[rd42]

I've been on sinemet since january 10. I'm taking 2 25/100 3x day. My first dose is at 7:30 and I'm on from 8:30 to 10:00. I take the next dose at 10:00 and I'm not on until after I eat, around 12:30 and it usually lasts till about 1:45 - 2. I take my next dose at 2:30 or 3:00 and I'm essentially off for the rest of the day, no relief from the third dose. freekin' sucks.


Are there any tricks to making the second and third doses to work?

Do any of you notice less of a response to dopa with each cycle during the day?

What are your cycles, every two hours, three hours, etc.?

Are you on all day or is it on off on off on off off off?


Thanks,
Robert
-sick and tired of this 5hit

[Conductor71]

Originally Posted by rd42

I've been on sinemet since january 10. I'm taking 2 25/100 3x day. My first dose is at 7:30 and I'm on from 8:30 to 10:00. I take the next dose at 10:00 and I'm not on until after I eat, around 12:30 and it usually lasts till about 1:45 - 2. I take my next dose at 2:30 or 3:00 and I'm essentially off for the rest of the day, no relief from the third dose. freekin' sucks.


Are there any tricks to making the second and third doses to work?

Do any of you notice less of a response to dopa with each cycle during the day?

What are your cycles, every two hours, three hours, etc.?

Are you on all day or is it on off on off on off off off?


Thanks,
Robert
-sick and tired of this 5hit

Robert,

I am on a 2.5 -3 hour tether with Sinemet. This is with trying common extenders like Mirapex or Requip; I seem to get a half hour or so extra with them during a brief honeymoon phase- then it's nothing,though I imagine it smooths out the ups and downs of levodopa. As for it working, I am extremely lucky that it usually always kicks in right away or within 15 min. When it doesn't work, I take 1/2 a 25 mg. Benadryl- don't forget it's not all dopamine. We end up with too much aceytlcholine and it is theorized that this is what causes motor symptoms like tremor. I pop 1/2 a benadryl and I"m "normal" - completely asymptomatic.

My levodopa used to fink out around 2 pm every day, so I would just take my dose a wee bit sooner and add the benadryl if needed. Now it seems that I get a good "run" until 7 or 8 pm. I always seem to end up then in this half on state; if I set still to read or what not , it makes it worse. I get up, move around and stretch a bit and meds will mostly kick in. My response seems to be related to stress or cortisol levels. I either can't get past my limbic system or when I relax my cortisol levels drop and I can feel myself slowly run out of gas.

I refuse to believe that the frequent dosage is entirely due to disease severity or advancement; I have only been on Sinemet for 2 years and only ever got like 3.5 hours tops out of it. I suspect several variables factor in including how we metabolize drugs.

For some relief, have you tried "Liquid Sinemet"? Dissolving it in liquid and sipping is supposed to be helpful...this is from a PD forum through U Toronto and there is a "recipe"- I think Rick has posted one here before- maybe search the forum here too.

The use of "homemade" liquid sinemet has long been used to help with the on/off fluctuations and/or those who do not get a quick reaction to taking a pill for L-dopa. REMEMBER: DO NOT CRUSH SINEMET CR - PER THE MANUFACTURER.

I really hate to think how functioning centers on pills, but at the same time I am grateful that they work- course my MDS is already pushing the idea of DBS and frankly some days I am so sick of it all, I say bring on the lead wires. I hold out though that the Duodopa pump system passes trial here soon-it's been in use in Europe for 5 years now.

Hang in there

Laura

[paula_w]

i was taking 2 25/100 every two hours, tapering off at night or evening but it was making me crazy. i added nortriptyline and it helped the peripheral weakness that was really unpleasant. before getting it, i was sidetracked with a prescription for aricept since you can't take nortriptyline with azilect [i felt that azilect kept me more focused.

PWP do not need acetylcholine for cognition problems while still functioning. Our cognitive problems are different -at least if we are not too old and in the stages that often occur with old age.

ok back to topic: after almost croaking on the aricept i finally started nortriptyline and it helps but makes you drowsy and more prone to just sit and stare for awhile before you realize you are doing that. it helps dyskinesia - a multi purpose drug.

then i asked for stelevo [i can't spell or smell] and found that it does prolong the ons, but is worthless after you've eaten. i take half 25/100 here and there to supplement the slow release and under the right circumstances i can stay on for more than 3 hours.

all bets are off when you have food in your stomach, i just keep taking 25/100 halves till i get on if i have to go somewhere. But i did reduce my sinemet intake overall and i am sleeping better with nortriptyline added to my xanax. i am elvis - but on the lowest dose of everything so there is still room to wiggle.

proof that food blocks stalevo because if i take it on a full stomach my pee isn't bright orange. my first dose in the morning looks so orange it's almost red.....that's more than you needed to know.

so now i take 2 or 3 stalevo a day [more causes a nervous stomach] and first thing in the morning i take a 25/100 with the stalevo to get on. i've reduced sinemet from 1700 mg to about 12 to 1400 mg per day and still looking for more reduction. i still get slurred speech and look goofy from sinemet, but i am sane.

