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

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.

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

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

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

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

Ron, your words were right on target. I have learned over the years to not eat until I am on or to wait at least an hour after I eat to expect my meds to work.

The movement specialist that I see in Atlanta (Emory) says most doctors don't like Sinemet CR because of its "unpredictability." A CR 25/100 is about 1/4 stronger (levadopa) than a regular 25/100. For this reason many have worse dyskinesia when they use CR.

Try some of those ideas that Rick mentioned - I've been thinking about trying them myself. And we who are "seasoned" (I've had PD for 15+ years) know what we're talking about when we say not to wait until you are "off" to medicate.

Peggy

I love how I always learn something new here! Peg, thanks for sharing what your neurologist told you about CR. I've been doing really well but this weekend things went a little wonky due to stress; I have found that the CR seemed less predictable in going on. Now that I think of it, my doctor did mention that there can be a "skipped dosage" phenomenon with it where it never kicks in until next one.

I didn't know that it had more levodopa in it? I had read that when changing from regular Sinemet to CR, that one had to actually increase their strength by like 15 % or so to account for slow release. I could be wrong. Anyone else have switching experience that may help?

Here's hoping that we get some relief through smoother, more even delivery of levodopa. How is that Duodopa trial going? Also heard we might eventually get a patch delivery?

Laura

Thanks for all the thoughtful replies. This is the first time I have felt energetic enough to check the postings this week.

I may try Sinemet CR for the first time tomorrow (50/200)- the Specialist advised me to take it first on a day I am not working, as the results are unpredictable. I am thinking of taking it with a tab of my usual 10/100 (reg) Sinemet @ 6:15, an hour after breakfast.

I take the Sinemet almost 2 1/2 hrs after I get up because I feel good when I get up- my theory is that I am running on naturally-replenished-while-I slept dopamine. Perhaps I will try taking the Sinemet first thing when I wake up, just to see if that keeps me on more evenly.

I totally agree with all the comments about not letting myself get behind on being "on.' This week, I have been taking the 10/100 Sinemet every 2 1/2 hrs, instead of the usual 3 hours-- and using a tsp of Zandopa (=~100 l-dopa) to supplement 3 of the doses. Definetley feel better, although my annoying left foot toe curling/ knee spasms continue.

This last visit to the Spec made me aware of two things:

1 what they are really for is adjusting medications. Period.

2 they don't have time in advance of the appointment to look at carefully prepared, detailed yet concise e-mail files sent them 10-14 days in advance. I sent the files with a request to look them over and comment on any suggestions he & his nurse have on tweaking the meds dosing, schedule and supplements.

Silly me to have expected such a thing! I think I will post my file with the Ask a Nutritionist on the NPF site.

I do give the Spe.c credit for honestly answering my questions about minocycline, Zonisamide, Glutathione, as well as my use of Ativin for PD related anxiety. (most of the time, the honest answers are "We don't know" "there is no scientific evidence of its usefulness," etc....)

Thanks to all of you. I will let you know what my experience with Sinemet CR is like.

George

Ron & Peggy,

I typically wake up around 4:15 and feel "on" until around 6:45. I know this may not be typical of PWP, but it is my experience.

I take my 1st dose @ 6:15-- always at least 60 minutes after eating-- and always wait at least 30 minutes after the dose before I eat anything else.

What advanatges do you think taking the Sinemet right away when I get up would have? Of course, there is one way to find out.

I should also add that from 5:00pm on, I am pretty much just a vegetable, and typically go to bed by 8:00pm.

Thanks for your thoughtful replies.


George