Rytary

[Ep0522]

The neurologist switched me from senimet IR..to Rytary about 10 months ago. I feel I have given it a.good try, but am getting very despondent. It either gives me debilitating dyskinesia or doesn’t kick in by every other dose. I have 145’s and 195’s and was told to work with them to figure out what worked for me. I am supposed to see the neurologist in about two months I have already tried sinemet ER and it worked well for quite a while, but was having to take it every two hours, as I was diagnosed twenty years ago. As far as the sinemet IR it worked well except the Dr. did not want me to take over six pills a day and I was taking 8. Any suggestions would be appreciated..

[Mogul1]

I take 6 195’s and 2 145’s a day. 2 195’s at 7AM, 11AM, and 1 145 plus 1 195 at 3PM and 7PM. I also take 1 mg of Azilect at 7AM.

No two cases are the same. I’ve been trying to dial these in for years and still get frustrated. For me, adrenaline and fatigue use up Rotary which results in unwanted off time. Azilect is more reliable. I would recommend Azilect.

[Ep0522 in reply to Mogul1]

Mogul1:Thanks for your response. I read some of your past posts and agree that stacking is a big problem with Rytary. Also find that fatigue uses up Rytary. Is insomnia an issue with you?

[Mogul1 in reply to Ep0522]

I’m laughing! Reading this at 5:40AM West Coast. Yes.

[Ep0522 in reply to Mogul1]

Figured you needed a good laugh 😆

[Mogul1 in reply to Ep0522]

Thanks! You are a sweetheart!

[Ep0522 in reply to Mogul1]

Hi! Sleeping any better.? I quit my Clonazapam and am thinking of going back on it. I’m very sleep deprived. Only sleep two or three hours a night.

[beehive23 in reply to Ep0522]

imo do whatever you need to sleep..without sleep everything goes to crap. ive had pd 20 yrs now im 53 i sleep with temazepam seroquel and clonazepam. hang tough.

[Ep0522 in reply to beehive23]

Hi Beehive: Like you, I have had pd for 20 plus years. So sorry. You are so young. You take a lot to sleep! Do you take C/L ?

[beehive23 in reply to Ep0522]

yes i do....i take 25 mg seroquell 5 mg temazepam 1mg temazepam

[Mogul1 in reply to Ep0522]

Hi Esther, good to hear from you! Sorry, but it sounds like we are in the same “sleep boat”.

I get up at 7AM to take my first meds of the day. Some toast and coffee

(Yes, coffee, I know!) Get caught up on current affairs and go to bed around 9 AM and sleep until 11AM or so. That is usually my best sleep of the day. I also wear a masque to block out the light. That helps. If you. Don’t have one, I would recommend one for use any time.

Other than that, I take magnesium, zinc, and melatonin a couple times before bed.

There’s a Dr hear in the Seattle area who wrote a book titled “Sleep Through Insomnia”. Do you have it? It’s pretty good Do You Have It?

Pretty good book, but I had trouble reading it…put me to sleep 😴.

Marty

[Juliegrace]

If the Sinemet IR was working fine it makes sense to go back to it. There are many schools of thought about how much levodopa is too much. Royprop has posted extensively on his journey to get his doc to prescribe a higher dose that he finds necessary to function. He recommends the book in the link below as a tool for better working with your doctor. Maybe it will help.

amazon.com/New-Parkinsons-D...

[Ep0522 in reply to Juliegrace]

Thanks Juliegrace!! Will check it out.

[Buckholt]

Strange that your doctor took you off a regime that was working for you to one that isn’t? From what I’ve read here, 8 pills a day and more is not unusual .

[Ep0522 in reply to Buckholt]

Buck Holt: Totally agree!!

[park_bear in reply to Ep0522]

Agree likewise. "Number of pills per day" is a completely arbitrary limitation. I would go back to the MD and insist on being provided what works.

[Hidden]

Hi Esther51:

Regarding Rytary and the dyskinesia, have you tried increasing your inter-dose interval?

Regarding Rytary and "doesn’t kick in by every other dose", are you sure you are not being effected by dietary protein? To diagnose this, try fasting, or just eating fruit for a day (ie., very little protein).

[Park4me]

I am where you are, fighting with the Rytary and it just not being consistent. I’m really considering DBS surgery

[Ep0522]

My neurologist is now insisting that I take three 145 Rytary four times a day to smooth the delivery. It gives me terrible dyskinesia and headache. Anyone take it in different doses during the day? Just wondering. I find I do better at different amounts.

[Ep0522]

Back to what we discussed three years ago. Is anyone on a high Rytary dose? I will be discussing this with my movement disorder doc next week.