[rd42]

Originally Posted by paula_w

[i can't spell or smell]

Too funny.

The cognition problems are driving me crazy. I could use some help there too. I started a new job and I have a trip to Ireland next week.

What kind of Benadryl do you take Laura?

Thanks for the responses Laura and Paula.

[stevem53]

Originally Posted by rd42

I've been on sinemet since january 10. I'm taking 2 25/100 3x day. My first dose is at 7:30 and I'm on from 8:30 to 10:00. I take the next dose at 10:00 and I'm not on until after I eat, around 12:30 and it usually lasts till about 1:45 - 2. I take my next dose at 2:30 or 3:00 and I'm essentially off for the rest of the day, no relief from the third dose. freekin' sucks.


Are there any tricks to making the second and third doses to work?

Do any of you notice less of a response to dopa with each cycle during the day?

What are your cycles, every two hours, three hours, etc.?

Are you on all day or is it on off on off on off off off?


Thanks,
Robert
-sick and tired of this 5hit

I've been having the same problem, and I am sick of it too

This is as good as any solution Ive tried so far

[rd42]

The MDS never mentioned the magic 8 ball to me. Must be a new method

[neilp02]

I know how you feel about this on/off cycle. I have been on sinemet now for approx 5 years. I wasn't doing too bad last year, but since the beginning of this year, I've had more problems, which also leads to foot and leg dystonia and also some cramping. I'm sorry, as I may not be of much help here, though, as I'm at the stage now where I am trying different things that, I've read that other people try to see what will work the best for me. I have learned a lot from some of the other posts already.

My program is Sinemet 25/100 dissolvable @ 3 times a day starting with the AM hours and then in the afternoon and rest of the day one everey 2 1/2 hours apart. I also am taking Azilect and now just started Mirapex. Like you, I've been having some off-on swings and afternoons and evenings sometimes are not good. All, I can say is keep checking in to all the alternatives both online and elsewhere. If you find something that works good, pass it along.

Take Care

New Member

neilp02

[neilp02]

Hi Laura
Thanks for your info on your dosage program. The liquid sinemet is something that, I'll have to keep in mind. During the past year, I've been experiencing more fluctations with on/off cycles and dystonia in my legs and feet. So, I can relate too a lot of things, I've seen here. I think in my case a lot centers around timing of the meds in the correct amount etc.

Thanks Again

[Conductor71]

it all ends in "You sunk my battleship!"

All joking aside, it is funny that you bring this is up because I posted on the YO Forum at NPF on the problem of Sinemet and the Magic Eight Ball School of Neurology. My theory is that is really all it seems to boil down to from diagnosis to treatment...here is the link - it is amazing to me that some PWP who respond well to Sinemet assume that all PWP respond that way?!? I was playing Norma Rae trying to get the YO group ticked off enough into taking a stand, it didn't work. YO Forum: PD and the Magic Eight Ball

Laura

[mantaray]

My experience: I'm recently diagnosed, but can recall having had symptoms as far back as 2006. I'm in a ramp-up phase with Sinemet, currently taking 4 25/100 tablets per day. I take one pill every 5 hours beginning each day at 5:00 AM, which means mornings are the worst because the medication has had more time to wear off the night before.

My experiences have been generally positive, but mixed. My biggest problem right now is getting control over a bad left-foot, big-toe tremor, which translates into a leg tremor - depending on how I'm sitting. Overall, the effectiveness of the medication seems to depend on a lot of factors - stress, diet, stress, sleep, stress. Have I mentioned stress? For me, stress has the dubious effect of overwhelming the medication, causing symptoms to emerge regardless.

So, yeah, there's a lot I need to do in terms of stress management and crawling out of the depression hole. Still reeling from the diagnosis - hoping I can learn to live with it soon, somehow. My neuro wants to reduce the Sinemet and add an agonist in a month or two, but I'm resisting.