[rd42]

I'm on 2 25/100 Sinemet 4 times a day and sometimes I sneak one at the end of the day. It works well in the morning time, no so much later in the day. The doctor originally had me taking it every four hours but I find every 3 hours keeps me from fluctuating on and off as much. I talked to two MDS about my limited response to sinemet which they expected to be much better because I'm young. I asked if I should take more, but they said I'm already on a substantial dosage. is 6 x 25/100 per day a lot?

Robert

[rd42]

What strategies do you use when taking sinemet? As needed, on a schedule, during Regis and Kelly?

[lindylanka]

Hi Robert,
With 4 doses you are approaching the upper limit of what is advised these days, especially for younger people.

What interested me about your post was that you talked about limited response. I experienced this on a similar dosage. It wasn't until entacapone was added that I started to get a good response, and I now take less, and have less fluctuation.

If your neuros think you are on a high-ish dose you could ask them to help you find a means to extend the effectiveness of meds you are on.

You could also try taking you 6 x 100/25 as four doses of 1 1/2 tablets instead of increasing your overall intake........

Usually I get a really good half an hour just before starting to slide into an off, I try to catch this time to take the next dose - these days it corresponds to about 3.45 hours, though it used to be about an hour more. There are little signs that I am starting to slide, if I pay attention I usually make it at the right time, and the clock will back me up!

just ideas, hope you manage to get it sorted out......

Lindy

[rd42]

Thanks for the info. I was surprised to find I'm at the higher dose already. I've been on Sinemet since this Jan. I hope I get it figured out, for a while anyway.

I got tired of the constant "if I didn't have PD I'd do this or that", and I applied for a new job and got it. Surprised me. It worries me though that the symptoms are gonna quickly take it away, they certainly have limited if not eliminated the ability to enjoy the new success. I'm also supposed to be traveling to Ireland and Kenya later this year for work and it scares the hell out of me. I've been so tired of living in fear I decided to go for it, I can be afraid at home or far away. It's not the location causing the fear it's my body or I guess ultimately my mind. Living in the face of the fear is my little way of saying F.U. to the symptoms even though they are better at saying it to me. Just getting tired of it.

Thanks for the advice on breaking up the doses, I'll try it.

[Ronhutton]

Hi RD42,
I was a bit confused by your dosage, you initially say,
"I'm on 2 25/100 Sinemet 4 times a day", ie 8 tablets per day, but later say,
"6 x 25/100 per day".
The typical starting dose is usually 3 x 25/100 tablets, and this tends to increase as the disease advances. You don't say how long you have had PD, but many contacts diagnosed 10 years or more ago progress to around 6 to 8 tablets per day. I have seen figures of 12 x 25/100 quoted as the max dose, yet a PD friend was taking 23 tablets (2,300mg L-dopa), before he died of non PD related causes.
I agree with Lindy, adding entacapone enables you to reduce your intake, by extending the on time. It is better to take this as Stavelo, since it is more intimately mixed. Bear in mind that higher dosages are building up trouble ahead with dyskinesia.
Hope this helps.
Ron

[paula_w]

Hi robert,

I thought i was running out of options, taking 1 1/2 to 2 25/100s every two hours. adding nortriptyline reduced rigidity and shortens dystonia, Then I tried stalevo and it is helping pretty much to the point of my gradual reduction of sinemet.I can see and feel quite a difference. It takes out the grindy feeling from too much activity within.

These changes with increases and dosages still adjusting have allowed me to see what a destructive path I was on chemically.

So here's hoping it does not cause prostate cancer or any other kind. i found that i cannot take it past 4 or so pm - otherwise i wake up immediately alert and with a knot of anxiety in my stomach the next morning.

So i was probably topping out at 1600 mg of sinemet,with amantadine and sleep aide, then hit some crazy things that i know are sinemet related but then why doesn't everyone do this and that? well how do we know what anyone does on that much sinemet? but i digress.......

turns out there were options and i learned a lot. I don't know what all you've tried, but some of us seem to agree on the sinemet/comtan combo with or without amantadine for dyskinesia and possibly an anticholinergic or muscle relaxant. Sleep aides and what ever other conditions you might treat, i have hypothyroidism and acid reflux , but reflux has cleared up a lot either due to nortriptyline, which reduces muscle cramping and dystonia or stalevo.

ok that's a medication update - i hope others post theirs - then we could make some comparisons geographically, in treatment approaches.Also compare doctors to specialists.

Important to add that with stalevo and fewer 25/100 my curled hands have opened and gained back some mouth movement and shape.

and answer robert's question.

over and out

[rd42]

Originally Posted by Ronhutton

Hi RD42,
I was a bit confused by your dosage, you initially say,
"I'm on 2 25/100 Sinemet 4 times a day", ie 8 tablets per day, but later say,
"6 x 25/100 per day".
... You don't say how long you have had PD, but many contacts diagnosed 10 years or more ago progress to around 6 to 8 tablets per day.

Oops that was a mistake, it's 6 x 25/100 per day.

I was diagnosed almost 4.5 years ago when I was 30.

I tried Stalevo last year with no effect initially, then it seemed as if it was aggravating my symptoms. Maybe it's time to try it again.


Thanks for the help,
Robert

[GregD]

Originally Posted by rd42

Oops that was a mistake, it's 6 x 25/100 per day.

I was diagnosed almost 4.5 years ago when I was 30.

I tried Stalevo last year with no effect initially, then it seemed as if it was aggravating my symptoms. Maybe it's time to try it again.


Thanks for the help,
Robert

Robert, ask to try Comtan added with your Sinemet. We have few people in our support group that tried Stalevo and did not get good results but do now that they are taking Comtan added with the Sinemet. Also don't expect results over night. Sometimes it takes a while for good things to happen.

GregD

[harley]

as with everything pd related, we are all different. i take one stalevo 50 3-4 times a day which is equivalent to 1/2 reg 25/100. i still suffer huge dyskenesias at even this low dose. you must not have to endure the dyskenesias if you can tolerate such a high dose. have they tried you on an agonist yet? such as mirapex, or requip?

i remember hearing somewhere that 6. was max for sinemet unless it is cr as there is only 75% of the carbodopa/levadopa in the time released formula.