Rytary

[Kachimom]

I would like to hear about how the parkinson's patients are doing who are taking Rytary. It is a new drug for PD and I'm anxious to hear if it's working for you. I'm a Kaiser Permanente medical group patient in California and they won't prescribe it for a couple of years. Sounds promising!

[tlongmire]

Kacihmom, my doctor just prescribed it for me but I don't start taking it for a couple weeks. I will switching my morning dose of Carb-Levo (1) 25/250 for (3) capsules 23.75/95 mg Rytary ER plus (3) capsules 36.25/145 mg Rytary ER.

Hugs, Terri

[Sadiesadie15]

I go up to Duke to,see my neurologist and he started me on Rytary a month ago. I have been titrated up to taking 1 capaule along with 1 Sinemet at 6:00AM, 11:30AM, 4:00PM and 9:00PM. I occasionally find I need 1 Sinemet around 2:30PM or 7:00PM but I am now taking at the most 4 Rytary and maybe 6 Sinemet. To put this in context, before I started the Rytary, I took 2 Sinemet every hour and a half to two hours even through the night. I am very happy right now with the help of Rytary. I will update you in a month or two and let you know if it is still working well or if it has created some problems

Sadiesadie

[Sadiesadie15 in reply to Sadiesadie15]

By the way, I am taking the 65/245. ( I think that is the milligram- it is the strongest dose)

Sadiesadie

[jmtolani]

I had absolutely no success with Rytary which I took for 6 weeks. It was inconsistent, sometimes it worked for an hour but that's about it. At some point, my doctor asked me to take it with my old Meds Stalevo 75 MG and that proved to be very helpful but it also made my side effects worse . Now , I am back taking Stalevo only. I am very curious to learn how are other responding to Rytary.

[adrienneb]

I started RytaryER a week ago---a single capsule of 48.75/195 mg, at bedtime, to replace Sinemet ER which was not allowing me more than 4 hours of sleep a night. Also on Sinemet 25/100 , 1 1/2 tabs at 7 am, 1 tab at 11,3 and 7pm. The Rytary has made a huge change in my off times---I don't even feel off until 11 am. I would like to take it more often, and have put a call into my MDS to see if that would be advisable. The off times cause tremor, achiness, and general malaise at just about 3 hours after a sinemet dose. NONE of that during 12 hours after Rytary. I actually feel normal during those twelve hours! Sleep of course is still a problem, although it has gone from 4 to 6 hours. I can live with that. Will be interested to hear others' experience. Like everything else about this PD snowflake, it seems to help some and not others. How long will it last? I wonder!

[Schells in reply to adrienneb]

First two weeks getting off sinemet and on Rytary (Neuro said cold turkey )was an absolute bear (stronger word needed here) But then I noticed I most always am ON. IF I go OFF, festinating gait happens with falling. I have noticed a little dyskinesia-but I had that with sinemet also. I take 1/4 tab of Klonopin to sleep. I go from 6:00 pm till 7 am next morning with no trouble. Even get a workout in. I hate pills - all meds- but I've come to learn I'd die without walking. Alreay brokemy hand by falling.

[Donzim in reply to Schells]

We switched immediately from Sinemet generic to Rytary at fairly high doses. A few days of not feeling 'right' was all the effect.

[bartogirl]

The neurologist at the University of Maryland would not prescribe it for my husband as he started recently Final Stages/He is 80 and has hallucinations and night terrors.SHe is weaning him off of Mirapex and will start taking him off of Stalevo and putting him on just levodopa-carvidopa.She wants him to start on Clonopin in one week.His BP is way too low and cannot maintain a decent weight.He is down to 126.She feels there is not enough testing or experience with Rytary in this country and feels the spray will be the most beneficial in the long run but down the road yet.

[Donzim in reply to bartogirl]

We used niacin 1000mg 3x to end hallucinations. It expands the blood vessels so monitoring BPwas in order. Since niacin gives a flush, people sometimes start with lower doses. my husband thought all his veins were worms and his body hair was being implanted by aliens and they ALL had to be CUT OUT. So many people have that there is a name for it...parasites is. It came from too much adrenaline being converted to adrenachrome which is chemically similar to LSD. My husband doesn't get the niacin flush so I gave him the 1000x 3 and in one day the hallucinations left and only reappeared if I forgot to give it. Read Abrahm Hoffner on niacin. Brilliant.

[stopnibbling in reply to Donzim]

great to read this. did you work up to that dosage of niacin in stages? was flushing an issue? thanks!

[Donzim in reply to stopnibbling]

I addressed the flush in the last paragraph.

[Schells]

I had a terrible time in the beginning. Neuro said NO to mixing sinemet with Rytary or I would get wild dyskinesia. I believe I take a small amount (not sure as the math is confusing) of Rytary 3 pills 3 x per day...no sinemet. But I have azilect and the patch. Exercise 5 days per week but also very active. Been about 6 weeks,,so far so good

[Hidden]

took it for 4 months

it was a wonder drug for me

until the side affects started

high high points

and low low points where i would cry worry about every thing

then the crashes started 2 3 or 4 times a day

had to stop are go crazy

[Hidden in reply to Hidden]

After 6 months of Rytary I am ready to get off this roller coaster. I cry and my body doesn't function right. I want to stop but my Nuero doesn't listen and wants to keep trying it. There is only 1 nuero where I live so changing Dr's isn't really an option. I have no quality of life anymore. May I ask what meds you are taking now for your PD and are you feeling better I hope?