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Old 10-03-2009, 12:29 PM #1
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Default Sinemet vs Sinemet CR: Your Experience?

I am now taking 1.5 tabs of regular Sinemet 10/100 3 times a day, but am thinking of adding Sinemet CR to my morning meds, to get me through the wearing off/ boot up period between my 6:30am dose of Sinemet and the 9:30 dose of Sinemet.

The 6:30am dose starts wearing off around 9:15, then I take another dose @ 9:30-- which doesn't seem to really kick in until around 10:15. This means I have a 60 minute window during which it is harder to type, think & speak-- and I have painful leg cramps, too. (dystonia?)

Mon-Fri, I work 7-11am out of my home office as a service rep for a large ISP, working over the phone. That 1 hour of painful leg cramps, increased tremors, difficulty typing and slowed thought and speech is especially difficult then.

My specialist has prescribed Sinemet CR at a 200 l-dopa level, reasoning that it will actually metabolize at around 168 mg of l-dopa, the closest he can get to the 150mgs of l-dopa I currently take in a dose. I would take the SInemet CR at 6:30am, along with 1 or 1.5 tabs of the regular 10/100 Sinemet.

Does anyone have personal experience with adding Sinemet CR to your usual intake of regular Sinemet, as far as:

* how long from ingestion to boot up?

* how long it stays on?

* specific side effects you have experienced?

* things to be careful of/ watch out for?

Thanks in advance for your input.


George
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Old 10-03-2009, 01:21 PM #2
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Default Curiously George

First of all, if your neuro is seriously trying to convert with that precision, he is just fooling himself. It is not just a coated tablet but rather a polymer matrix that will behave entirely differently. So it's trial and error time. You have to find what works for you.

The first thing to do is to minimize the initial wait to "on". Read my post on using peppermint here for Pavlovian conditioning. Another tactic is to try to speed up your gastric emptying since levadopa is absorbed in the small intestine. You might try ginger for that.

Finally, avoid that "off" completely, even if you have to take extra to do it. It is far harder to climb up out of that trough the second time and the roller coaster effect is a problem of its own.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-03-2009, 04:27 PM #3
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Hi George,
It is always difficult getting the timing and balance just right, and I have only rarely achieved a good seamless transition throughout the day! I was on sinemet plus and cr for about 3 years, the cr is less readily available, and there is not a straight correlation between the two (a 200 plus is not the same as 200cr, the cr is about 2/3rds the strength).

Initially I did well on this, but over time became quite under-medicated, and had a lot of sleepy patches through the day, and was rather unmotivated.

Was changed to entacapone and regular sinemet, and while the offs are a lot more off, if I am careful to take my next dose before I notice myself going off then there is a relatively easy transition.

The trouble for me with CR is I didn't go off enough to realise that gradually I was becoming more undermedicated, it was other people who noticed I was not doing as well as before, for instance since the meds change I have lost the facial masking that had worsened a lot, and have a smile again!

I could have upped the CR, but for me the sticking point was not the physical stuff, but the apathy and brain fog....

Hope this helps in some way, we are all different, and what works for one may not for another.

Best wishes
Lindy
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Old 10-03-2009, 06:41 PM #4
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George,

I recently went from Sinemet 25/100 (I am best with low, but more frequent doses) and switched primarily to CR 25/100. Yes, I know that technically we should increase the dosage by about 20-30 %, but for some reason, my neurologist didn't do this. At first I thought it would not be enough, but after a week, I felt better than I'd felt in over a year. On good days, I feel most "normal" (whatever that is- sometimes I forget what I felt like pre diagnosis).

I will concur with Linday and especially with Rick in that it's important to
stay ahead of symptom re-emergence. I can't stress this enough, even if you have to dose an hour ahead of time. It's a pain and rather disconcerting to "lose" that hour, but you lose it in the end anyway, and feel worse, by not nipping that "off" period in the bud.

That being said, I can enjoy symptom free 6-7 hour work days if I dose maybe half an hour early to avoid any harsher wearing off. My body tells me when with mild signs and I dose then.

Also, in the morning and maybe once in the day, I have to kickstart the CR with half a tab of regular Sinemet. This works most of the time, and I understand it is not uncommon to have a need for doing this. I get a mild foot dystonia but only in the mornings upon first dose.

I am going to try Rick's peppermint trick. I also read here that stretching helps; that doesn't always work for me per se, but I find that engaging in some sort of gross body movement or picking up my knitting seems to "trick" my brain into on mode. Very odd, but whatever works!

Good luck. I hope the CR improves how you feel.

Laura
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Old 10-03-2009, 09:48 PM #5
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George,
Prior to about a week ago, my routine was a 50/200CR plus a whole plain 25/100 first thing in the morning; this got me "kick-started" in about 20-30 minutes, and lasted at least 7 hours, around 3:00 pm, at which time I took another 50/200CR plus one half a regular 25/100. This kept me going pretty well until 9-10:00 pm.
Last week I began substituting a whole 25/100CR for the afternoon half a regular 25/100. This gently "bumped up" regimen seems to keep me going stronger later in the evening.
Robert
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Old 10-05-2009, 01:26 AM #6
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Hi George,
First, I agree with those who have advised not to let yourself go "off" before you take your next dose of sinemet, it is much harder to get on again.
However, no-one has mentioned breakfast. It is very important to take your first meds in the morning before you have breakfast. Then they last a lot longer. I don't have breakfast until after I have switched on (20 to 30 minutes). Similarly, try to adjust your other doses between meals, and not too soon after a meal.
Best wishes
Ron
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