay attention to that.
I have also cut back slowly on my dosages since starting Rytary in June 2017. I take 1/2 C/L 3 x day between Rytary as a larger dose of Rytary doesn't last any longer than smaller dose, but I find I need a boost between Rytary dosages. My neurologist has approved this.
I do pretty much the same and it works well as long as I don't take too much. But taking 50mg or 25mg (L-dopa) doses now and then lets me tailor it to my needs and still cut back on the overall daily amount. I just break a 100mg pill into 4 parts. You should not try to divide the contents of Rytary capsules into smaller doses though. They warn about that.
Also, keep in mind that when you're switching between Sinemet and Rytary, it's not a simple 1 to 1 translation. There are tables showing how to find what your new dose should be and a professional should do that.
My husband recently died. Every time we thought we had an answer for something, something new popped up. One can never , ever depend on anything to stay static, and I have to say, it just gets progressively worse. Rytary worked better for my husband than anything else did. He also had hallucinations, probably caused by the Rytary, but his worst moments were when he would forget to take it close to on time..
Good morn, I'm 57 diagnosed 3.5 yrs ago.....Its all a crapshoot how a med effects each person especially when it comes to hallucinations With me on 250mg Sinemet 5 times a day, ( every four hours ) for about a year now, off times are around 30 min between doses, sometimes only 10 min with my 6am and 10am doses, and ive been getting mild hallucinations, small objects moving slowely on the wall or floor, this has been happening for about 6 months now, does not happen all day long, peobably 4 or 5 times a day on average, and mild ringing or bird-like churping in the ears from time to time, have gotten used to both, the trick is not focusing on them that only gets you going in the anxiety level, just execept what is, but a lot easier said then done for sure....
I would ask my husband if he was seeing ants crawling on the baseboard, that's how I knew he was having hallucinations he wasn't talking about. At it's worst, he often"saw" many people all over our property and he was afraid they were going to take it away from us. I had to go to the county recorder to prove to him that no one had put a lien on it. I was unable to ever truly convince him that a trailer wasn't moved 3 feet in the glen, that there wasn't a carnival being set up in our yard.
So I’m very interested in the fact that some on here have taken both CL and Rytary as a combination.... I actually noticed that when my dad switched over to Rytary he had already taken two doses of CL and at night took his Rytary dose and that was the best version of him in a while. He’s had PD for 6 yrs now and just recently experienced random days of not being able to use his right leg. So neuro recommended Rytary. But after his 2nd wk noticed hallucinations and too much sleeping one day then very little sleep the next day... lots of confusion and almost no conversation- then one day he had tons of understandable conversation- lots of dyskinesia. So needless to say I don’t think this is for him. He was taking 2 pills 3 x a day. We put him back on CL and up that dose - he was only taking 2 pills /2 x day and now it’s 2 pills/ 3 x day. My dad had never experienced hallucinations and that caused him stress which caused him to shake more.
My wife and been on sinemet and primapixel since 2003 in April of 2018 doctor give her Riotatery. this was taken with her carbo levodopa and Mucunna and not reducing any of it and it made her very very sick for one week now after two years she cannot touch, levodopa in any form it will make her sick it was too high of a dose after talking with other people so that's the boat let's the boat where in. He also gave her mestinon in high dose at some time he gave ryatery and she has been severe pain and mostly paralyzed to this day and have found no one to help her. She take no meds now except pain meds.
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