I have a question for patients who have had pd for about 5-6 years and are on Sinemet only. How much are you on and do you have a lot of offs and if so how long do they last and what do you do till you take your next dose and it kicks in.. I’m taking every two hours and even with that I am having of times.
I have tried amantadine , opicapone and entacapone but they have all made my symptoms worse. The future looks bleak unless can find a way to extend the on time.
Do people find that food has a major part to play in there ons. I don’t come on at all if I have eaten anything no matter what it is or how small. I only have one meal a day at about 5-6pm so I can do things in the daytime. I am alway hungry and sometimes eat something late at night which doesn’t interfer with meds
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Connie18
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I've been on sinement for six year's, after the first Year azilect was added. I take 1 azlect per day and 2 sinement every six hours with very little off time, though the time is increasing. My physical evals at the gym are promising. I've improved by 3 seconds over previous testing.
Hi Connie18:
If you haven't already, try an extended release formulation - C/L CR or Rytary.
I currently take:
Dose #1: 200 mg C/L CR + 100 mg C/L IR (240 mg IR equiv) @ 6 AM
Dose #2: 200 mg C/L CR + 50 mg C/L IR (190 mg IR equiv) @ 10 AM
Dose #3: 200 mg C/L CR + 150 mg C/L IR (290 mg IR equiv) @ 2 PM
Note: Some say 250-300 mg IR equiv is the max you can take in one dose and still get a benefit from it (i.e., the point of diminishing returns)... And I believe this to be true for me...
Food has a big impact on me. I try to eat only small meals/snacks before my third dose, and I eat most of my daily protein after my third dose.
If I am disciplined in my eating, I don't go off in this 12 hour period (i.e., 3 x 4 hour dosing interval)...
BTW, I was diagnosed in 2015, and I consider my "honeymoon to be over"...
PDNVA, I am having good resulta with RYTARY 3 X DAILY. Use MUCUNA PRUREINS through out the day. Looking in to Bemer. You familiar with Bemer? You from Virginia?
Almost 5 years since diagnosis. I take 1 25/100 CL and 1 25/100 CL ER every 4 hours 4 times per day. I have added .5 Mirapex 3 times per day in between doses. Still have some off times. Big meals kill my next dose.
It all depends on the person. Everyone is different. Before I had my DBS sugery I was taking 3 of the 25/250 four times a day (12). The MDS said he's never seen anyone take that much. But it was making me act out in ways like never before. After surgery I'm taking 3- 25/100's three times a day and still tweaking my c/l controlled release. I was diagnosed in 2011. You have to keep experimenting until you find, hopefully, what you can live with.
Diagnosed 5/2012. Take Rytary 2 x 23.75/95 mg four times a day. Considered a pretty low dosage. I do also take Azilect and 4 mg Neupro patch. Supplement 2-3 x a day w/ 1/2 IR CL. Off times 30 minutes to 2 hours/day. Have been listening more to my body in terms of dosage spacing. Doc wanted to add Gocovri for dyskinesia but I am reluctant to add another med. have stepped up exercise and find helps with dyskinesia.
I eat little to no animal protein during the day, reserving for dinner. Breakfast granola, nuts, coconut. Lunch sautéed veges maybe a corn tortilla. Snack potato chips. No dairy other than cheese.
I’m now taking half a madapor 4 times a day. Started with a quarter 3 times a day 3.5 years ago. I’m finding it doesn’t last as long, especially as I have a lot of stress at the moment (sick kid and crap husband).
Unfortunately it makes me squirm for about 10 mins an hour or so after taking it, so I have to go for walks etc so my coworkers and kids don’t notice.
I’m also testing splitting it into a quarter 8 times a day, although my neurologist was unhappy with me experimenting!
I will ask him again for controlled release but last time I asked he dismissed it saying it delivered an inconsistent dose.
I am 61 diagnosed in 2012. I am on (1) 25/100 ir & (1)25/100 cr at 6am, 9am, 12 noon, 3 pm & 6 pm. I also have the 2 mg neupro patch. The addition of the new pro patch was last month I’ve been on it for a month now and it seems to have cut my off time down to about an hour and a half from seven hours a day. Best of luck.
I'm almost 5 years in. Last year I lost my therapeutic window meaning any amount of Sinemet caused debilitating dyskinesis (I was only on 450mg ER a day). I had a surgery in Switzerland (pallidothalamic tractomy by focused ultrasound) six months ago and got my life back and now take 100mg ER twice a day. My symptoms are so much better and I can almost pass for a normie. Hoping to go back for side two of surgery next year and maybe completely get off meds (I still have milder dyskinesia on my untreated side from the 200mg ER a day and tremor and dystonia in my untreated leg). Since surgery I have no true off anymore - off is that my tremor is up on my right side and my fine motor is off in my right hand. Before deciding on surgery I tried Amantadine and agonists and could not handle either.
Thank you for the interesting info-glad to hear you had such good results! We will be looking into this in the future. The only Amantadine he can tolerate is by Bionpharma Inc and it works well for him but everyone is different. He takes Neuro-Mag at bedtime and sleeps well.
Diagnosed 10/21/2013, six years. I take 1 25/100 Sinemet CR three times a day, sometimes only once a day and sometimes only twice a day. I guess, compared with others, that is pretty good.
Hi Connie, I'm right at the 5 year mark and currently take c/l 250mg tab 5X daily, that amount barley lets me function, also started 2mg re-quip ER 5 months ago, ive lost 21 pounds this year from lack of food, not from working out 8(, id rather trade food for "on" time at this point getting about 1 hour "on" time per c/l dose, when first starting c/l i was getting about 6-7 hrs on time per 25/100 dose......now on top of that last few months major anxiety attacks, was just put on 3 more meds for high BP....ice cold hands and feet, getting 3-5 hrs sleep a night...God help us all...
My husband was diagnosed in 2012 and takes 1 25/100 Sinemet at 6am and 2 at 2pm. He also takes azilect .He is prescribed more medicine but does not take it. He is very active at 73 and never stops doing something from the time he gets up until he goes to bed. He purposely decided to try and limit his sinemet to stave off dyskinesia. He has none at this point.
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