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Old 03-25-2015, 04:00 PM #1
schwad01 schwad01 is offline
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Default Rytary Dosing and early experiences

Hi- I am a cc physician who was diagnosed 6 years ago at age 41--I have not had tremor or dyskinesia but certainly have significant off time-progressive over the years. I had relied predominantly on Stalevo---before i switched this weekend to Rytary I was taking C/L- 150 am -200 comtan and then C/L 100 with 100 Comptan at intervals--total 5 doses/day-not satisfied! My early experience with Rytary has been positive--despite switching "on a dime" and having a pretty bad viral infection- I am significantly better. I started 23.75/95 (4 capsules) TID--but noted that I was a bit "hyper" with this dose and my sleep was not as good. I changed to Rytary 23.75/95 x 4 iat 6-7 am--x3 approx. 11 am--x3 approx 2-3 pm and x2 6-7 pm---so I am taking the same toal dose but have been less wired in the early afternoon and have slept better----tel me what you think?---I obviously don't want to increase my risk of dyskinesias--experience is obviously limited but i would think that the lower exposure during the nightime might actually be better--any thoughts????
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Old 03-26-2015, 09:40 AM #2
soccertese soccertese is offline
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Quote:
Originally Posted by schwad01 View Post
Hi- I am a cc physician who was diagnosed 6 years ago at age 41--I have not had tremor or dyskinesia but certainly have significant off time-progressive over the years. I had relied predominantly on Stalevo---before i switched this weekend to Rytary I was taking C/L- 150 am -200 comtan and then C/L 100 with 100 Comptan at intervals--total 5 doses/day-not satisfied! My early experience with Rytary has been positive--despite switching "on a dime" and having a pretty bad viral infection- I am significantly better. I started 23.75/95 (4 capsules) TID--but noted that I was a bit "hyper" with this dose and my sleep was not as good. I changed to Rytary 23.75/95 x 4 iat 6-7 am--x3 approx. 11 am--x3 approx 2-3 pm and x2 6-7 pm---so I am taking the same toal dose but have been less wired in the early afternoon and have slept better----tel me what you think?---I obviously don't want to increase my risk of dyskinesias--experience is obviously limited but i would think that the lower exposure during the nightime might actually be better--any thoughts????
hard to comment, seems good you can eliminate the COMTAN? does your neuro consider you a "guinea pig"? wonder if patients will experiment adding regular C/L in 50mg increments since easy to split and cheap vs. adding a rytary cap?

from my readings and from better relief from continuous delivery dudopa pump, less drug isn't the goal but keeping l-dopa brain levels constant. especially concerning dyskinesias.
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Old 03-28-2015, 08:16 AM #3
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Default Dosage

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hard to comment, seems good you can eliminate the COMTAN? does your neuro consider you a "guinea pig"? wonder if patients will experiment adding regular C/L in 50mg increments since easy to split and cheap vs. adding a rytary cap?

from my readings and from better relief from continuous delivery dudopa pump, less drug isn't the goal but keeping l-dopa brain levels constant. especially concerning dyskinesias.
I just started Rytary 195 strength. Trying to cut down on number of pills/expense. Does anyone know for sure if 1 of the 195 strength is basically equal to taking 2 of the 95 strength in all ways (minus the 5mg difference)?
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Old 04-01-2015, 10:25 PM #4
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Smile Rytary

I've been on taking Rytary for 1 month. I take 3 capsules of 47.85/195 MGs 4 times/day ( take @ 0600, 1000, 1400 & 1800). It is working very well. I have almost no wearing-off like I did with regular C/L but seems very sensitive to protein. If I eat a high protein meal within less than 1 hr from taking the capsules, I suffer wearing-off much more than when I wait 1 hr after eating. Otherwise I'm very happy with Rytary!
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Old 04-02-2015, 08:53 AM #5
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Originally Posted by Slumpy217 View Post
I've been on taking Rytary for 1 month. I take 3 capsules of 47.85/195 MGs 4 times/day ( take @ 0600, 1000, 1400 & 1800). It is working very well. I have almost no wearing-off like I did with regular C/L but seems very sensitive to protein. If I eat a high protein meal within less than 1 hr from taking the capsules, I suffer wearing-off much more than when I wait 1 hr after eating. Otherwise I'm very happy with Rytary!
Slumpy217
Slumpy,
Trying to compare things, wondering what strength of regular C/L you were taking before? Glad things are working nicely for you...

