I found in the web an interesting info about a disclaimer contained in the package insert of Sinemet distributed in Australia. It warns as a “side effect the on/off periods may occur to some people after one year use where people may lose their ability to move from minutes to hours then can move again as before and this can occur again and again”.
A coincidence I started experiencing on/off periods when I switched from mirapex to Sinemet two years ago?
The immediate release version of Sinemet seems to be prescribed by default. I have found that the controlled-release version, Sinemet CR, provides a much more even flow of levodopa. Is also available as a generic carbidopa/levodopa ER.
park-bear,
Are doctors hesitant to prescribe it, because as many people as you have explained it to on this forum, it seems that neurologists/ MDS would always recommend it under the proper circumstances. Is it a price or availability issue or do patients just need to explain their situation better to the doctor?
Art
I do not fully understand your comment. From what I can tell from reports by others on this forum, MDs do not prescribe it because they seem to think the controlled-release / extended release versions do not work. I have a reference somewhere that states most people with Parkinson's prefer the time-released versions. That certainly has been my experience.
It seems odd that neurologists would think they don't work so well, yet patients report that it can work quite well?
Art
Yes.
It is because it is so poorly understood. I used to be on a combination of rapid release and extended release prescribed to me by a highly experienced doctor on the east coast. The doctor on the west coast is much younger and knows all about Rytary which is well advertised. I think times have changed and although equally effective, no manufacturer is willing to evangelize a generic product.
“Unpredictable” is the reason given by my doctor when I asked him why he would not prescribe Sinemet CR. He has me on Rytary, a relatively new extended release version of Carbidopa/Levodopa. It is working reasonably well for me. However, incredibly expensive at about $1000 per month with no insurance.
No one has commented yet that the ER version isnt as strong as the standard version, which could well account for all these effects (or lack of them!) The same strength but with its release extended over a longer period means that the amount in the bloodstream at any given time must be less.
When I tried both (taking the ER at night in hope of reducing pain at waking), my doctor said to take a pill and a half.
I wonder if this is what users mean by 'doesn't work'?
Changing the subject slightly, has anyone else come to any conclusion that the effects of PD aren't so much influenced by Sinemet but rather may be more circadian?
Good point. The longer duration means lower peak level.
Yes indeed Hugo-. You are right on point. I do extremely well at start of the day and do poorly at the end. A nap in the afternoon resets everything. I have observed that this is true regardless of the Sinemet or Rytary dosage.
I take Stalevo 200mg every two and a half hours and a Sinemet EQ 100 mg about 1 hour before the stalevo. I take a sinemet CR at night. I have on and off's every single period. I'm on maybe an hour every two and a half hours. Eating spoils everything for me. If I want to get something done for the day I don't eat and then I move around like a blubbering idiot. I try to eat 1/2 hour after my Stalevo.
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