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Old 04-02-2015, 03:27 PM #6
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Default Recommended rytary dosage

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Slumpy,
Trying to compare things, wondering what strength of regular C/L you were taking before? Glad things are working nicely for you...

eds195
I was taking 18 (eighteen) of the regular 25/100 C/L per day including waking up at 1-2AM to take a couple.
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Old 04-02-2015, 05:55 PM #7
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Thanks Slumpy, again, glad it's working well.............
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Old 04-04-2015, 11:57 AM #8
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Originally Posted by Slumpy217 View Post
I was taking 18 (eighteen) of the regular 25/100 C/L per day including waking up at 1-2AM to take a couple.
Slumpy217
How long had you been taking the 18 C/L 25/100?
Did you experience any dyskinesia on regular sinemet? On Rytary?
I have been taking the same dose of Rytary as you are for two weeks but I experience considerable dyskinesia especially at the beginning of a dose. I tried taking only 2 per dose but that wasn't enough.
I have also started getting severe cramps in my feet likely distonia. Have you experienced any of that?
Thanks
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Old 04-14-2015, 11:07 PM #9
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Default Dyskinesia

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Originally Posted by ORBear View Post
How long had you been taking the 18 C/L 25/100?
Did you experience any dyskinesia on regular sinemet? On Rytary?
I have been taking the same dose of Rytary as you are for two weeks but I experience considerable dyskinesia especially at the beginning of a dose. I tried taking only 2 per dose but that wasn't enough.
I have also started getting severe cramps in my feet likely distonia. Have you experienced any of that?
Thanks
I was taking 18 C/L for about 6 months 3 yrs ago and then I had DBS surgery and that cut my C/L in half but over the last 3 yrs C/L slowly increased back to 18/day. I have been taking 18/day since May 2014 until I switched to Rytary on 3 March 2015. I currently have only minor dyskinesia. When standing I tend to rock back and forth but as soon as I'm aware of the "rocking" dyskinesia, I can stop it. I also have some dyskinesia in my mouth and purse my lips. Wasn't aware these were dyskinesia until my last appt with my MDS when he observed them and told me. Only cramps I have are in my calfs and only when I wake up in the morning and stretch my legs. The stretching causes the cramps but that's the only time I suffer cramps I've suffered the cramps and rocking on both regular C/L and Rytary. I haven't noticed any difference.

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Old 04-16-2015, 02:26 PM #10
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Default Rytary update

I just got back from my appointment with my Neurologist. I have been on 3 caps of 48.75MG-195MG 3 times a day. My doctor was interested in my feed back because I was his 1st patient taking it. You can see my other posts to get a profile on me I won't repeat what was previously Posted.
I took the aforementioned dosage at 8AM-4PM-12PM ie. 8 hr intervals. The medication was effective for 5 1/2hrs so I would supplement it with 1 carb-lev 25-100 at the end of the 5 1/2 hr duration which got me thru to the next Rytary capsules. I only supplemented the 8AM Rytary and he 12PM Rytary. This worked reasonably well. After a month I found the Rytary caps had no affect on me while I was sleeping. I would get up several times during the nite to go to the bathroom and I had trouble making it to the bathroom. It was if I had no drug in me at all. So on my own I changed my intake for the next 15 days until I saw my Neuro again to 6AM 11:30AM and 5PM 5 1/2 hour intervals and I did not take anything else during the nite because it had no affect. I still had the problem of almost falling down each nite while traveling to the bathroom.
I visited my Neuro today and he had no problem with my switching the intervals to 5 1/2 hrs but he was worried that i could fall down in the nite. He said you could take the Rytary 4 times a day at 5 1/2 intervals but that will no help your nite time problem that the Rytary does not work while you sleeping so he put me on a delayed carb/lev 50-200MG at bedtime to see if that would get me thru the nite.
Oberservations and other side effects:

I had more nausea especially at first while on Rytary. This has diminished but I still have some.
Ryatary is affected by the food you eat more than Car/Lev. Meat drastically impacts Rytary's effectiveness.
Other foods have some impact I won't specify because it is probably an individual thing.
You should try to separate the pills and the food you eat by 1 hour.

Overall I am pleased with the Ryatary it is a big improvement over taking Car/Lev every 2 hours.

I hope there was some benefit to you from my observations this is a nasty disease and I wish the best for you.
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